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If we can't use our legs, we'll use our voice
Thursday, May 24, 2012

With Pam Learned and Steve West

Steve West and Pam Learned at the 2011 Greater Philadelphia Walk to Defeat ALS. 

I'm writing to say that I'm interested in helping with Advocacy Days, but am unsure how.


We are not able to travel to DC. However, we can share our story.


To share the story of ALS and my husband, Steve West, who was diagnosed in March 2009, means so many things, that I'm not sure how to focus in a way that helps ALS patients get the help they need from government. 

For example, I could talk about the economic impact on the 5 people my small business employed when I had to close the business to care for Steve fulltime (see more below). 

I could write about our frustrations with our private Aetna Insurance, which will not cover adequate medical equipment to assure Steve's mobility while he was still working. 

  • Even when he fell out of the "approved" mechanical lift weekly for 5-6 months under trained transfer home health aides, they would not pay even the difference in price between a hand Hoyer patient lift and an electric lift. I could not speak with an informed representative despite weekly attempts for 6 weeks in 2011. 
  • When Steve submitted for a power wheelchair, our share through Aetna was going to be $22,000 (after Aetna paid its approved portion of its approved price), but if we paid out  of pocket and didn't have to wait the months for approval from Aetna, our price was $16,800. No, I did not reverse those numbers. The price without insurance was $4,000 LESS. 
  • A rolling shower chair, essential for his skin health, is also not covered--at all. Apparently sponge baths would be ok for how many months/years? 

At issue here was that, while Steve was still covered under his work insurance plan, the incentive for him to quit work and quit paying insurance premiums was very high because of the poor level of coverage for this disease. I believe a similar story can be put together on what Medicare covers, particularly on the patient lift expenses. However, medically, he was able to work nearly 3 years from diagnosis, contributing to our government's economy, in numerous ways. 

There are many frustrations like this living with ALS, however, I can't close this note without saying that The ALS Association Greater Philadelphia Chapter has been essential to our otherwise positive outlook and Steve's lack of pain despite being mostly paralyzed at this point. 

We have enjoyed social events, counseling, a volunteer, a respite retreat for me, the Howard I. Abrams In-Home Care Program, loaner closet items, and fast response to virtually any type of question we've had. The integration with the ALS Clinic is so seamless, that I'm just now learning who works for whom! I'm  stunned by how much The ALS Association does for us and others. I'm certain no other big-name organization does all this in such an effective way. 

We may not be able to help with legs in Harrisburg or Washington, but we can still use our voices as advocates for patients and families in Pennsylvania and across the country. We can, however, use our legs, and the legs of so many friends, to raise money and awareness through the Greater Philadelphia Walk to Defeat ALS.

Every story makes a difference. Every dollar helps another family facing this disease. Every voice makes more people aware of how important it is to bring help for today and hope for tomorrow for every family touched by ALS.

Join us in making your voice heard.


Sincerely, Pam Learned







Patient Services Update: In Home Care
Thursday, May 10, 2012



By Shelley Hill, MSW, LCSW

At some point in your journey with ALS, you may require additional help with bathing and dressing beyond what your caregiver can provide. There are a variety of state and federally funded in home care programs in PA that can provide this type of care depending on your age and care needs. This type of care is not covered by Medicare, Medical Assistance or private medical insurance. These insurances may cover short term home health aide services when a skilled service such as nursing or physical therapy is provided and when medically appropriate and considered to be home bound. So it is best to pursue options that will serve your long term needs. In home care services usually include bathing, mobility, dressing, grooming, toileting, feeding, meal preparation, range of motion exercises and light housekeeping. It is important to explore options for in home care as early as possible given that the referral process may take several weeks or months and may also have a waiting list. Begin talking honestly about the help you as the patient need and you as the caregiver can realistically provide.

In home care options for those under 60 

PA Attendant Care Waiver/Act 150 Program- helps PA residents with a permanent physical disability between the ages of 18 and 59, continue to live in their home and community with support and services. Those applying must be able to direct their own care.

To qualify for the Attendant care waiver program, one must meet the requirements for nursing home level of care and the financial requirements as determined by your local county assistance office.

If these requirements aren’t met, then the applicant is determined eligible for the Act 150 attendant care program and is placed on a waiting list. This is a slow process that is taking many months.  A minimal co-payment may be assessed for services. This is based on your income and will not be more than the total costs of services.

Both programs offer in home care services based on the level of care needed and a personal emergency response system.

Independence Waiver- helps PA residents with a severe physical disability between the ages of 18 and 59, live or remain in the community with the goal of being as independent as possible. This includes those who are ventilator dependent or in the community but who have been assessed to require services at the nursing home level of care.

To begin the eligibility/enrollment process for the attendant care or independence waiver programs, please contact the PA Independent Enrollment Broker @ Toll free helpline: 877-550-4227.

In Home Care For Those Over 60 

PA Area Agency on Aging Services- offer Home and Community based servicessuch as home health care; personal care (help with bathing and dressing); respite care; household chores and home-delivered meals. Program options include the Options program, attendant care, family caregiver support program which is a reimbursement program and the PDA waiver program. The PDA waiver program provides in-home services to those who have increased medical needs but would like to be cared for at home. Adult day care centers can also provide a supportive care environment for caregivers who are unable to provide day time care.  All programs have varying eligibility criteria. Referrals should be made to your county Area Agency of Aging. To find your local office, go to:  It can take several weeks to several months to determine financial eligibility and to begin services depending on the program.

For Veterans

VA Home Health Aide Program

This program offers veterans assistance with activities of daily living such as bathing and dressing or instrumental activities of daily living such as meal preparation and taking medicines.  Care is provided in the veteran’s home by a Homemaker or Home Health Aide and is monitored by a registered nurse who helps assess the Veteran’s daily living needs. Each VA Medical Center determines the amount of care available to each veteran ranging from 2 to 12 hours/wk. These services can be used to help veterans remain at home by offering ongoing personal and respite care. Eligibility is based on clinical need and service availability. Certain VA Medical centers are now providing a 24/7 care program to qualified veterans receiving home health aide services which can provide a live in caregiver or up to 24 hrs/dy of care in the home.

These are the programs provided through government assistance in the state of Pennsylvania, but The ALS Association Greater Philadelphia Chapter is committed to doing all we can to assist patients and families with the Howard I. Abrams In-Home Care Program. This program, based on generous support from the Abrams family, is an example of our associations efforts to cover all the bases in attending to patient needs.

Click here to learn more about the Howard I. Abrams In-Home Care Program. Your support helps many families in Pennsylvania, New Jersey and Delaware.



Be Loud, Be Heard, Be an ALS Advocate
Wednesday, April 25, 2012



By Jodi O'Donnell-Ames

Kevin O'Donnell and his familyKevin and Alina

ALS can take away many things- the ability to walk, the ability to eat, and sometimes the ability to talk. But ALS cannot take away the power of VOICE. May means another National ALS Advocacy Day in Washington, D.C. and the opportunity to voice concerns as advocates for ALS patients. It’s a time to maintain years of progress, to evaluate how the government can further help patients battling ALS and to hopefully, ask and receive. Since there is currently no cure for ALS, patients are demanding, at the very least, early access to drug treatments and additional funding for ALS research. Doesn’t sound like a monumental request when facing a terminal illness and time is of essence!

If you have never participated in such an event, I implore you to take a stand and take action.

I have advocated in Washington before and I’m doing it again this May.

My personal concerns brought me to D.C. (for the first time as an advocate) on two occasions in 1995. The first time was for National ALS Advocacy Day. The second time was to attend the F.D.A Rilutek hearing. Both times, I was present as a wife, mother and concerned citizen. At the time, my young husband Kevin was battling ALS. He was diagnosed at the age of thirty. We, and our toddler daughter Alina, attended the Rilutek hearing as a young family united in hope. At the time, there were no drugs approved specifically for ALS.

All five feet of me addressed the panel:

“Rilutek was proven to extend the life expectancy in patients for three months, but those three months might mean the world to a patient. Perhaps they allow the attendance of a special wedding, the witness of a new birth, or the celebration of a silver anniversary. Whatever they grant, they were well earned and needed.”

I stood in front of scientists and professionals, armed only with my love for my husband and the desire to keep him in my life as long as possible. So, I continued.

“As patient as we may be, ALS waits for nothing. It is relentless; it rapes its victims of their physical capabilities yet leaves the intellect fully conscious to observe the body’s decline. And sometimes, it does that as rapidly as one year. I understand it is the FDA’s responsibility to fully test experimental drugs, however, the present system in not working quickly enough. The clinical drug trials available are wonderful, but leave those who do not quality despondent.”

The use of Riluzole for ALS patients passed that day, 4 to 3 at the FDA hearing. It just passed, but it PASSED. Today it is still the only FDA approved drug specifically for ALS. Never underestimate your power to create change by using your voice and exercising Democracy.

Kevin holding his daughter

You are your best advocate, so be loud and be heard.

If you can’t make it to D.C this year, you can advocate from afar. Start writing! Write to your state’s Congressional leaders and legislators and ask for their support of the MODDERN CURES ACT: (

“More than 133 million Americans – over 40% of the U.S. population – live with a long-term disease or disability. But for some people there are no treatments and there are no cures. Most treatments that do exist work only for 50 to 75 percent of the patients who currently use them. Only 1% of marketed drugs have a companion diagnostic test to determine which patients would benefit from a specific treatment.”

Request additional funding for the National ALS Registry as well! The registry is pertinent to understanding all aspects of ALS and what connects patients with ALS (PALS) across the country. This collection of patient data could be instrumental in solving the mystery of ALS and securing a cure.

Another important objective in the road to a cure is the ALS Research Program (ALSRP) at the Department of Defense. However, that funding is being threatened and the government is proposing to reduce that budget by millions of dollars.

Please write to save ALSRP!

The ALS Association has provided a sample letter, which can be personalized and send directly to elected officials in Washington. Go to the Advocacy Action Center of their website, and start the writing process today!

Although advocating can be intimidating at first, know that it’s your right in the fight against ALS and that if we don’t ask for change, we’ll never receive it!

Patient Services Resource: Secretion Management in ALS
Friday, April 20, 2012



Our Patient Services staff help us Cover All the Bases by providing compassionate care and support to people with ALS. Every day they interact with ALS patients and families to help them live with Lou Gehrig's Disease.

Secretion Management in ALS

By Sue Walsh, RN, MSN, CS

Definition of Problem and symptoms

Some patients with ALS experience problems with excessive oral secretions or experience thick phlegm that they cannot cough up.  Excessive secretions are experienced when the weakened muscles of the mouth, tongue and throat are not able to swallow the normal oral secretions.  Secretions may pool in the mouth and cause drooling, or may collect in the back of the throat where they may cause choking or aspiration into the lungs, increasing the risk of pneumonia.  Controlling the secretions is important to decrease the chance of respiratory complications.  

Drying Secretions

Medications commonly prescribed to decrease saliva production include amitriptyline (Elavil®) and other tricyclic antidepressants, glycopyrrolate (Robinul®), and scopolamine (Transderm Scop®) patches. Possible side effects of these medications include dry mouth, constipation, and urinary hesitancy.  Less common side effects are sedation and confusion.  Atropine drop in the mouth may be helpful in some cases.  Botulinum toxin (Botox®) is often prescribed if the medications noted above are ineffective. Botulinum toxin is injected by a physician directly into the parotid and submandibular glands, where the saliva is made, causing a decrease in saliva production. It often takes 1-2 weeks for maximum effectiveness, and if it is successful, the effects usually last up to 12 weeks. For sleeping difficulties due to the build-up of saliva, try elevating the head of the bed with pillows or by placing a bed wedge under the mattress.

There are times when a person with ALS may develop excessive nasal secretions that drip and cause build up in the back of the throat. You can first try over the counter anti-histamines such as Claritin® or Allegra®. If these don’t work, then we advise that you contact your primary care physician for a prescription form of an antihistamine. There are some that are available in liquid form, such as levocetirizine (Xyzal®) which may be effective for nasal congestion.

Thinning Secretions

Thick secretions are caused by several factors 1) drying of secretions with medications; 2) low airflow as a person’s breathing capacity declines 3) loss of diaphragm muscle strength which diminishes the ability to cough.  Management of these “thick secretions caught in the back of the throat” often requires several approaches in combination:

  • Make sure you are adequately hydrated
  • Guaifenesin (which is contained in Robitussin Chest Congestion® or Mucinex®) can be taken orally or (if in liquid form) given through a feeding tube. Robitussin is taken as 1-2 teaspoons every 4 hours.  Mucinex is a 600 mg pill, taken twice a day.  You can check with your pharmacist to see if he can order large quantities of Guaifenesin that may be less expensive than smaller purchases.  The recommended dose is 400mg every four hours.  If prescribed as liquid, this usually is 4 teaspoons every 4 hours.
  • Other medications that break up thick secretions are Albuterol, Mucomyst or DuoNeb. These medications are administered via a nebulizer, a machine that changes the liquid medication into a mist, which is then inhaled via a mask. These nebulized treatments can be taken up to four times a day and should be performed on a routine basis to prevent build up of secretions in the back of the throat or lungs. The nebulizer machine will be provided by a respiratory therapy company. Some of the companies supply the medicine that is added to the machine or it may need to be prescribed by your doctor to the pharmacy of your choice.. 
  • A suction machine is used to remove secretions by inserting the catheter into the mouth.

Mobilizing Secretions

The respiratory therapist or nurses can help you and your family learn how to perform an augmented manual cough with a bag or with abdominal pressure.  Following a nebulizer treatment, a mechanical insufflator-exsufflator (CoughAssist®) device can help the person cough up the secretions. The insufflator-exsufflator machine produces a pressure that helps the person with weakened muscles produce a stronger, more effective cough. 

If you still have problems with thick secretions after combining all these approaches a high-frequency chest wall oscillation (VEST®) device may be considered.

To learn more about our ALS clinics and how we help ALS patients, visit our Patient Services page. 

For more questions on this topic, you can email Sue Walsh at




A Life That Touches So Many
Tuesday, April 17, 2012



Nancy Trembley and her daughters

Our mother has always been one to lead by example.  She took on the role of raising three daughters with the vigor and dedication with which she has faced every important challenge.  She taught us the values of independence and education when she returned to college to earn her Bachelor’s Degree in Biology while her three children were in high school, junior high and elementary school, respectively.  She went on to earn two Master’s degrees, one in Biology and one in School Counseling, while working full-time and being a mom.  Never complaining that she was too busy to come to a lacrosse game or listen to a heart-broken teenager, she was recognized as the mom in our neighborhood that our friends could come to for questions about anything from boyfriends to biology. 

From her days as an anti-war Navy wife (!), to her stint on the Jenkintown School Board, she has always gotten involved in issues that she felt were important.  She is strong-willed and quite eloquent, so arguing with her is usually a worthless endeavor. Her career as a scientist helping to develop and test pharmaceuticals allowed her to help others live longer. Later, in her ‘retirement,’ she took on a new job helping women who had been victims of domestic violence find safe and affordable housing. Always an advocate, always touching the hearts of others. 

Her strong will is certainly going to be important in this next stage of her life.  Being diagnosed with ALS in September 2011 was devastating to the entire family and to everyone who knows our mother.  Her bulbar-onset ALS affects the muscles that control breathing, swallowing and speaking.  The care that she has received since her diagnosis has been stellar. Her entire medical team at the Pennsylvania Hospital ALS clinic has helped our family to navigate a journey that is completely new and scary for all of us.  From building ramps to providing a motorized wheelchair to helping to navigate the health insurance maze, our entire family has benefitted from the knowledge and care that The ALS Association Greater Philadelphia Chapter and the ALS Clinic have shown us. 

Though our mother may lose her speech, she will not lose her voice. Our entire family will dedicate ourselves to advocating for families who have been affected by this devastating disease.  Our advocacy efforts will include petitioning to increase support for research efforts, lowering the cost of pharmaceuticals and supporting organizations like The ALS Association Greater Philadelphia Chapter so that they may continue to support those living with this disease.  If our mother has taught us anything, it is the idea that a few small voices can become heard when they join with others.  We hope that our support of The ALS Association will help others become aware of the this disease and help join in the advocacy that will eventually bring less expensive medical costs and increased support.

Sincerely Yours,

Kathryn Smith, Kristie Crumley, Amanda Strine & Families - Collegeville

A Sister's Love
Tuesday, April 10, 2012


By Mandy Podehl

Mandy and her brother Dustin at his college graduation. Dustin would pass away from ALS just a few years later at the age of 26.

In the spring of 2007, my younger brother Dustin proudly graduated from Bloomsburg University with a Bachelors in Communications.  He was the first member of our family of seven to graduate from college.  It was one of the proudest moments in all of our lives.  He was going to conquer to world after that day.   Sadly we lost Dustin three years later to the horrific disease of ALS.  He was 26.

My brother was a star in our family.  He was athletic and was named MVP of his high school football team.  He was an excellent baseball player and enjoyed playing almost any sport.  Dustin was also very musical.  He played guitar and sang in a praise band.  He was very active in our church.  He lead worship services with his music and was the youngest person to ever be nominated as Deacon.

In 2008 Dustin was truly starting his adult life.  He was living in his first apartment, thriving in his new job and overall enjoying his life.  That fall he noticed at the gym that his left arm would drag behind the right while lifting above his head.  He shrugged it off as an injury and decided to let it rest.  A few months later the problem was getting worse and he consulted his primary care doctor who referred him to a neurologist.  His neurologist referred him to University of Pennsylvania Hospital in Philadelphia and told him there was a possibility this was ALS. 

At this point Dustin had lost almost complete function of his left arm.  It hung at his side as if dead from the rest of his body.  The muscles had completely atrophied to nothing.  He could no longer play sports, strum his guitar, or use it in any meaningful way.  Because of his age and that the disease seemed to only be in his one arm, the doctors at University of Pennsylvania were hesitant to diagnosis him with anything.  At that time they referred us to Johns Hopkins in Baltimore, Maryland.  During the time we were waiting to go to Hopkins, Dustin’s condition started to worsen.  He was limping and struggling to breathe.  He was put on a bi-pap and could no longer physically go to work.   In December of 2009 it was no surprise when the doctors at Hopkins gave us the devastating diagnosis of ALS.  My 26 year old brother was told he was going to die.

Many people hearing that news would crumble under the gravity of it, but not Dustin.  He stared it down and was determined to fight it.   His intensely strong relationship with God gave him this strength.  We talked often about his faith and how he felt that what was happening to him was not a punishment but rather his journey with God.  He felt this was his “cross to bear” and he had made up his mind to carry it with courage, strength, faith and humility.  Later a friend of his told us about a conversation he’d had with Dustin.  The friend asked Dustin if he was mad at God and ever questioned “Why Me?”  Dustin’s response was “Why not me?”   

Less then five months after receiving his diagnosis, Dustin passed away on May 1, 2010.  Hundreds of people came to remember my brother at his funeral and memorial service.  He touched and inspired so many people in his short twenty six years.  I miss him every day. 

The most frustrating part of losing my brother to ALS is how many people know nothing about it.  They have heard of it as Lou Gehrig’s disease but few know what it truly means.  I want to help change that.  I want everyone to know about this disease like they know about cancer.  I want research to give me the answers to why does this particular disease strike down anyone at almost any age,   There are no racial, ethnic, or socioeconomic boundaries to this disease.  Mostly, I want hope for all those suffering right now.  Hope for a real treatment that will give people years not months and hope for a cure.  These are the reasons I have become involved in The Walk to Defeat ALS in Bloomsburg.  I hope that you can join me in my fight.

Dustin Julian Myers 1983-2010

Join Mandy and others from the ALS Community for Pennsylvania ALS Advocacy Day in Harrisburg on May 1. For more details, visit our advocacy page or contact Tony Heyl at

The Bloomsburg Walk to Defeat ALS is on May 19. If you are in Northeast PA, please join us. And if not, find a Walk near you and register today!

It Began Like Any Other Day
Monday, March 26, 2012


By Mary Ann Wollter

Mary Ann and Gene Wollter. Gene passed away from ALS in 2006.

September 17th 2002 began just like any other day, getting ready for work when our dog Sheba decided to take off and run across a major highway and go into a soybean field after some deer she saw.  My husband Gene of course went after her.  He had recently had back surgery and didn’t move too fast, but said he could do it. 

However, I had to go across the highway to get him because he didn’t seem like he could walk very well and was short of breath.  He had Sheba and he said that he would be OK, but I called my daughter and asked if she could come to the house because I thought something was wrong with her Dad.  She insisted on calling the surgeon who had done Gene's back surgery, but Gene did not want her to call. She did anyway and the doctor said that we should come right away to his office. 

Gene said he would go, but we needed to sit down first as he had something to tell us.  He told us then that he had been diagnosed with ALS in May but did not want to tell us until he took care of some things and also did not want me to know since I was having chemo for Breast Cancer.  Needless to say, this was the worst day of my life and led to be the worst day of our family’s life.  We went to the surgeon's office and he explained to us what to expect and told us that Gene had up to four more years to live since his doctors felt that he had ALS one year prior to the diagnosis.

We were lost, we just did not know what to do, but we did go to Johns Hopkins for another opinion and the diagnosis was the same.   Every six weeks, we went to Johns Hopkins clinic until it was too tiring for Gene to make the trip.  They did put him in one clinical trial, which they finally pulled because there was no indication of the medication helping. At the time and up until one month before Gene passed we were never told of The ALS Association Greater Philadelphia Chapter by the hospitals or doctors.  It was in the end when Gene’s sister learned of The Greater Philadelphia Chapter and by then it was too late. 

We had to get hospice about 2 years into his illness.  He had to fight to get disability SS even though he was terminal, in a wheel chair and had little use of his arms and hands.  They always insisted that he could do something.  Our insurance company was helpful with a wheelchair and bipap machine, but other necessities they refused.  This had to come out of our pocket.  We had been told at a session at Johns Hopkins that a large percentage of familes who had an ALS patient went bankrupt.  This was scary.   We reached out to anything that we thought might help, including a doctor in Pennsylvania who we went to and he diagnosed Gene with Lyme Disease.  These were all cash visits and he was untruthful.  Our hopes went out the window.

Gene started his journey with ALS having to use a BiPap Machine, then the cane, next a walker and finally a wheelchair.

We had a walk in shower installed, a ramp was built, a nebulizer for breathing treatments, hoyer lift, hospital bed, special eating utensils, braces  for his arms and legs, a monitor so I could hear him at night and many many other items.   It seemed like everyday we had to add something.

The ALS Association Greater Philadelphia Chapter provides resources like these for patients living with ALS through the Lea R. Powell ALS Patient Services Program.

Gene wanted to be able to stay home during his illness and thanks to all of the help he and I received from his sisters and their spouses and our two children, their spouses and fantastic friends he stayed in his home.  Gene was a man who prior to his illness was known as the Man with The Christmas Lights.  Each year he worked for a couple of months prior to Dec. 1st  to get thousands of lights up for people to enjoy.  His enjoyment was seeing people stop and look at the lights and take pictures.  He was disappointed when he couldn’t do it anymore, but we still had a few lights up that our grandson put up for his PopPop.  Gene was always working on something, painting saws, repairing things and taking care of the household.  

Gene had a lot of faith and always knew that he would go to Heaven and would see those who had passed before him.  He never asked "Why Me?"  He told me once, that only the good Lord knew that and so be it.  He always had a smile and never ever complained.  He had a great sense of humor and kept it until the end.  Gene was my Hero and the Love of My Life.   I, along with my children, grandchildren, his siblings and friends were very fortunate to have had Gene with us.  We only wish it could have been for longer. 

Gene had a wish that his entire family and friends are trying to help fulfill.   He wanted to find the cause of ALS and a Cure to be found.  He said he knew it would not be in his lifetime, but it would help someone.   As long as there is breath in us we will continue down the road to finding a Cure.   This is the main reason we started the Rehoboth Beach, Delaware Walk to Defeat ALS.  We do this in his memory and in the memory of others who have passed and in honor of those who are still with us. 


Mary Ann Wollter

Widow of R. Gene Wollter who passed on April 20, 2006

Gary's ALS Story
Tuesday, March 20, 2012


I would like to tell you a little bit about myself. My name is Gary Beech. I am 42 years old. I was diagnosed with ALS, also known as Lou Gehrig's disease, three years ago, on Feb 27, 2009. I have 2 children. My son,
Drew, is 21 and my daughter, Breanna, is 16. I have a great support group that includes my family, friends and my best friend and girlfriend, Kim.

Gary Beech and his girlfriend Kim Gallagher at the 2012 Hot Chocolate

When I was diagnosed, I was shocked and very upset. I did not know much about thedisease and my doctor provided me with an overwhelming amount of information. I became a patient at the ALS clinic in Pennsylvania Hospital under the care of Dr. Leo F. McCluskey. I got to know the staff at the ALS clinic very quickly. They are all now very special to me.

In the early stages of my diagnosis, my body was feeling weak but I was able to carry on as usual in all aspects of my life. At first, it wasn’t too bad and I could handle things without relying on others. I was in complete denial in the beginning. I put myself through the rigorous testing of ALS three times, each test more painful and tedious than the last. Each time I would not accept the diagnosis. After three years of denial, I finally came to terms with my illness.

My ALS is progressing very slowly. I feel very lucky since ALS advances quickly with some people and slowly in others. Recently, I have dealt with significant weakening of my muscles. My arms, legs, and face muscles continue to deteriorate. I now have difficulties eating and speaking. There have been many times I have almost choked. Chewing and swallowing has been an issue. While speaking I have noticed pronouncing words is a bit harder and I am more difficult to understand, especially at night when I am tired.

The recent changes with my body have taken a toll on me both mentally and emotionally. Again, I thought I could cope with my disease without bothering anyone or bringing them down with me. I eventually learned, and accepted, I needed help. My emotions were overwhelming and I could no longer handle it alone. I had to find someone to help me sort out the guilt, loneliness, fear and sadness.

I now get through the mental pressures and hard times thanks to my family, friends and assistance I get from the ALS clinic. I also find comfort through the various events put together by the ALS Association. Myself, family and friends have attended the Greater Philadelphia and Ocean City Board...Walk to Defeat ALS. We have also attended two Hot Chocolate events. Attending ALS fundraisers and social gatherings helps me get to know other patients and their families who are in my situation.

Team Beech at the 2011 Ocean City Board...Walk to Defeat ALS

I will continue to fight against this disease with positive and hopeful thoughts. Giving up is not an option. I will never give into this horrific disease with the continuing assistance, support and love from my family and friends. Never give in. Never give up!!!!


The Power of Advocacy
Thursday, March 15, 2012


By Susan Schwartz, ACSW, LSW

Susan Schwartz

The ALS Association’s National Advocacy Day and Public Policy Conference takes place this year Sunday, May 13 through Tuesday May 15 in Washington DC.

PALS, their families and friends as well as ALSA staff from all 50 states attend this three day Conference .  They learn about the goals and process of advocacy, what has been accomplished and what the current and future goals are.  They attend workshops that allow them to better understand the dynamics of funding and research as well as identifying the attributes of a successful meeting “on the Hill.”  Some of the sessions include: Government ALS Research, Congressional Meetings 101 for first timers, Veterans benefits as well as specific sessions on genetics.

As a social worker with the Greater Philadelphia Chapter of the ALS Association I have participated in the National Advocacy events since 1999.  I feel passionately about the power of the collective voices of the PALS and their supporters and have had the enormous pleasure of seeing the concrete results of changes that truly make a difference in the lives of everyone affected by ALS.

The list of specific successes achieved through advocacy include the waiver of the 24 month Medicare waiting period, the service connection classification for veterans with ALS, the increase of ALS research funding from a variety of government source and the creation of a National Registry, but additionally, the benefits of attending and participating in National Advocacy Day provide a personal satisfaction that PALS and families have expressed to me over the yearsWhy should you go?  Here are some thoughts of patients and family members who have attended to consider:

Arlene Gordon writes: “I have gone to DC as an advocate for those PALS who are not able to make the trip.  It is an empowering experience to be there with other PALS and their families and to know that your actions can have a positive impact on finding a cure.”

Mary McConaghy said: “I was empowered by the experience of going with others to the congressional offices to advocate for ALS.  It was fascinating to learn so much about how government works and gratifying to realize that I was having an impact on getting research money for ALS.  And throughout all these activities, I was moved by the kindness and solidarity of the ALS community – patients and their families, medical caregivers and researchers; I heard so many stories and made so many friends.”

Steve Potter shared: “Spending a day moving between the offices on Capitol Hill is an excellent way to get to know more people involved with the fight against ALS.  It is good to know that we are not alone and there are so many people working every day in the effort to find a cure and to treat ALS patients.”

Charlotte and Steve Potter at Advocacy Day

Jayne Cawthern:  “Advocacy doesn’t require skill or a huge time commitment. The only knowledge you need is the personal experience you have had living with the disease.  Advocacy may seem intimidating at first, but once you have faced the diagnosis of ALS, nothing can ever truly frighten you again.”

These Advocates say it best.  The amazing power of seeing representatives from all the chapters across the country and the generous spirit of sharing is ever present.  There is “business” to be done, but there is time made for the informal opportunities to get to know people, share stories and problem solving strategies.  The meetings with congressional staffers are really about your stories…it is the real experiences of PALS and their loved ones that create the support for funding and legislation.  The ALS community welcomes each one of you and hopes you will consider participating in any way you can for National Advocacy Day and the Public Policy Conference.  We are united in our efforts to advocate, find effective treatments and a cure. 

To find out how you can help continue funding for the ALS Registry and the ALS Research Project at the Department of Defense, as well as to enact the MODDERN Cures Act, register online or email Tony Heyl at



Surrounded by Love and Support
Wednesday, March 14, 2012

Many people describe having ALS as being trapped in your own body. While limbs and muscles fail, your mind and spirit are still the same, stuck in a body that will not work.  For Jovita Claudio, her ALS may be attacking her body, but nothing can trap her spirit.

Jovita Claudio

Jovita was born in Delaware, moved to Puerto Rico with her family at the age of three, and then moved back when she was ten and has lived there ever since. She met her husband when they were both kids and have been married for over 18 years. They are blessed with three beautiful children, 17 year old Jose, 14 year old Jonathan, and 12 year old Joshua.

From childhood, Jovita and her husband knew that they would end up together.  Call it fate or God’s plan, but they never had to look far for love. It is a love that Jovita appreciates every day.  Jovita used to go power walking with her husband at dusk. They would spend that time together sharing their dreams and enjoying the world around them.

No doubt, those dreams never included ALS, but they always included each other.

Jovita lives her days with a smile because, even though ALS traps her in her body, she is surrounded by love and support. She credits not only the services of The ALS Association, but also the warmth of Maranatha Church in Newark, Delaware, who provide spiritual coverage and also a caring community that is always available to help.  She is grateful for the women ministry who come to her house to assist with cleaning and cooking and delivering groceries. A sister comes to Jovita’s house to color and cut her hair. Jovita’s church gives her comforting faith and treats her with dignity and respect as a human being so that she can focus on life instead of ALS.

Two years ago, Jovita was diagnosed with ALS. She explains that people don’t understand how hard it is to not have full control of your body. She has had to learn to adjust, physically, emotionally, and spiritually. Now she moves at a much slower pace and she knows that it is hard not just for herself, but also for her caregivers.

Over these two years, Jovita’s family, friends, and church community have done everything they can to better understand her disease so that they can be there for her. Jovita hopes to spread awareness and understanding of ALS to help patients, families and caregivers. She is glad to see so much money and effort going into research and hopes her story will bring more attention to critical patient services in Delaware and beyond.

Jovita and her family, who are always there to support her.

With a smile on her face, Jovita has faith that we can defeat ALS.

When you are surrounded by a loving husband and children and a church community that is there for you, it is impossible to not have faith that a brighter future is possible.

To help people like Jovita and her family, you can donate online or go the extra mile and join a Walk to Defeat ALS near you.



Paula's Story
Wednesday, March 07, 2012

My name is Paula Goldstein and I live in Chester Springs, Pennsylvania. I am 58 years old, married and have three children, Tom, 25, Steve, 24 and Tash, 23.

Paula Goldstein at her home in Pennsylvania


I was officially diagnosed with familial ALS on March 16th, 2010.  I believe I've had it since April of 2008.  For those two years, I was being misdiagnosed with everything from fibromyalgia to Lyme's Disease to rheumatoid arthritis.

My father had ALS in the early 1980's.  It took forever for him to receive a diagnosis.  When he finally did, he lived for only another four months.  At the time, I remembered asking his doctors if the disease was hereditary.  They told me no.  I asked if it was painful.  They told me no.  I asked if it was common in women.  They told me no.

Well, they were wrong.  Having been my father's caregiver, I saw the ALS progress and I have a pretty good idea of what I'll be going through.   ALS doesn't just affect the patient, but everyone around me - my family and my friends.  They see what I go through and how difficult it can be to do simple things.  Of course they help me, but I have to add time to everything I do.  When I was diagnosed I was working at Wyeth Pharmaceuticals.  I continued to work until it became too difficult.  I hadn't planned on leaving my job at the age of 58.  I went on short term disability and then onto Social Security.

Suddenly, our family salary was cut in half.  And because I'm under 65, my Social Security is lower at my age.  We still have a daughter in college, so needless to say, we had to change our life style very quickly.  We had reached the point in our life where my husband and I could travel and enjoy being a couple again, as everyone was out of the house.  ALS has ruined that for us. 

If I would have been diagnosed properly in 2008 we would have done things differently, more traveling, time with the kids and work through my bucket list.  At that time I wasn't suffering as I am now.  I blame the doctors for this.  I knew what I had, because of my father and they kept saying no, it wasn’t ALS.  They actually said I was crazy.

Many people don't understand this disease. Clearly, it can be difficult to diagnose. If medical professionals are challenged by ALS, then it should be no surprise that legislators don't fully understand it yet either. That's why it is so important for people with ALS and their families to be advocates on a state and national level to fund patient services and research for a cure. 

As mentioned earlier, our life style has changed.  For example, we had to put in a gliding chair for our curved staircase so that I could go upstairs.  This is not covered by some insurances or Medicare, so the price tag was $12,000 dollars, out of our pocket.  I have started accumulating a collection of necessary medical equipment - a bipap machine, a nebulizer and a cough assist machine.  Very soon, I am going to need an electric wheelchair and a van to accommodate the wheelchair, just to get around.  There is my medicine, Rilutek, which sells for $1,000 per month.  Luckily, my insurance covers all but a $50.00 copayment each month.  I also have splints for my hands and braces for my ankles.  I had to buy a new wardrobe because my hands no longer work well enough to dress myself.  So now I have a wardrobe that does not include buttons, zippers or snaps.  I cannot wear shoes with any size heel or with laces.  All of these things adds up quickly and can deplete a family's savings for life.  I don't want to do this to my family.

When I was diagnosed in 2010, I became a member of The ALS Association Greater Philadelphia Chapter.   I joined the clinic at the Pennsylvania Hospital.  It was the best decision I made.  The folks in the clinic are wonderful.  They understand the needs of an ALS patient.  As a patient, it is wonderful to come to clinic and see all of the specialists in one day.  I see my doctor, my nurse, a physical therapist, an occupational therapist, a speech therapist, a nutritionist, a research nurse, a social worker and a nurse for the clinical trial I am on.  It makes for a long day, but it is well worth it. They really cover all the bases in caring for the patient.

The ALS Association has provided so many benefits, from eating utensils to home improvements and I am very grateful that they are there to alleviate the financial, physical, and emotional burdens of this disease.

As a PALS, I feel that I should do everything I can to help.  Part of it is selfish because I have three children who have a 50 percent chance of getting ALS, but in reality I don't want anyone to ever experience ALS.  I help where I can.  My family has seen the incredible work of The ALS Association and we want to give back to help all of the other families facing these challenges. My daughter built a team of 100 people for the Walk to Defeat ALS®. She has done this for the past two years.  My friend runs a Chilly Chili for Paula fundraiser contest.  Last year we raised five thousand dollars.  I hope you can join us on March 24. This year my cousin, who recently married, asked for no gifts, but contributions to ALS.  I know this helps, but we need this disease eliminated and we need help to do that.  This is one of the most devastating diseases we have, and we need a cure now.

Team Paula at the Lehigh Valley Walk to Defeat ALS








We Could Do This
Thursday, March 01, 2012

Nothing stops Barry Schultz. Not rain, not bumps and bruises, and certainly not ALS. That may be why he makes The ALS Express so successful.

In March of 2006, Barry was diagnosed with ALS. It is news that nobody wants to hear, but with the support of his wife Sue, who he is now celebrating 35 years of marriage, and his three daughters, Barry became motivated to do whatever he could to raise awareness and money to fight and defeat Lou Gehrig’s disease.

Like so many people affected with ALS, Barry was always very active.  He always loved to ride his bike on trips short and long. His family also shares his active spirit, which has been a great connection his entire life, and even more so during these past six years. 

So when Barry heard about ALS Express, he knew it was the perfect way for him to get involved in fighting this disease. At first he heard that the annual bike ride was in May, but when he found out it was in June, three months after his diagnosis, he and his wife both thought “We could do this.”

Now, when you tell Barry that research into ALS is complex, that raising the necessary money is a challenge, and that we need to get all of our elected officials as well as friends and families to join our cause, he answers the same way: “We could do this.”

In his first race in 2006, Barry’s team had 24 riders. Now, in his seventh year doing ALS Express, Barry’s team averages close to 60 riders.  His wife and all three of his daughters join him, including one daughter who flies in from California.  Barry’s personal story of living with ALS is a big reason why people participate, but it is also his infectious attitude that makes everyone else think “we can do this.”

Barry is defined by much more than his disease.  He works as a maintenance planner and also referees Division II and III college basketball in New Jersey, Pennsylvania, and Delaware. Barry has been a Philadelphia 76ers fan all of his life, and his involvement in basketball has helped him gain an incredible amount of friends and allies in his fight to defeat ALS.

Through his refereeing, he even has a connection to the New Orleans Saints and finds further inspiration through the efforts of Steve Gleason, the former teammate of Drew Brees who is fighting his own battle with ALS.

In fact, his fellow referees, as well as his friends, family and co-workers have raised nearly $100,000 over the past six years through The ALS Express. As Barry says “I feel very lucky to have such support. I even had a teacher from back in high school that sent me money. It is amazing how people have come out to help.”

As if the ALS Express weren't enough, Barry Shultz also has a team in the Greater Philadelphia Walk to Defeat ALS.

As if the ALS Express weren't enough, Barry Shultz also has a team in the Greater Philadelphia Walk to Defeat ALS.

With the Shultz family’s efforts, everybody in the community knows about the ride. That may be because everybody in his community knows Barry! Every year, Barry finds more and more people who have a connection to ALS and he uses their stories as further motivation to work towards a cure.

“I feel very lucky,” says Barry. “I know how many people can’t ride, so I ride for all those people with ALS that cannot.”

Maybe luck has little to do with it. It may be that people join Barry’s ride because when they hear his story, they think, just like him, “We could do this.”

To sign up for The ALS Express, which ends at Morey's Piers in Wildwood, New Jersey on June 16, visit

Jorge's Story Inspires a Community
Wednesday, February 22, 2012

Hello my name is Rosalba Snyder.  My family and friends are supporting team “Jorge’s Orange Tree” which represents my dad’s orange tree that would spend the summer months outside his home, and then be taken in when the weather turned cold. It became a ritual that was repeated for many years until he decided to take it with him to Florida and plant it beside his home there. The following year it produced fruit for the first time.

Jorge, the inspiration for the Bloomsburg, Jorge's Walk to Defeat ALS  Jorge Climbing

My dad lived a wonderful life, as he would say.  He loved telling the same stories over & over again.  But, every time he told one of his stories, it was like the first time.  He would make us laugh every time especially when the story was about his heavy Spanish accent.  He was born and raised in Argentina.  He loved his summer home in Tioga County & his winter home in Davenport, Florida.  He loved playing shuffle board, camping, walking the Disney parks & enjoying life with my mom.

In 2008 he started experiencing atrophy on his left hand. He had several tests done including a nerve test that showed no abnormalities.   He started sweating a lot which was very unusual.  He fell a couple of times & started losing a lot of weight.  He continued to have tests done until he was diagnosed with ALS in April 2009.  This was devastating news.  Feeling desperate, I immediately spent many hours’ day in and day out searching for the impossible.  Helping my dad through the process of this terrible disease was all we could do.  He passed away nine months later at the age of 65, as a result of ALS.  Jorge Alejandro Rodriguez, Sr. (1944–2010)

It is very hard for us to know that there is no cure, no known reason as to why or how anyone can get this terrible disease.  It doesn’t just affect Americans but anyone from anywhere.  My dad’s life was cut too short because of ALS.  I decided to do a walk for The ALS Association because of the support we received.  In our first year, the annual Bloomsburg, Jorge’s Walk to Defeat ALS® brought over 375 walkers and it was amazing.  We were all there for the same reason, to raise awareness and help find a cure.  But, it was also the one day we were able to tell our stories, share our pain and know that we are not alone.  

From that walk, we all realized that there were so many people eager to tell their stories. The walk may take place on one day, but people spend months planning, preparing, and fundraising to make it a success.  Every time someone takes the time to tell their ALS story, it helps increase awareness and get us one step closer to a cure.

Just as important as who tells their story is who we tell them to, as we found out by becoming ALS Advocates.  This February, along with my allies and friends Florence Brady, Mandy Podehl and Jen LaRegina, I visited State Representative Dave Millard.  He took the time to listen to how ALS has affected our lives and promised to take our stories to Harrisburg, where more and more legislators are learning about this disease, and even said he would give his support to our Walk. We have a new friend in the fight against ALS because we told our stories. 

Representative David Millard met with Rosa Snyder, Jen LaRegina, Mandy Podehl, and Florence Brady

Every dollar raised, every step walked, every story told gets us one step closer to defeating ALS. If you are in Northeast Pennsylvania, I hope you will join us on May 19th. If you are not, I hope you sign up for a Walk to Defeat ALS® near you. Then take the next step and become an ALS Advocate where you can take part in national and state Advocacy Days in May. Trust me, your effort makes a tremendous difference. Make your voice heard today!

I can't walk, but I'm still kicking.
Wednesday, February 15, 2012

By Paul Wensel, a person with ALS

Paul Wensel, a person with ALS and a life long Philadelphia sports fan.

I was born and raised in North Wales PA, in the northwestern suburbs of Philadelphia.  I went to college in PA and spent the next 30 years managing restaurants in the Philly area.  I married the girl of my dreams when I was 29, and we eventually became proud parents of 2 healthy sons.  As the years passed, we bought a house in my hometown, on the same street that my Mom and my Grand Dad were raised.  Life went on, the boys were growing up, and all was right with the world.

In November, 2010, the restaurant that I was managing abruptly closed.  I had turned 50 years old three months earlier, and I had no job for the first time since I was 13.  We had a son in Community College, hoping to go culinary school. Our other son was a junior in high school, and was hoping to go to college, too. 

Five weeks after being laid off, I was diagnosed with ALS. 

I had heard of ALS before.  I was a 1st baseman, who wore #4 when I was younger, so I knew Lou Gehrig's story.  What I didn't know was that in the nearly 3/4 of a century since Gehrig's diagnosis, medical science had no cure for the disease.  Only small strides in delaying the effects of ALS had been made, and researchers still didn't even know what caused it.  One thing that they had found is that military personnel have a higher incidence of ALS, but that didn't include me.  

I had no job, no retirement funds set aside, and limited health insurance coverage.  Nobody plans to be unable to work at the age of 50, especially if they had no health issues before.  Hell, I still have a full head of hair, with only my beard showing signs of gray!  I can't be dying.  My doctor sent in a social worker to explain some options, but Disability/Social Security doesn't amount to much when you start collecting it 17 years early.

That was 2 weeks before Christmas last year.  I felt perfectly fine, except I was walking with a slight limp and I had little twitches in my legs. 

By Easter, I was laboring to get up stairs and I could no longer take evening walks with my wife, without taking a break.   

By Memorial Day, I needed a cane to get around.  Getting up our stairs, inside our house, was becoming increasingly difficult.  Our neighbor's father passed away and they generously donated his stair-glide to me.  To get up the 4 steps to our front porch, I had to take one step at a time, and that was getting shaky.  Evening walks were no longer possible with my wife. 

Two weeks later, I went to my first ALS Clinic at Pennsylvania Hospital, which is supported by The ALS Association Greater Philadelphia Chapter.  Without their help, I don't know how I would have dealt with my situation.  Through their loaner program, they lent me a travel wheelchair.  That allowed my wife and I to take our evening walks again.  They also took care of ramping, from our front door to the sidewalk, which allowed me to leave my house safely.  There was no way that I could've afforded these things, and still paid my monthly mortgage.  

By Labor Day, I was having increasing difficulties getting around in the bathroom.  I had a small shower stool to sit on while taking a shower, but I had fallen twice getting out of our combination bathtub/shower.  During my next quarterly visit to the ALS Clinic, that disturbed them greatly.  They immediately arranged to lend me a transfer bench, to make showering safer.  They also lent me a more permanent type of wheelchair, to make our evening walks safer, too. 

At Thanksgiving, friends and family got together to retro-fit our shower.  They eliminated the tub, but I still couldn't transfer to the shower bench without someone else's help. During my recent quarterly visit to the ALS Clinic, they arranged to lend me a shower wheelchair.  I can now shower by myself again.  I've been able to retain a bit of my dignity and independence, at least for a little while longer. 

Christmas this year was spent in a wheelchair.  ONE YEAR. 12 MONTHS.  Perfectly healthy to wheelchair bound.  Walking is not an option anymore and standing up is becoming more and more difficult.  The twitches have moved from my legs to my right hand.  It's getting harder for me to propel myself in my wheelchair and signing my name is becoming problematic.

Paul using his power wheelchair.

The ALS Association Greater Philadelphia Chapter, and the ALS Clinic which they support, have made a huge impact in the quality of my life.  In addition to their loaner program, they have helped me navigate my insurance benefits. They have made sure that I won't be denied things that I'm eligible for, or pay for things I shouldn't.  They've connected me with government agencies that can assist me, which I wouldn't have known existed.  My wife has attended a few seminars that they conduct for ALS caregivers, which she says have been very helpful.  These services are not what is normally available from regular doctor offices and unfortunately it costs money. 

It's also comforting for me to know that someone is just a phone call away, who can help me through this trying times. They have experience from dealing with other ALS sufferers in similar situations.  Because there is no treatment or cure for ALS, the only thing to do for us is to make us as comfortable as possible, for as long as possible.  Groups like The Greater Philadelphia Chapter are vital in retaining a quality of life for someone like myself, who is diagnosed with this debilitating disease. 

I understand that there won't be any golden years for my wife of 21 years & I.  We won't be growing old together.  I'm resigned to the fact that I will never meet the grandchildren that my 18 & 21 year old boys, might someday have.  I realize that I won't be able to assist my children in paying for a college education or purchasing their first home.  I also understand that I'm going to be totally reliant on other people, throughout the rest of my abbreviated life.  What I don't want to accept, is that other people will have to suffer the same trials and tribulations that I've been facing, because science hasn't found a treatment for ALS. 

Celebrities and musicians have galvanized support and raised funds for AIDS research, over the past two decades.  Many of them had friends who had suffered through that newly-found disease.  Consequently, great strides have been made towards curing the once-thought incurable AIDS, in a relatively short period of time.  A cure hasn't been found yet, but treatments have extended the life expectancy of HIV-diagnosed patients. 

Athletes and celebs have raised awareness of various cancers, through the pink-ribbon and LIVESTRONG campaigns, among others.  They've succeeded at increasing funding for a cure for cancer.  Medical research has made great strides in cancer treatment and some cancers are now curable.  A diagnosis of cancer is no longer necessarily a death sentence.  Cancer advocates are able to get testimonials from cancer survivors and recovering patients, as evidence of the progress being made. 

ALS advocates can't show recovering ALS patients or survivors, because there are none.  There is no treatment.  There is no recovery.  There is no cure.  The cause of the disease has never even been identified.  ALS was one of the first diseases associated with a famous person, yet life expectancy has not  expanded from the 2-5 years that it was nearly 3/4 of a century ago, when Lou Gehrig was first diagnosed.  Recent discoveries have increased hope that the cause of the disease can be identified, which could make it easier to discover a treatment or possibly find a cure someday.  We need you to be an advocate.  

Funding for ALS research and patient services is essential at this critical juncture to assist current and future ALS sufferers, to live their lives as comfortably as possible.  

Monies given to The ALS Association Greater Philadelphia Chapter have made a direct impact on the quality of my life. Without the funding or their dedicated, caring staff, I would have been bedroom-riddened or even homeless.  I cannot express my appreciation enough, to all the people involved with The ALS Association Greater Philadelphia Chapter.  Through covering all the bases with critical patient services, research for a cause and a cure, and national and state advocacy, these people are making a difference in people's lives.  Any assistance will be greatly appreciated.

Now it's time to make your voice heard. Please join me in being an ALS Advocate.

Battling ALS Every Day.  I can't walk, but I'm still kicking!


Paul Wensel    


My Mom Could Give up On ALS Anytime, Luckily She Won’t
Monday, February 13, 2012

My Name is Jennifer LaRegina, and I am blessed to be a nurse in Northeastern, Central Pennsylvania area for The ALS Association, Greater Philadelphia Chapter.  Over the past few years I have had the honor to meet many amazing people, have heard many amazing stories.   These families deal with situations no one ever expects they will even need to think about in their whole lifetime.  They handle things with so much love and strength, it is absolutely  beyond words.   I have so much respect for each and every family living with ALS.

We have worked closely with a particular family in Pleasant Mount, PA.  For those of you who aren’t familiar with that area, as the family states, it is definitely in the “Boonies.”  They are a beautiful family of 6; mom Roseanne, dad William and 4 kids-Nicole 17, Billy 15, Vincent  13 and Angelina 8.  They do the things that most families do every day, including work, school, activities, life.  There is one big difference for Roseanne and her family though-Roseanne, at age 40, is living with ALS.

Nicole's mom Roseanne is living with ALS with the help of her family and community.

I  have had the pleasure of getting to spend a little time with Nicole, Roseanne’s oldest daughter.  Truly  an inspiration!  Nicole noted that her Mom Roseanne “is the strongest person I know.  She is loving and happy even though she has lived with ALS since September 2009. She uses a feeding tube and cannot speak or walk– but, is still upbeat- thanks, I am sure, to The ALS Association Greater Philadelphia Chapter!” 

Nicole explained how her dad needed to continue to work as a plumber and electrician, and how Nicole and her siblings continued to go to school, while her mom was home alone.  Unfortunately, with ALS, Roseanne started to need more help, and got to a place where she could no longer be home alone.  You see, this family has already been through ALS once, as their Grandfather, Roseanne’s dad, passed away from ALS before Roseanne was diagnosed.

Nicole expressed how they applied to the state waiver program to get someone to come in to help Roseanne, but the approval process takes months.  The family could not afford to hire any private help on their own.  We talked to the Mattiello’s regarding the Howard I. Abrams In-Home Care Program through our Chapter. This program, through the very generous donations of people like you, along with Jeff Abrams and Margaret Barry who match every dollar donated to the program,  pays  for private help in the home for families just like the Mattiello’s.  Nicole says this program was the “best thing that happened” since her mom was diagnosed with ALS.  She calls their aide provided by this program an “angel!” 

Nicole goes on to say, “I am scared. I am afraid of what’s going to become of my family. But through my mom’s courage, love, and support our family has found its own courage. It means the world to us to have my mom, Roseanne, live in our house because we all love her so much. She is beautiful, kind, smart, outgoing and her personality is awesome.”  Nicole and her family feels without the Chapter’s support with this and many other programs, they would not be able to have their mom at home, right where she belongs!!!!!!

Nicole and her family are a beautiful inspiration to us all!

Nicole now wants to finish school and go into Nursing to give back!

Putting ALS on Ice
Wednesday, February 08, 2012


Carlsons' Rough Riders at the 2011 Seaside Walk to Defeat ALS(R) 

Our walk teams are always looking for cool and creative ways to raise money to fight ALS.  For the Carlson family, there is no cooler way to promote the cause than through ice hockey.

Robert Carlson was diagnosed with ALS in 2003 and passed away in 2004.  Since he was diagnosed, his wife Fran, daughter Michelle, and son Mark have dedicated themselves to finding a cure.  Fran Carlson has led Carlson’s Rough Riders for nine years in the Seaside Board…Walk to Defeat ALS® and she serves on the walk committee, making sure that the Seaside walk improves each and every year.

The sandy beaches of New Jersey are connected to a cold ice rink in Iowa through Robert and Fran’s son Mark, who coaches the Cedar Rapids Rough Riders hockey team.  Since 2008, the Carlson’s have held a jersey auction to raise money for the Seaside walk and to create awareness of Lou Gehrig’s Disease.  The Rough Riders wear special jerseys that are later auctioned off, in addition to a growing number of jerseys from NHL teams. 

The jersey worn by the Cedar Rapids Rough Riders to help fight ALS.

In 2009, Fran designed a jersey with Yankee pin stripes in honor of Lou Gehrig, which the players wore proudly to bring attention to the disease.  Each jersey has Robert Carlson’s initials and the ALS logo on it as a reminder of how personal this fight is for Fran, Michelle, Mark, and their growing community of family and friends.

With their first walk in 2003, the Carlson’s just did donations.  Then they started doing an open house.  Each year, they found new, creative, and unique ways to raise money while showing the personal impact of ALS.  They have become more and more effective at fundraising and creating awareness through their commitment and their ability to extend their message of hope to wider audiences.

Through the work of Fran, Michelle, Mark, and so many others who make the Seaside Walk and all of every Walk to Defeat ALS® such a success, we hope that someday soon we can really put Lou Gehrig’s Disease on ice for good.

To sign up for a Walk to Defeat ALS(R), click here to visit our walk page today! 

ALS Hot Chocolate Frenzy: Calling All Chocolate Lovers!
Monday, February 06, 2012

by Nina Fazenbaker

If you’re a chocolate lover like me, then the ALS Hot Chocolate Event at the Adventure Aquarium in Camden New Jersey is an event for you. Nothing soothes your sweet tooth and demonstrates your sweet side like enjoying a plethora of your favorite chocolate desserts that benefit the ALS Association. The variety of desserts include anywhere from the Gooey Butter Cake from Addie’ Cakes to my personal favorite the Delicious Cookies from Crazy Susan’s Cookies.  The Hot Chocolate event not only consists of delicious desserts but also includes live music, massages and mouth-watering hors d'oeuvres that would encompass a relaxing atmosphere. The event even had a silent auction that gave away vast prizes from trips to gift basket giveaways. The ballroom of the event included one of the most popular exhibits in the Adventure Aquarium, the 40 feet shark tunnel.  It was such a surreal experience enjoying my chocolate martini while having a starring contest with the sharks just inches away from me. I was very impressed with the live music, flow of the atmosphere and had a great time with my coworkers and friends. I felt like the four hours spent at this event really made a difference in the fight against this devastating disease, ALS . Visit the event webpage to find out more about the Hot Chocolate event at Join The ALS association and me on March 8th at the Adventure Aquarium for a fun meet and greet event supporting a good cause.

A Voice for ALS Patients Everywhere
Thursday, January 26, 2012

Mary's family has always been a source of love and support.

Mary McConaghy can’t speak but what she has to say about living with ALS sure makes you pay attention.

The 66-year-old is quite adept at using the Internet and maximizing communication technologies to ensure that her voice continues to be heard. Mary relies on an electronic voice to speak; her IPad or laptop are never far from her side.

Mary refuses to be defined by ALS. “I’m so grateful for people who support me now, but also still see ME, not just an ALS patient, who still regard me as a contributing member of society and who still value me for what I can give and share with them. I‘m also a determined champion of helping others see ALS patients as real people; my iPad helps -- if I’m ‘with it’ enough to use an iPad, I must be defined by  more than this disease. The iPad has helped so many people see ME, not just ALS.” 

A historian, Mary retired last June from her full-time job creating the website for the University of Pennsylvania’s University Archives, making history and historical documents available online. Since then, she has volunteered to build a web presence for her college class and a group at her church. She also created the ALS Women’s Voice on the ALS Association of Greater Philadelphia’s website. Mary invites women with ALS to read and contribute their own experiences to this continuing series of reflections. The ALS Women’s Voice was inspired in part by Mary’s involvement with the Association’s women's support group. “I have consistently attended this group and find it very helpful. All of us have ALS, so none of us seem odd; and when I see women who are calmly dealing with the ups and downs of ALS much longer than I have, it gives me strength. We listen to each other and laugh together.”

She also counts on the support of other ALS Association services, including the Care Connection program. “My coordinators have done a great job of setting up and maintaining the on-line calendar of tasks and messages,” Mary explains. “So far, the team is providing one meal a week, helping me make phone appointments, and arranging monthly movie and museum outings. My Care Connection friends are helping me plus giving my family a break, and they are committed to being here for us in the long haul.”

Agreeing to be profiled for The Greater Philadelphia Chapter, Mary said, is another way for her to help others. “I want to share my story to help demystify ALS for the world in general, and to connect more with other ALS patients so we can walk this hard journey more together and less alone.” 

Mary is originally from Wisconsin, and came to Philadelphia to attend college -- where she met her husband Richard. They have two sons, Ned, 27, an artist; and Alex, 22, a senior at the University of Vermont Business School. The family has lived in Chestnut Hill since the mid 1970s. 

Mary was diagnosed with the bulbar onset type of ALS in December 2009, after experiencing slurring of speech in the summer of 2008. While she can’t speak, eat or drink, and is gradually feeling weaker and more short of breath, Mary can still walk and use her arms and legs. 

The first months of diagnosis, she said, was the hardest for her and her family. Her message of support for newly diagnosed ALS patients: “It’s a huge shock and it takes a while to find a new equilibrium. I focus on living in the moment, enjoying, doing and giving what I can. I believe each person has different strengths and ways of dealing with crisis. The trick is identifying your strengths and using them to help you in this hard time.”

Humor also helps Mary cope with ALS. She shares a story that happened while she was still working. “A woman called to schedule a termite inspection at our house. When she couldn’t understand me, she became worried and kept asking if I was OK, if there was someone with me, if there was something she could do to help. I was worried that she would call 911, and have the rescue squad show up where I work, but I was also laughing so hard I couldn’t breathe. Thank heavens the woman managed to reach my husband, and was reassured there was no need for alarm. Once she knew why I couldn’t speak, but that I could still laugh, she felt better about dealing with me.” 

ALS isn’t the first disease to impact Mary’s family – her older son had leukemia as a child and went through more than 7 years of treatment. “I learned to accept that I could not fix things, and that the most important thing was for none of us to walk the hard journey alone, to be there for each other, to be thankful for friends and family, and the medical staff who walked along with us,” Mary explained. “I reassessed what was really important and learned to live day by day, finding good wherever it appeared. I learned that the essential parts of us would survive, that it would be OK even though I could not grasp how or why.”

Mary hasn’t let ALS slow down her zest for life and giving to others. She is definitely a “glass is half full” type of person – Mary continues to count the blessings that she still has. “It is disconcerting to know how you are likely to die,” she says, “but I’m not dead yet. I made a choice that during the time left, I don’t want to waste time on wishful thinking or bitterness. Instead, I want to be honest about what’s happening physically and then move on to what I can still do. The blessing, ‘Life is short, and we have so little time to gladden the hearts of those who journey along with us’ has a whole new meaning to me.”

Mary created a fundraising page for her team’s efforts as part of the Walk to Defeat ALS. She was amazed that friends donated over $11,000 -- more than twice what she had initially hoped.

Mary created a fundraising page for her team’s efforts as part of the Walk to Defeat ALS. She was amazed that friends donated over $11,000 -- more than twice what she had initially hoped. 

Perhaps the statement that best sums of Mary’s determination to enjoy life can be found on a Fall 2010 posting on the ALS Women’s Voice site: “I will not let the diagnosis of ALS prevent me from living; on the contrary, because of the diagnosis, each day I want to recognize life as it is for me and to make the most of what I have. I want to fully live each moment, contributing as much as possible and savoring each moment.”


Thank you to Miryam S. Roddy for contributing this profile of Mary. Miryam lost her father Jay Strassberg to ALS at age 60 and she continues to give back by volunteering for The ALS Association Greater Philadelphia Chapter.

Keep Your Face to the Sun
Tuesday, December 06, 2011

Guest Blog by Jen Dungee

Keep your face to the sun and you will not see the shadow.  It’s what sunflowers do.  My mom was diagnosed with ALS about 4 years ago.  I remember when the doctors first told us the news.  That day everything changed, not just for my mom, but for my entire family and many beloved friends.  Our lives were all changed that day.  We felt hopeless.  We melted into sadness together and looked at each other with disbelief.  The doctors explained that they were going to give my mom six months to a year to survive, but a year came and went and she was still there.  The next year came and my mom was still fighting to be with us.  That’s when we all started to realize that we still had a chance and that maybe there was something that could be done.  We became hopeful. 

Jen Dungee with friends and family helping to support her mom Sharon Vanderslice, who is living with ALS.

As time went by our family was grateful to receive assistance from The ALS Association Greater Philadelphia Chapter, which allowed us to provide my mom with the equipment she needed to be taken care of safely.  My mom was also lucky enough to have insurance which helped us to get her most of the other things she needed, like a hospital bed.  There came a time when there were other things that were needed for safety that couldn’t be covered by insurance.  Our family needed to have a ramp installed in our house to allow for the safest transport into our house.  The Greater Philadelphia Chapter was always there to lend a helping hand, but we still had expenses to cover some additional costs for the ramp as well as a pool chair that we could use to allow my mom to continue to go in the pool as she used to enjoy for many years before.

 My family eventually decided to have a benefit to raise the $6000 we needed to cover expenses for my mom.  At first it seemed that $6000 was a high goal to set, but if our mother wasn’t going to give up on this fight then neither would we.  We put our heads together and came up with an idea of having a basket raffle as the main fundraiser for this event.  We sent out letters to the community and also to the school district where our mother worked for over 25 years.  One day I sat down to write the invitation to the benefit and I saw on the ALS website that the new official symbol of ALS was the sunflower.  The sunflower is coincidently my mom’s favorite flower.  So we centered the decorations on a sunflower theme.  We built a committee to organize the event which included a few close friends and family members.  On the day of the event, no one could have ever imagined the love that would be felt that day.  We were overwhelmed with 24 beautiful baskets for the raffles and many donations just from friends who could not attend.  My family and I wore t-shirts that we made to honor my mom and we each had jobs that we carried out throughout the night.  It ended like a dream with a total of $6000 raised to help my mom to pay for what she needs.  And I don’t think I’ve ever been more inspired in my entire life.  And to think, it all started with just a thought of a sunflower on a beautiful summer day.  From now on, whenever I see a sunflower, I’ll think of strength, I’ll think of hope, and my mom’s fight. 

Organizing an event can seem so daunting, but in the end, it is more rewarding than words can say.  The Greater Philadelphia Chapter helps people organize third party events year-round, with money directed towards patient services, research, and assistive technology that helps people living with ALS.  I hope others will sign up to host events as well.  You’ll be so happy you did. 

If you want to know how you can put together an event, email Rebecca Telthorster at today.  I hope I can read your story soon!

What to Expect This Saturday
Thursday, November 03, 2011

By Chris Martin

Halloween has come and gone. And for some odd reason, the snow has too? Who would have thought parts of our area would be covered in snow long before anyone had a chance to add extra layers of warmth through the powers of turkey and stuffing? Perhaps it’s just another reminder that we always need to expect the unexpected. If there was ever a group of people who knew to expect the unexpected it is us, the patients and families affected by ALS.

In spite of being forced to deal with the unexpected grief, pain and sorrow of ALS, so many patients and families have managed not only to cope and carry on but also they amazingly manage to thrive. And now I think every one of us deserves to experience something expected. And what better way to accomplish that than through the ALS Walk this Saturday.

Here’s what you can expect if you come to the Walk this Saturday. Love and hope. Strength and courage. Joy and triumph. You can expect to be comforted by the sheer numbers of people around you. People sharing the same stories as you. You can expect to be uplifted by the spirit of what we are all trying to achieve. People banding together to bring an ultimate defeat to a horrible disease. You can expect to see and meet PALS (People with ALS) who will knock you right over with their courage and determination. You can expect to laugh and cry as you reconnect with people you have met over the years. You can expect to experience life at its fullest when faced with its darkest moments.

I know for some of you the Walk can be cathartic and can bring a form of closure. For others it’s your way of being actively involved in trying to help a loved one and to help so many other like the person for whom you care so much. But there are others out there who may be too upset and still too deeply hurt by what has happened in your lives. You’d rather curl up and cry as opposed to getting out to Walk. Trust me when I say that we all have been there right beside you. We’ve all wanted to wave our hand and make the world just go away so we could deal with our hurt and our pain. That’s your right and nobody can take your sorrow away from you. But what the Walk and all of the walkers will give you will allow you to replace your sorrow with joy and your pain with healing. Sorrow never truly goes away but it can certainly lose it grip on our lives as we replace it with the good times and the happy memories that we share with our loved ones and friends. So take a chance, come on out this Saturday and have a great time. Meet some new people, share your story and help make a difference. You will find it rewarding and uplifting and your sorrow will start to fade.

Even though I do not consider myself to be the most religious person in the world I’ve always taken comfort in the 4th verse of the 24th Chapter of the Revelation of St. John the Divine, “And he shall wipe away all the tears from their eyes, and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain for the former things are passed away”.

Come to the Walk and together we will make the former things pass away.

See you all on Saturday.

A special message from Holly's Hope with Ferrous
Monday, October 24, 2011

Holly’s Hope – “2011 Lehigh Valley Walk”
Tuesday, October 18, 2011

Who Am I - Really?
Reflections by Kathryn Voit
June 2011

Who am I really?
A rag doll with a brain,
Whose life is not worth living
And others must maintain?
Or a person who’s disabled,
Who loves despite some pain.

Who am I really,
A victim, a burden, a quad?
At times I think like that,
Mostly, I’m of the human pod.
Evolved from worm through ape,
To an image of my God.

Wind, waves and stars,
Sing hymns of praise.
With no effort on my part,
I reflect the sun’s rays.
Thus despite many disabilities,
My body and spirit blaze.

Thank You Phillies
Monday, October 17, 2011

By Chris Martin

Every year we gather in November for our Walk to Defeat ALS. And every year we receive tremendous support from individuals, families and corporations. Yet there is another huge partner in the fight against ALS. Incredibly, this partner has fought against ALS since 1984. They have been there by the side of thousands of patients and families and never wavered in their support. And for that alone they are deserving of our praise. So this time around I’d like to thank The Philadelphia Phillies and Phillies Charities for everything they have done for the Greater Philadelphia Chapter of the ALS Association. To put in the proper perspective, the Fighting Phils have raised over $12.7 million for the Chapter. Their works have provided endless hours of free care and support for the people who need it most. The ways in which the Phillies support the Association every year is absolutely incredible.

Each spring the organization holds their annual Phillies Phestival at Citizens Bank Park. It’s an evening for ALS patients and their families to just relax and spend some time at the ballpark meeting and greeting the team. Just those few hours of normalcy and fun provides so many of them with a much needed boost. This year over 6,800 people attended the event and together they raised $893,033. As if that is not enough, the Phillies have been gracious and generous to the point of giving access to the stadium for our ALS Walk course. When they first offered the stadium back in 2008, thousands of Walkers had the amazing experience of visiting the stadium right after the Phillies had won the World Series! It was a surreal experience to say the least. The thrill of FINALLY having a World Champion in our city combined with the inspiration taken from the sight of thousands of Walkers made that day one that I, and I know many others, will never ever forget. And by a twist of luck I was given use of the PA System to make announcements. For one brief shining moment I was Dan Baker!!!

Flash to 2011 and a year in which things did not work out the way the Phillies, nor their diehard fans planned. But regardless of the disappointment,  we were able to share the awesome experience of seeing the Phils dominate the regular season. We know that next year the team will back and we will be right back there with them watching every pitch and counting every out. Why? Because we’re fans, no matter what. And in the grand scheme of things baseball really is just a game. No matter how the season ends, life goes on. In just a short number of months the team and the fans start the whole process over again. We’re glad to have the chance to go through the ups and downs all over again. And in my mind, I live for any chance to “do it all again” because in life there are far too many times we have one just one opportunity to share, to care or to love and then it’s gone. So we’ll all be back in April and we’ll all be wearing our red, cheering til we’re blue and bleeding our hearts out white in the hopes that our beloved Phillies will win it all.

 So for all the Phillies do for the ALS Association, for our Chapter and most of all for ALS Patients and families, THANK YOU. For the amazing dedication of my long time walk committee co member Nancy Giles and her husband Bill, for the great works of David and Lyn Montgomery and for the efforts of the Phillies organization as a whole I am grateful and I know you all are too.

And finally for Ruben Amaro Jr. the man who put this incredible team together and gives of himself each day, not only are Association and all of us grateful but together we will honor his ongoing contributions at the ALS Annual Luncheon this fall. My cap tips to a fellow Inter-Ac alum.

Thank you to our beloved Philadelphia Phillies.

Holly’s Hope: Courage and Strength
Monday, October 10, 2011

Holly’s Hope: Courage and Strength

By Holly Bennett

Chris Martin, my co-blogger for ALS, writes excellent entries every week.  I enjoy reading them.  Last week he talked about the ALS staff.  I could not agree with his words more.  The staff at the ALS office works extremely hard.  The level of professionalism, passion, and energy is remarkable.  Every time I visit the Ambler Office, I feel welcome and appreciated.        

I could write many great things about the ALS staff.  For instance, how Wendy Barnes guided our family through the various obstacles of being an ALS caregiver.  Gale Houseman became a friendly smile and a warm hug every time we needed one. Jeff Cline is personal chauffer to board meetings when they are in downtown Philadelphia. Ellyn Phillips and Jim Pinciotti make me feel like I am making a difference every time I see them.   But, what about Allison Walker? Allison Walker and I have worked together for nine years on the Lehigh Valley ALS Walk. Her positive attitude, project management skills, and ability to motivate people amaze me.   I appreciate her in so many ways.  I am looking forward to another phenomenal year with her on October 22.

Thank you to all of you and I could have said something about each one of you in the office but I think Tony will only give me so much room for this blog.  In a nutshell, I am proud to be a part of such a wonderful group of people.

I want to share an awesome experience that happened to me this week.  I invited Donna and Paul Katcher to my daughter’s Daisy Girl Scout meeting last Tuesday evening.  Donna is an ALS patient.  Paul is her husband and her rock.  The reason I invited Donna and Paul to our meeting is that my daughter’s Girl Scout troop was learning about courage and strength.  I could not think of a better way to demonstrate these two virtues to a group of five and six years than by talking about a person who has ALS.

We sat in a circle and introduced Donna to the girls.  I asked Donna to participate in a short ceremony where we welcomed the girls back from a long summer.  She read each scout’s name and individually the girls came forward and received a special badge.  Donna then explained to the girls what that ALS affects her muscles.  She showed them her leg brace that she wears and described how it helps her maintain strength. 

Donna and Paul read to children about ALS.

Next Donna read a children’s book about ALS to the girls that described a teacher who had ALS.  The teacher eventually got too weak to teach and a new teacher took over.  We opened the floor up for discussion and the girls wanted to know what eventually happened to the teacher.  Donna eloquently told the girls that the teacher went to heaven.

If you could have heard what she said next, like me, you would have felt a sense of awe.  Donna talked about courage.  She told the girls she makes everyday a happy day.  “Courage,” she said, “is knowing that it will all be okay.  I love seeing the mountains, I love being with animals, and I spending my days with Paul, he instills courage in me.”

I was concerned about how the girls would digest the weight of Donna’s message.  They certainly seemed comfortable with Donna and seemed to understand how courage and strong she truly is.  Some of the girls will volunteer at the up-coming Lehigh Valley Walk.  They will see other ALS patients and understand their battle. 

I am truly grateful to Donna and Paul for volunteering their time to speak to our Girl Scout troop.  The lesson they taught was extremely powerful. 

Thanking those who help make the Walk to Defeat ALS (R) happen
Friday, October 07, 2011

By Chris Martin



Well, here we are a month away from the Walk, and I think it’s high time to thank the people at the Greater Philadelphia Chapter for organizing this event every year.   


Specifically, I want to focus on two people who were and are the driving force behind not only the Philadelphia Walk, but also all of the other Walks in our region.


When I first contacted the ALS Association and asked what I do to help, I was put in touch with Allison Walker, an Events Coordinator at the Greater Philadelphia Chapter.  It was Allison who first introduced me to the Walk to Defeat ALS®, and I am forever grateful for being introduced to both Allison and the Walk.  Allison has done so much for me and so much for others since she and I first met.   In fact, she has accomplished so much that being forever grateful to her doesn't seem to be enough gratitude considering her efforts.   


At the time we met, Allison was in charge of organizing not only all of the Walks, as if one Walk weren’t enough, but also in charge of organizing all of the individual members of the Walk Committee.  She arranged every type of support you could think of for the Walks.  Allison did it all...from securing the venue; to inspiring and mobilizing the Walk Teams and their Captains; to aiding in the enlistment of corporate donors; to coordinating all of the volunteers; and finally to filtering all of the ideas of the Walk Committee.   And she has done so with amazing success year after year.


Over the last few years, Marianne Mancini has most ably taken over the reins of the Philadelphia Walk from Allison, who logically became the Chapter’s Events Director. Marianne jumped right into the fray and has been incredible at coordinating so many different facets of each Walk and amazing at organizing so many different people and ideas. On Walk Day, you’ll know Marianne because she looks like the person in charge.  Head on a swivel, marshaling dozens of volunteers and a couple thousand walkers as we rapidly approach the moment we cut the ribbon at the starting line, Marianne is exactly the type of person we want in charge of our Walk. Both she and Allison have been and are the right people in place to ensure success.  To be sure, they both had help in that success, thanks in no small part to the great people at the Philadelphia Chapter.  Great people like Ellyn Phillips, Jim Pinciotti, Jeff Cline, Julie McKeever, April Haas, Joan Borowsky, Becca Telthorster and so many others at our beloved Chapter.


This year, there are seven walks. Seven Walks to Defeat ALS; it’s incredible. The number of Walks and the number of Walkers grow every year.  And even though it’s tough knowing that so many more patients and families have had to deal with a diagnosis of ALS, it’s incredibly comforting to see more and more people band together to fight for an end to this disease.


Most of the Walkers will never cross paths with Allison, or with Marianne, or with most of the people in the Chapter; but hopefully, this blog will help them to appreciate the work of two very special people, as well as the efforts of all the people at the Greater Philadelphia Chapter. Thank you to each and every one of them.


Holly’s Hope - A Saint Reflecting an Image of Hope
Monday, October 03, 2011

By Holly Bennett


I saw an article this week entitled, “Saints honor ALS-stricken Gleason with emotional ceremony.”  Steve Gleason a retired “special-teamer” for the New Orleans Saints received an honorary Super Bowl ring this week by his teammates.  Steve is 34 years old. In January of this year, doctors confirmed that Steve had ALS. 

Steve and his wife did not tell anyone outside their immediate family circle about the ALS diagnosis until last month. The couple took time for themselves after his diagnosis.  Their first decision after learning that Steve had ALS was to have a child.  In three weeks, Steve and his wife will welcome their first child into the world.  Steve and his wife traveled the globe for the last three months, videoing their journey for their unborn child. 

In other articles, Steve talks about what it feels like to have ALS.  He describes his fear of going out in public as his health deteriorates.  "I'm afraid to walk in public, because people look at me. But I'm not going to stop. I'm afraid because if I want to commune with my friend Shad (Meier), I have to ask him to cut my chicken for me. But I did it. And I'm afraid to go back and see my teammates and coaches because I know that I'll feel envy. But I'm going to do it anyway. Because fear is just a feeling, and if you can acknowledge that fear, digest that fear and overcome it, the rewards are incredible."

The “ALS Affect” inspired Steve and his family to launch Team Gleason.  Steve’s mission for Team Gleason is to “heal, provide for his family and continue to live the life he loves.” Hope is evident in Steve’s life.  His hope for the immediate future is to have enough arm strength to hold his newborn child in a few weeks. 

Steve also has hope for physical healing.  Hope for healing is an extremely powerful thought and not commonly heard when talking about ALS.   Here is Steve Gleason, a thirty-something NFL football player.  On the field, he has suffered concussions, bruised bones and muscles, and punctured a lung once.  His body healed from all of these injuries.  Now, his body fights to heal the biggest hurt of all, ALS. 

Steve Gleason is in the game of his life.  His opponent in this game is ALS.  He will have successful tackles, memorable victories, and fanfare beyond his wildest imagination.  I sense that Steve will utilize his hope for healing in the most positive way possible.

He is a figurehead who can help the ALS community make progress to find answers.  My hope for Steve and all ALS patients is that he enjoys every birthday, holiday, walk in the park, and embrace with his child knowing that even people he does not know have hope for healing and curing ALS.  I think Steve Gleason is a true Saint and will influence the ALS community in a plethora of ways.

We do not know why ALS strikes certain people over others.  It just does not seem fair.  ALS has robbed my grandfather of his best friend, life partner and hope.  My grandfather is not alone with his struggles with ALS.  Negativity will surface in some of us, that is human nature. My grandfather will celebrate his 85th birthday this week.  This will be the eighth birthday without my grandmother.  It would be a fallacy to say that hope for ALS is in my grandfather’s thoughts.  He is sad and angry.  The only thing that makes him smile since Ruthie is gone is his family.  Tonight we smiled and celebrated my grandfather’s birthday.  As my grandfather blew out his candles, I secretly wished for universal hope and healing.

For more information about Steve Gleason visit his webpage at:

Because of YOU
Thursday, September 29, 2011

By Chris Martin


Over the years, The ALS Association Greater Philadelphia Chapter Walk to Defeat ALS (R) has been blessed to be supported by so many wonderful people.  In fact, there have been so many that it would be a herculean task to name every single person who has joined the fight.  These individuals unite as a team dedicated to the ALS cause  and comprise one giant family.

So I dedicate this post to YOU.   Over the years, YOU have not only walked but have also run, biked, swum, wheeled or done whatever YOU could to support the ALS Association.  It is because of all of YOU that hope lives on in the face of impossible odds.  As Napoleon once said to one of his generals, “Impossible isn't in my vocabulary, remove it from yours;" and that’s what all of YOU have done since being confronted with ALS.  Without your support, dedication and energy, the ALS walks could not have been as successful as they are. Because of your desire to help others and your goal to raise money to fight Lou Gehrig's disease, many persons with ALS received, and continue to receive, the critical care and support that they so desperately need.  Because of YOU, families and ALS patients receive incredible care without having to pay thousands and thousands of dollars. We are all in a time of economic uncertainty, and a diagnosis of ALS can turn that uncertainty into guaranteed financial desperation. The cost of long term care can permanently cripple families’ finances.  Yet because of the donations YOU made, many patients and families received free care and therapeutic services.  In addition, your support has also helped to fund critical research to find treatments and a cure.   

The ALS Association, and more importantly ALS patients and families, cannot begin to THANK YOU enough.

YOU are the foundation of all of the support that the ALS Association provides.  

YOU are the rock on which the Association is built and provide the hope that we can overcome ALS.   

My heartfelt thanks go to all of you.

The “ALS Affect”…and its impact on hope
Monday, September 26, 2011

By Holly Bennett

After last week, I will refrain from talking about the Phillies.  My superstitious husband thinks that it is my fault they lost eight games in a row because I mentioned them in last week’s blog.    

I can tell this week is going to be challenging. My daughter fell at her cross-country meet today and is now sporting a golf ball sized lump on her forehead. (This is a running event not tackle football.) She insisted on a self-prescribed treatment of watching the movie Megamind and eating a bowl of M&Ms.  Her treatment plan worked, she is feeling much better.  If only every ailment could be treated that simply. 

ALS does not just affect a patient.  ALS affects families, neighborhoods, networks of friends, and employers.   The “ALS Affect” many times turns into wonderful acts of outward love and affection.  ALS often makes people feel powerless so in turn they create environments of change.

I met a passionate group of Samuel Adams co-workers and friends who work feverishly to support an ALS patient. They invited me to visit their workplace last fall.  The contact person told me that the company would like to present a check to The ALS Association.  The check was money raised from a golf outing they held in honor of an ALS patient who was an employee of Sam Adams.   When I arrived at the Sam Adams administration building about ten employees greeted me.  They were all friendly and extremely enthusiastic about the event they held. 

The same group from Sam Adams contacted me this past winter.  They invited me to another fundraiser they were planning. I attended the event with a friends, family, and PALS.  The individuals that I met when I visited the Sam Adams office the first time introduced me to many other employees at the event, including upper management.  At the end of the night, the Sam Adams group handed me one thousand dollars to take back to the ALS Association.  A few weeks ago, the Sam Adams crew organized a second golf outing and raised over $12,000.    

The “ALS Affect” empowered the Sam Adams organization to honor a fellow employee and demonstrate how much he is cared about and appreciated.  The “ALS Affect” empowered this wonderful group of people to stimulate a change.  The money they raised assists patients, research, and awareness.  I believe the “ALS Affect” provides an opportunity for new friendships.  I am greeted with a hug when I enter the Sam Adams building, not a business handshake.

There is no doubt that the “ALS Affect” causes frustration, but that frustration is hope in disguise. Sam Adams is not the only group influenced by the “ALS Affect.”  Individuals influenced by the “ALS Affect” hold spaghetti dinners, softball games, golf outings, bike rides, and other events continuously.  These events are environments of hope.  Hope that the money raised will get us one-step closer to a cure.  Hope that the money raised will preserve the quality of life for one patient.  Hope that we can identify why ALS affects the human race. 

I leave you this week with a quote from Helen Keller, “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”

Thursday, September 22, 2011


By Chris Martin

Inspiration comes in many forms and often appears when we are confronted with the most painful of circumstances.  When I think of all of the people who have been diagnosed with ALS and all of the families who have watched loved ones pass away, I realize it would be easy for anyone, or for any family, to slip into depression and despair.  From the moment we learned of my father's diagnosis, I was shocked by the reactions of my family and my father. How could any of us, or any other families, manage to keep smiling, keep moving forward and not just plain give up?  Why not just give up?  Weren’t we presented with an unalterable situation?

Amazingly, I began to realize that while everyone accepted the diagnosis, they also accepted that there was nothing they could do about it.  What I observed were families and patients unwilling to stand idly by to await their impending fate.  To be completely blunt, ALS is a death sentence.  Yet the reactions and responses I witnessed spoke of something other than the despair associated with a terminal disease.  Many years ago, Dylan Thomas wrote of raging “against the dying of the light” and of fighting with every last breath even though we know we are powerless against death and the forces of nature.  I just wish Mr. Thomas had had the privilege to meet some of the ALS patients and families that I have been blessed to meet over the years. He would see the personification of such glorious rage in its purest form.
From the day I met Gerry and Kathryn Voit, it was clear to me that I was dealing with two very engaged, determined people.  As I became involved with the Walk and started attending meetings, the Voits showed me what it meant to be unwavering and dedicated in the face of devastating news .  Not only did they chair all the aspects of setting up the ALS Walk, but they were also a driving force behind obtaining donors and support.  They never pulled punches with their opinions or ideas nor ever stopped pushing for more.  Perhaps in their minds, the “in your face” diagnosis of ALS warranted an all out “in your face” response.  Their unending determination was, and is, simply amazing to behold.  Not only did it inspire me, but it also motivated many others as well.  And thanks to the Voits, many people have accepted the challenge of getting involved.  For the Martins, our family could simply have disappeared into the sunset after my father passed away, and many other families could have decided that enough was enough and gone on with their lives after their loved ones passed away.  We could have said ALS had taken too much from us.  We could have gone gently into the night, but that is not what you do after you have met and become friends with people like the Voits and so many others over the years.  You do not turn away from a fight when you have encountered such courage, strength and dignity.  You take up the mantle and you carry the fight wherever it needs to be taken.  There are so many families, families devastated by ALS, that have done just that.
I have been truly blessed to work with the Voits.  In addition, I have had the privilege and honor of working with Wes Rose and Gary Temoyan, both of whom are PALS (Persons with ALS). Watching Wes and Gary, two dads in the prime of their lives, battle and prevail against ALS completely blows me away.  Both of them know what the diagnosis means for them, for their families and for their children.  Yet every time I leave their presence, I am awed by how they are able to turn devastation into joy and fear into hope.  There have been others like the Voits, Roses and the Temoyans.  Sadly, there will be more families affected by ALS.  I just hope that the courage demonstrated by the patients, by our family and by all of the ALS families will comfort and inspire new patients and families to get involved and provide hope. Someday in the future, we’ll all be able to look back and talk about the loved ones who fought the good fight and the families who carried that fight until the battle against ALS was won. 
Holly’s Hope – You can find a teachable moment too…..
Tuesday, September 20, 2011

I would be remiss if I did not start this week’s blog by congratulating the Phillies for winning the NL East for the fifth straight year.  Did anyone check out Ryan Howard’s skiing goggles during the locker room celebration? It looked like he was ready to hit the slopes.  Thank you Phils for all you do for ALS – your support is extremely important to all of us.

This week I had an opportunity to speak to one of the regional boards of the Greater Lehigh Valley Chamber of Commerce about ALS.  Every time I speak to a group of people about ALS, the experience is truly a “teachable moment.”  Usually someone will ask me to say “Amyotrophic Lateral Sclerosis” and the minute they hear the name Lou Gehrig everyone nods their head in unison. 

The process of teaching people about ALS is a challenge.  I do not have a medical background so my explanation is truly an account of my first hand experience with ALS.  I stress the fact that ALS is a disease nondiscriminatory of age, gender, and race to my audience.  I also emphasize that there are men and women as young as thirty something fighting ALS and balancing marriages and children. The audience’s eyes usually widen because they all assumed that ALS only affects older people.

I always explain the costliness of ALS and the importance of the ALS Association services that fill the gap of what medical insurances do not cover.  By the time I am wrapping up my presentation someone will raise his or her hand and say, “My father or mother or sister or brother or cousin or friend has ALS.” I realized years ago that almost everyone has a connection to ALS in one way or another.

My obvious goal of the presentations I give is to gain sponsorships for the Lehigh Valley Walk and educate the community about ALS.  My hope is that my audience’s understanding of ALS lasts more than thirty minutes after they walk out of the door and they will find the passion to attend the walk. 

Everyone has a connection to ALS.  One year on the day of the walk, a volunteer who I recruited through one of my presentations introduced me to a colleague of hers who joined her to volunteer. The woman and I talked for about twenty minutes about her struggle as the primary caregiver for her mother.  A few months passed and one day I received a phone call from the woman.  I guided her to the appropriate person at the ALS Association who could help her balance her caregiver responsibly.   What an honor that I could assist her in such as small way. 

I do not read many fictional books.   I am more of a non-fictional reader.  However, as recently as last week I found myself lured to a fictional book.  While I was waiting for my daughter to finish her cross-country practice, I overhead two mothers talking about a book.  The book sounded interesting and very moving.   I picked the book up at the library that same week. 

The book was a fast read and was hard to put down.  My husband even commented, “That book must be really good.” I finished the book just the other night.  The reviews I overheard at the cross-country practice were accurate. 

The last line of the book reads, “Perhaps it is just wishful thinking.  Maybe it is love.  Or maybe it is something better.  Maybe it is hope.”   Honestly, those were the last printed words in the novel.  I believe that certain things are placed in our life path for a reason.  I sat back and reflected on the last words in that book and this blog.  The closed book was on the table in front of me and for the first time the title struck me.  The book is entitled, The Walk by Richard Paul Evans. 

Maybe my passion to raise awareness, money, and to find a cure for ALS is a vision.  I know my passion is for the love for my grandmother, and the patients and their families that I have come to know.  Maybe it is something better…..maybe it is the hope that one day we will no longer walk for a cure, but we will walk in celebration that ALS cannot hurt the ones we love any longer.

Have a great week!

Holly Bennett

Please feel free to email comments or suggestions for future posts to

A Thank You to amazing co-workers and an amazing company
Wednesday, September 14, 2011

By Chris Martin


As I write these blog entries,  I could not help but reflect on all of the support provided to my family and our team over the years.  The support has come each and every year from the extended Martin family, our dear friends, and our amazing co-workers.  Even with the help of a dictionary, I am starting to run out of exclamations to aptly describe their generosity.  However, I am going to praise all of them yet again. And since there are so many people to thank, I’ll use this blog entry to praise my co-workers and my company, Brinker Capital. Praising my family and friends comes next. Let’s hope everyone has enough time on their hands to read my epic to thank all of them.  


To give you a bit of background, you should know that my company has been far from immune to the ravages of ALS. Not only did my father have the disease, but three of my co-workers also had family members who were diagnosed with ALS.  My father, my co-worker’s mother, another co-worker’s uncle, and  yet another co-worker’s grandfather passed away as a result of their battles with ALS.


When you look at statistics, two out of every 100,000 people have ALS.  Two; that’s it. Yet in our office of 120 people, there were four families affected. What makes Brinker’s statistic even more incredible was that years after the first family dealt with ALS, a fifth family was also dealt this unfortunate hand. Sadly, the fifth family member diagnosed with ALS was also a former Brinker employee. All have passed away and will never be forgotten.


Five families. Five individuals. Five diagnoses. There are no common themes, no quick answers, and no clear reason why the people in the families or our company family have been affected this way.  It would be all too easy to say, “it is what it is” and too simple to talk about the fickle hand of fate.  It would be logical to call the five cases a statistical anomaly. To be sure, no one involved had any other choice than to accept each diagnosis. But what no one could, or would, accept was to do nothing.  So we all stepped in to help lead the fight against ALS, and my company has been by my side since the day that I asked for its assistance.


As an investment management firm, we have seen the markets swing wildly over the years. We’ve been up and down and down and out. We have had to lay off close friends and have suffered through difficult times as a firm. Yet, not once has Brinker Capital said no when we have asked for support. Time and again as a firm and as a family, they have answered the call to help.  To be sure, I have incredible gratitude for the “caring company”.  Brinker’s care and support is what makes it part of my extended family.  My co-workers say the same thing as well.  By giving back to their employees and to our community, they demonstrated what it means to be a partner in their employee's lives.


ALS doesn’t care about recessions. It doesn’t care if a family can’t meet its mortgage.  It doesn’t care if someone lost his or her job. It is entirely disconnected from any trials we may face.  It is a remorseless disease with one outcome; and if that isn't enough, that outcome is of indeterminate length.  Yet as ALS takes each newly diagnosed person from us, our families, friends and even our companies stand by our sides.


Anyone, or anything, can take away a part or all of our lives. Taking is always easy to do.  Giving of yourself and giving to others can be difficult and stressful.  Yet this giving makes hope possible.  So Brinker does what they can to give, to support and to care. They do what they can to provide hope.


And hope is far more powerful than despair or grief.


With my deepest gratitude to my Brinker Family for all they have done and for all they continue to do. 

Guest Blog: Eagles for Enzo
Wednesday, September 14, 2011

By Vincent Sirianni.

Over the past seventeen years I have watched someone whom I love and have the greatest respect for agonize and suffer from a terrible disease, called ALS (Amyotrophic Lateral Sclerosis). I was in the 9th grade and played football for my school team, and, similar to my grandfather, was an avid football player. I had devoted the past five years of my life to it. But something changed. I developed a passion for golf. 

I never really played golf before but I had a passion to try it. So I gave up football. I was determined to make Varsity Golf in 10th grade.  I dedicated myself to this sport.  I had the same dedication and determination as my grandfather did.  He was told he only had four years to live and this disease would be debilitating to the point you will not be able to talk, eat, walk and one would lose control over your entire body.  

I saw my grandfather beat the odds.

He was told he only had 4 years to live but lived for 17.   They did not know how he did it.  I know:  determination and will.  I learned this from him.  It was a gift he gave to me.  I wanted to give something back,  to make a difference.  I knew that somehow I could with golf.   I wanted to help in conquering this disease, and golf could help.   After all, everyone loves a good golfer. 

I have played in competitive tournaments and knew that I could use this to make a difference.  I decided to reach out to family, friends, and golf associates and ask for support for a great cause.

I decided to play golf for “Eagles for Enzo” in order to raise money for a cure.   The dedication and determination paid off.  In my most recent tournament IJGT-Hershey Country Club, I came in the top 3.   It didn’t happen overnight, it took years of practiceand dedication.   Thank you Nonno, for the gift of determination.   I will continue to help with conquering this disease.

Holly's Hope - The Walk that Emanates Uniqueness
Tuesday, September 13, 2011

By Holly Bennett

The week of rain is over. Fall and all of its beauty is just around the corner.  The Lehigh Valley Walk to Defeat ALS is only thirty days (more or less) away.  I trust that October 22nd  will be one of those beautiful fall days. 

I attended my fair share of walks and runs for various causes over the years.  Most of us participate in these events for personal reasons, physical exercise, or employee team building.  We pay our registration fee, show up the morning of the event, walk or run the course, drink water, eat a bagel, and head home.  If you want to experience a walk that is unique from this familiar process, you should walk with us on October 22nd at Coca Cola Park.

Why is the Lehigh Valley ALS Walk unique?  Here are the top five reasons why.

1.     There is no registration fee to participate in the event.  Walkers need to register either as an individual   walker or as part of a walk team, but there are no fees associated to the registration process.

2.      Walk teams are incredibly spirited.  Catchy team names like Donna’s Dugout, Steps4 Sarah, Jeff’s Jedi, Joe Pa’s Dream Team, and All in for Jim give you a sense of each team’s passion and hope for the future. (For a complete list of walk team names go to and click on Events, Walks to Defeat ALS, and Lehigh Valley Walk.)

3.      Signs with patient names line the two- mile walk route honoring those who live in the Lehigh Valley.  Just like the walk, each patient is unique and deserves recognition as we walk to support them and their families.

4.      Walk teams want you to know who they are by wearing custom designed t-shirts.  Check these t-shirts out from Fritz’s Fight walk team.


You can tell by this photo that this team did not just show up for the free bagel. They are in it for bragging rights. The unique factor with the shirts is that as we walk a sea of colors spills over the stadium. Each color t-shirt represents a unique walk team who is honoring or memorializing an ALS patient.

5.  After the last walker crosses the finish line, the top individual fundraisers, top team fundraisers, top corporate and school fundraisers, and finally the total amount raised for the day is announced. 

In closing, Walt Disney once said, “The way to get started is to quit talking and begin doing.”  The Lehigh Valley Walk Committee stopped talking nine years ago.  Not only did we “begin doing,” we worked to create a unique event that welcomes everyone, including you!

Why I Walk to Defeat ALS
Thursday, September 08, 2011





On November 13th 2011, it will be 7 years and 7 months since my father lost his battle to Lou Gehrig's Disease (ALS). When my dad was first diagnosed with ALS we were all in deep shock. None of us knew much about ALS. Being an information bloodhound, I tried to find out everything possible about the disease. Sadly, nothing I read was positive. NOTHING. No "miracle cures" were available. No specific treatment existed for ALS. And since the 1940's, when Lou Gehrig died, any advances in research and medicine to treat ALS have been very slow to come. Currently there is not even a test to determine if someone has ALS. A person is diagnosed as “having ALS” when the doctors have exhausted all of the other medical possibilities. So in most cases, people hope for some diagnosis, any diagnosis ,before a doctor says the fateful words "you have ALS". In medical terms those words are a death sentence. Worst of all they are death sentence of indeterminate length. Most patients hope (odd use of the word) for a being diagnosed with condition other than ALS. Why? Because few fatal diseases ravage and destroy the entire body and nervous system as rapidly and as devastatingly as ALS. Most patients pass away with a body that has become a withered shell of its former self. Yet all the while, their mind remains fully intact. That is the most shocking result of the disease, while all else is wasting away, in most cases the person’s mind remains intact.

      To put this in perspective let me tell you how rapidly the diseases progresses. When my father was diagnosed, he had trouble with his balance and some weakness in his legs. By January of 2004 the only thing that my father could do was to BLINK. Nothing else. Nothing at all. Think about that. The only movement that he had in his entire body was in his eyelids. Anything that he wanted or needed had to be done for him by someone else. And he could only blink to tell us what he needed. That goes for anything at all, from eating, to going to the bathroom and to taking his medicine. To put it in perspective, there was one where my mother, sister and I spent almost an hour trying to figure out what my dad needed. All he could do to communicate was to blink twice for "yes" and once for "no". After a difficult time of questioning, we finally learned that he had an itch on the end of his nose. That was it. It took 3 fully healthy people almost an hour to come up with that simple answer. So one of us leaned forward to scratch it. The look of satisfaction/exasperation on his face told the whole story. He had had enough of being permanently imprisoned in his body. Just think for a moment about getting an itch. After you think about it and feel the desperate need to take care of it, I want you to think about never being able to scratch it. Never. Something as simple as scratching a nose actually is more difficult for an ALS patient than it is for you and I to scale Mt. Everest.

      By February 11 2004 the disease took its’ final toll on my dad and he passed away. While the sorrow and grief were almost unbearable, it was the support of our family , friends and the ALS Association that helped us to cope. Since my dad’s passing we have received hundreds of letters of support and many donations to the Philadelphia Chapter of the Association in his name. The donations and letters are humbling and awe inspiring to say the least and the work of the Philadelphia Chapter is as well     

 The Chapter uses these donations to provide PRO-BONO support to Persons with ALSand their families. From giving free access to speech therapists, neurologists and certified dieticians to providing patients with computers that can talk for them, the ALS Association is a CRITICAL component in dealing with ALS. They provide support and services without which a patient and family would suffer immeasurably. To put it in perspective, my dad was actually given a laptop that was able to do his speaking for him. I’m sure you are all familiar with a computerized voice, like the one used by Stephen Hawking.  For my dad, the best part of the computer wasn’t the ability to communicate it was the ability to communicate canned one liners. The man was sick beyond belief, yet his favorite thing was to toss out computerized lines like "if brains were dynamite you would not have enough to blow your nose". That line always brought a laugh, and sometimes a tear, out of those around him.

My mother sister and I cannot begin to thank everyone at the ALS Center for their help. But what we can do is to show them how much their work and their services are appreciated on a daily basis. That is why we walk, support and turn to others, like you, for assistance. This Walk is a major reason the Chapter can provide the care and service they do. Be it patient care, or care for the caregivers, the Association does everything in their power to provide comfort and support. The Walk is how we come together but for me the why goes a bit further.

I walk for my dad. For his unending courage and his strength in the face of impossible odds.

I walk for my mom. There are no words to describe who she is and what she did for my father and continues to do for our family.

I walk for my sister , Dad’s “little mouse”, who turned our tragedy into a way to help others.

I walk for the Voits, the Roses, the Glenns, the Temoyans and every other family affected by this horrible disease.

I WILL walk until this disease is no more, until nobody is affected by ALS, or until my legs can carry me no further.

And then I will crawl.


Chris Martin

Walk to Defeat Chairman 

Holly’s Hope
Tuesday, September 06, 2011

My name is Holly Bennett. I am the Walk Chair for the Lehigh Valley Walk to Defeat ALS.  This is my first blog.  My husband bought me an iPhone for my birthday last month so between my blogging and using an iPhone I feel the power of social media.  Okay, I have a degree in library science let’s not get too crazy too soon, right?  I will be loyal to the Dewey Decimal system and pioneer the social media frontier at a slow and steady pace. 

The purpose of Holly’s Hope is to share experiences about ALS and to keep Hope at the forefront of the conversation. Let me tell you a little bit about my first encounter with ALS and the reason I know Hope will lead us to the answers of this awful disease. 

In 2002, my grandmother, Ruth Lichtenwalner, was diagnosed with ALS after a litany of medical tests.  Anyone with ALS or that has someone close to them with ALS will know that the time leading up to the diagnosis is agonizing.  Test after test was administered to Ruth with the goal of trying to find an answer to “What is wrong with me?” 

It just so happened that the day Ruth was diagnosed I was the one that went with her to the doctor.  No one in my family had any idea that an earth shattering diagnosis would be presented in this appointment.  I certainly did not.  When the doctor said, “Ruth I am certain you have ALS” she couldn’t even look at me. We both cried.  On that New Year’s Eve day in December 2002, our battle with ALS began. 

In 2003, my family faced decisions about feeding tubes and searched for answers on how we would continue to communicate with each other.  Each day seemed harder for Ruth.  The frustrating part was that the doctors could not give her medication to improve or even slow her symptoms.  Chemotherapy for ALS does not exist and organ transplants will not cure ALS.  My family did what we could do for Ruth both medically and emotionally.  We took her home and we cared for her. 

Day after day, she would write notes to us and try to live her life as she did in the past.  The difference was she could no longer eat her favorite food, bake her favorite desserts, sleep soundly through the night, or sing her favorite songs.  We all knew this and tried to act as if was okay.  It was not okay.  That’s when I found Hope.

I brainstormed about what I could do to help my grandmother.  You know, kind of like my chemotherapy for ALS. I talked to her about what I could do to help and that I felt the need to raise awareness about ALS in the Lehigh Valley.  In October of 2004, we held the first Lehigh Valley ALS Walk.  I will never forget that beautiful day.  Ruth cut the walk ribbon in her light blue long sleeved shirt that read, “Stop, Walk, and Rock for Ruthie.”  I thought if I could attract 200 walkers and raise $10,000 it would be a huge success.  That first year we raised over $40,000 and attracted over 400 walkers.  Hope. There was now a true sign that there was Hope.

My grandmother passed away in June of 2005. She was tired and needed peace, but I am still fighting for her and the other ALS patients in our community. 

On Saturday, October 22, the Lehigh Valley will celebrate its ninth year hosting a walk to support ALS.  On walk day, I will see ALS patients and families who are now close friends of mine.  I will see others silently grieve with me for those patients who we lost this year.  I will see joyful camaraderie among families, friends, co-workers, and neighbors as they work so hard to fight the battle of ALS.  I will see new patients, new walk teams, and new sponsors.  Will I see you?


Welcome to the 2011 Lehigh Valley
Walk to Defeat ALS®

Saturday, October 22, 2011



Coca Cola Park, 1050 IronPigs Way, Allentown, PA

Registration: 9 a.m. Walk Begins: 10 a.m.

Walk distance: 2 miles

Want to blog because you can?

Contact Tony Heyl at
(215) 643-5434 or

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Holly’s Hope


The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.