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Medicare SGD Coverage Update
5/22/2014

From May 8-10, 2014, ALS families attended Advocacy Days in Washington, where they learned about many critical issues, including that the Centers for Medicare and Medicaid Services (CMS) recently has made several policy changes that impact the availability of and coverage for speech generating devices (SGDs).  We wanted to share with you the latest updates on the issues, including what action The Association is taking. 

 

Capped Rental:

Thank you to everyone for your efforts at the Public Policy Conference to educate Members of Congress about how the new capped rental payment system will impact the ability of people with ALS to access SGDs.  Your meetings have produced results!!  Many, many Members of Congress have offered to assist The Association in opposing capped rental.  Our review of the meeting reports you have submitted also has identified many other potential supporters.  Great job!! 

 

At this time, The Association, the SGD industry and other organizations are in the process of working with the Senate Finance Committee to address our concerns about capped rental.  The Finance Committee has jurisdiction over Medicare, and the outcome of our discussions with the Committee will determine the next steps, including how Members of Congress can help and what grassroots action we will ask you and advocates to take.  Once those next steps are determined, we will share them with you.

 

 

 

NOTE:  We are aware that some SGD and DME vendors with whom you work may ask that you take action on this issue and on the “coverage reminder,” which we have updated below.  This action may include requesting that you collect stories of how people with ALS rely on SGDs or to contact CMS or Capitol Hill.  If you receive a request like this, please refer it to the Public Policy Department so that we can coordinate The Association’s policy efforts and deliver a clear and consistent message to CMS, Members of Congress and the partners with whom we are working to address these issues. 

 

Coverage Reminder:  

Last week, The Association joined with other organizations in sending a letter to CMS urging the agency to rescind the “coverage reminder” that was issued earlier this year and which appears to fundamentally change Medicare coverage policy for SGDs that has been in place since 2001. 

 

As you recall from our earlier communications to Chapters on this subject, on February 27, the four regional contractors that process Medicare claims in the country issued a joint “coverage reminder” for SGDs.  The coverage reminder seems to prohibit coverage for computer-based and PDA-based SGDs and coverage for any SGDs that also have other applications, such as email and word processing, regardless of whether or not those features are “locked.”   This new policy currently is scheduled to take effect on September 1, 2014.  If the current interpretation of the coverage reminder stands, many of the SGDs available to people with ALS today no longer may be covered by Medicare.  

 

The Association has partnered with a number of other organizations and with the SGD industry to oppose this potential change and to continue Medicare’s long-standing coverage policy for SGDs that allows for coverage of computer-based SGDs and SGDs that have additional applications and programs not directly related to speech generation.  

 

In the coming weeks, we will continue to reach out to CMS on this issue.  We also may enlist the support of Members of Congress and, if necessary, conduct a campaign to generate grassroots outreach from advocates to Capitol Hill and potentially CMS.  However, we are not requesting Chapters or advocates conduct outreach at this time because discussions with CMS are ongoing.  We will let you know whether outreach is needed and when it can have the most impact.  We also will continue to keep you updated as discussions with CMS continue on the coverage reminder.  In the meantime, if you receive questions about this issue, please feel free to share the attached letter to CMS and ask people to become ALSA Advocates via our website here, http://www.alsa.org/advocacy/get-involved/, so that they can receive the latest news and requests to take action.

 

If you have questions about this or want to get involved further, email tony@alsphiladelphia.org

 

Hoofin It for Hacker
5/15/2014

Dear Friends,

As many of you know, my late husband, Don Hacker, lost his six year battle with ALS in 2002 at the age of 51.  Until his diagnosis, Don was a healthy man with a busy career in international business, who enjoyed spending free time with our two young sons.  Our lives changed drastically as this horrible neuro-muscular disease took over his body, causing paralysis of his muscles, and requiring ventilation support for his last year.


During this time period, the ALS Association provided both patient and family support through the excellent ALS Clinic at the Hershey Medical Center.  Their research efforts continue, though there is still no known cause or cure.  ALS (Amyotrophic Lateral Sclerosis) is also known as Lou Gehrig’s Disease.  July 4, 2014 is the 75th Anniversary of Lou Gehrig’s famous farewell speech.


On Saturday, June 7, the ALS Association will sponsor the Hershey Walk to Defeat ALS.  Since 2001, we have walked with Don, and in memory of Don, as the “Hoofin’ it for Hacker” Team.  I hope y ou will join the Hacker team and all of the wonderful teams by registering at: www.hersheywalktodefeatals.org 


If you know of any families who are touched by this disease, please share this information.  And if I can give them any support, please let me know.


Thank you!

Libby Hacker

Ride On
4/30/2014

By Sue Bryan

On many beautiful afternoons after a long day's work, my husband Dave would come home, take out his bicycle, and go for long rides through the back roads and farmland of Burlington County here in New Jersey, a routine he enjoyed frequently over the past 20 years. So, when Dave was diagnosed with ALS in August of 2010, he did what came naturally and used his passion for cycling to help fight this Goliath of a disease. Knowing that all of the money raised during the annual ALS Express Bike Ride would go directly towards the research and development of a cure for the fatal disease, gathering a team to ride in the ALS event was a foregone conclusion.

In June of 2011, Dave and a group of neighbors and friends rode their bikes 50 miles from Vineland to Wildwood as Team "Ride On" in the ALS Express. In 2012, as his symptoms progressed, Dave again rode the 50 miles, but this time on the back of a tandem. By 2013, Dave was confined to a power wheelchair. But he didn't let that prevent him from peddling those fifty miles, even if it meant sitting in the back of our handicapped van with electric bicycle peddles moving his feet. Giving up was never an option for Dave.

On July 17, 2013, Dave's battle with ALS ended. For the rest of Team Ride On, our battle began anew. For it was now our time to pick up Dave's slingshot and continue the fight where he left off. But how is Team Ride On to continue without Dave at the helm? How can we ride over those same miles that once carried Dave? The real question, however, is "How can we NOT continue what he started?"

For myself, and our two children, David and Emily, the answer is easy. We knew what determination possessed Dave and how he embraced the challenge. We will simply continue with his plans. But what about the rest of the team, the friends and colleagues whose lives are overflowing with work and family commitments? What causes them to put aside the rigors of daily life and head to Wildwood again this June? So, we asked them "why?"

Here is what they said:

"I ride because we're a team and Dave is our leader - just like he was at Penn. He taught us many things as a leader before his diagnosis but even more after. We continue to live by his greatest teaching of all - 'Work Hard, Play Hard.' Ride On!"

Scott Ward

Penn Athletics

"Dave never did anything halfway. If he committed, he committed his heart and soul to it. This included his family, work, friends and interests. This included his passion for curing this miserable disease. Team Ride On was important for Dave, because it allowed him to bring all of his passions under one focus for the cause that mean the most to him. This one event speaks volumes about who he was as a person and why we all loved him!!!"

Alan Beatty

Shore Memorial Hospital

"I believe that we are more than just our physical being. I ride to celebrate the life of Dave Bryan, what was, what is. I also love being with the knuckleheads who love Dave too as we gather to honor him and his family."

Mark Elmore

Gaga Nation Marketing

"While I started riding to support Dave and ALS, I now ride to honor his memory and to support his family. This is not just about Dave, but also for the trials and tribulations this disease unfortunately brought to his family. Their continued courage in the face of this horrible circumstance and all they have endured during this time should not be forgotten. So this and future rides are also for Suzanne, Davie and Emily Bryan."

Tim Marchio

Neighbor and family friend

Keeping Dave's vision of a world without ALS alive has become paramount in the hearts of numerous family members, friends, and neighbors. Nancy Ely, my father's wife, along with the help of her friend Shirley Horton, lovingly sewed a quilt out of all of Dave's ALS Express t-shirts as a tribute to his fight and dedication. Others continue to wear the red ALS wrist bands and place "Ride On" stickers in their car windows. Those two words have become our family's mantra and cannot be mentioned without thoughts of Dave and his endless determination.

So, on  June 14th, Team Ride On will gather once again for the 2014 ALS Express Bike Ride with the hopes of raising funding for research and ultimately a cure for this horrific disease. Though Dave will not be riding this year, he will be in the hearts and minds of all of us who will be. And we will be reminded of the wonderful, loving person who tried to make a difference in the battle against ALS.

That is why we will always continue to Ride On!!

My Diagnosis
4/25/2014

By Jennifer Zink

Dr. McCluskey’s face turned grim when I asked him if he agreed with my diagnosis. He put his heavy hand gently on my shoulder, and with a soft voice he said, “Yes, I do.”


With those three words, my life was irrevocably changed forever.


 Prior to that haunting first visit with my new doctor at the Hospital of the University of Pennsylvania, I had already spent two years undergoing testing to find out why I was losing control of my left leg. Multiple doctors and therapists examined, poked, prodded, bent, and twisted my body because they could not figure out what was wrong. Every blood test, lumbar puncture, and radiologic examination came back as normal. During that time period, I began to lose strength in my right leg as well. After my doctors at Jefferson University Hospital had ruled out every other possible disease, they performed another painful electromyogram, not yet telling me what they finally suspected was wrong with me. It was that test that at long last gave us an answer for my increased difficulty in walking, yet it also sealed my fate.


This electromyogram showed I had both upper and lower motor neuron disease. Now the doctors knew for sure: my diagnosis was amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease. It robs people of their ability to move their voluntary muscles, and, eventually, the afflicted can no longer breathe on their own. Their minds stay the same, but they are trapped in a body that will not move. My neurologist at Jefferson, Dr. Lori Sheehan, was the first to deliver this news to me. Although I already suspected ALS after happening upon an article in a magazine, hearing her say the words, hearing her say that I had ALS, was utterly devastating. I felt a crushing pain in my chest and tears of grief immediately fell from my eyes. I have no recollection of what she said after that, because all I could think of was that I had three children, and I was going to die before they grew up.


After pronouncing my diagnosis, Dr. Sheehan referred me to the University of Pennsylvania for future care since they have an ALS clinic, which is a group of specialists who care specifically for patients with Lou Gehrig’s disease. In one day, the patients see numerous caregivers, ranging from physical therapy to mental health care to the social worker who helps them maneuver through the myriad challenges that ALS patients face. During my first visit there, in March 2013, I met Dr. McCluskey for the first time. He performed a lengthy physical examination and asked me numerous questions about my health and my daily life. Afterwards, he briefly left the room to retrieve something, while I sat with my husband, Mike, in the small, white room. Since Dr. Sheehan had told me she did not specialize in amyotrophic lateral sclerosis, I still held onto a tiny ray of hope that the diagnosis she gave me was incorrect. That is what I was hoping Dr. McCluskey would confirm when he returned to the examination room.


 Instead, he agreed with Dr. Sheehan’s diagnosis of ALS. He uttered those three words I will never forget: “Yes, I do.”


The pain of sadness and fear returned in my chest and tears stung my eyes, but I was more prepared for the worst this time. In fact, I felt numb. Rather than sobbing as I did in Dr. Sheehan’s office, only an occasional tear would find its way down my cheek, and I was able to ask Dr. McCluskey questions and hear his responses. He told me how sorry he was that I had been diagnosed with this disease, and he scheduled my next clinic appointment, which are held every three to four months. There they would assess my disease progression and help me and my family learn to manage the drastic changes in our lives that this horrific disease would undoubtedly cause.


Mike and I left his office, and since I walked slowly with a walker, I waited in the large lobby for him to bring our car around. Although the lobby was spacious and a great deal of light entered in through the very large, open windows, I began to feel as if I was suffocating. I needed to get outside and breathe in fresh air.
 

It was an immediate relief the moment I stepped outside. I felt free. It began drizzling and I momentarily thought about going back inside, but the cool rain felt so good, I decided against it. As I held onto my walker, I lifted my face to the rain and let it fall where it may. I suddenly became aware of sensations I had ignored for so long and felt more alive than I had in years. The rain was cold, but I liked the bite of each drop as it landed on my face. I then noticed the slight wind traveling across my dampened face and rustling my clothing. I listened to the sounds of the city: horns honking, cars splashing through puddles, a dog being walked and sniffing everything, and people rushing as they walked by me, trying to get to their destination as quickly as they could. I saw the wet leaves clinging to the gray sidewalk and the brown and orange bird hopping from one place to another. I realized then something very important; I was the only person who was not bothered by the rain, I was the only person not rushing to get somewhere, I was the only person living in that very moment. I felt the beauty, the joy, and the wretched pain of sadness in that moment all wrapped into one. I had been given a terminal diagnosis, but I felt more alive than anyone else on that street.

It would be several long months before I truly accepted my diagnosis and the veil of sadness was lifted, but that day in the rain set the tone for the rest of my life. I was going to live each moment I had left. I was going to embrace each change as ALS destroyed my body. I would not let the disease become part of me. I had to live with it, yes, but I never had to allow it to rob me of my happiness or of the love I felt for the world and the people in it. ALS is my diagnosis, but it is not me. Life does go on, and I’m going to enjoy every minute of it.

 

A Thank You to the ALS Community
4/24/2014

A Note of Gratitude to the ALS Community for Sharing Your Stories
By Sarah LaFave
 
“Sarah, you might add "ALS" to the list of diseases in your nice description of "What We Do" on the Lori’s Hands website. Ron”  It’s hard for me to believe, but it was just a year ago that, per Ron Wenger’s request in an email to me, we added ALS to our online list of Lori’s Hands client diagnoses. In this one short year, I have had the rewarding experience of becoming acquainted with the ALS community. I’ve been forced to depart from my state of blissful ignorance about the disease itself: my eyes have been opened to the dramatic impacts that ALS has on individuals and families. More importantly, I’ve met resilient, generous people who have helped me become a better educator and caregiver.
 
When the Lori’s Hands experience became part of its own service learning class, I reached out to dozens of disease-associated organizations in hopes of recruiting new clients who would represent the diversity of experiences amongst the chronically ill. The ALS Association Greater Philadelphia Chapter quickly connected us with clients in our area. Ron Wenger, an ALS patient and retired University  of Delaware administrator and faculty member, was one of those clients. He was already working with Physical Therapy students at the University and was enthusiastic at the prospect of getting to meet more students, and to share his experiences with them.
 
Dr. Wenger quickly became one of our students’ favorite clients to visit at home, and his visits to our classroom were equally impactful. He and his wife, Sherry, visited campus several times to meet with our students and share their story. Ron was articulate, intelligent, and had the knack of a well-seasoned educator – he put our students at ease and laced his vivid descriptions of his symptoms and frustrations with puns, wit, and self-deprecating humor.
 
Before Ron, ALS was a flashcard in a nursing class, a page in a medical surgery textbook, and one famous baseball player’s death sentence. Though I only interacted with him a few times before his death earlier this year, Ron has forever enriched my understanding of the disease and my appreciation for the ALS community. Ron told my students how relieving it was when admitted to the hospital or visiting a physician’s office to encounter a provider who was familiar with ALS and understood his disease-specific limitations, preferences, and needs. It can be a lonely disease, I’ve learned, and Ron hoped that by sharing his story with students, he and Sherry could improve other families’ chances of someday interacting with nurses, physicians and therapists who would be knowledgeable about and compassionate towards the ALS community.

Like many ALS patients I’ve met over the last year, Ron and Sherry found it within themselves to reach out and make something positive come from their tragedy. It was surely exhausting for them to tell the same anecdotes over and over again to our various groups of students, but they did so each time with renewed enthusiasm and passion. They took the time, effort and energy to get Ron and his wheelchair into our classrooms, and Ron exerted himself despite his shortness of breath. Because of this and because they were generous, open and honest with their story, we know with certainty that our students are forever changed. Our students will become those providers that an ALS patient is relieved to encounter.

This week, Lori’s Hands is hosting its first Ron Wenger Memorial Lecture at the University  of Delaware. In hopes of honoring Ron’s legacy, we will host a nurse and a patient from the ALS Association Greater Philadelphia Chapter, who will share best practices and insight into the human experience of ALS with our students. While it is with heavy hearts that we hold the event without Ron, we know that he would want students to continue to have an opportunity to ask questions and correct false assumptions about ALS. Thank you, on behalf of future providers, to all of you who share Ron’s commitment to raising awareness by inviting students and the community at-large into your personal lives. 

Expressing our Gratitude
4/17/2014

Our names are Alisha Davy and Elyse McCabe.  We are currently Occupational Therapy Students at Thomas Jefferson University. We were privileged enough, through one of our classes, to work with a client who has ALS.  We wanted to take the time to express our gratitude and share our experience with this wonderful community. 


Dan and his wife Mary have opened their doors and shared with us their very personal experience of living with this disease.  We learned not only about the progressive and unpredictable nature of ALS, but the way in which it impacts a family.  Firsthand we saw the strength and love Dan and his family share.  Their open communication and ability to see the positive has reflected through all of their experiences.


Working together as a team, we were able to create some environmental modifications, one of which include’s Dan coming to speak to our class about his experience.  Using his open and easy going nature, Dan has used his experience with this disease as an opportunity to teach other people.  He shares his experience to give light and help others to understand as well as try to prepare for a situation of unknowns.


This experience has enhanced our learning so that we will not only be better occupational therapists, but we are better people for knowing Dan and Mary.  We can’t express in words how grateful we are for this experience.  Going into this experience we knew we would learn a great deal about ALS and working with a client. 

We did not expect to have eye opening and life changing experiences with Dan and Mary.  We would like to express our most gracious thanks to Dan and Mary for working with and teaching us along the way.  We have developed more skills and understanding in our 7-week sessions than we could have ever imagined.  You will forever be remembered as our first clients and we could not have been more blessed.
 
 
Thank you,
 
Alisha Davy & Elyse McCabe

Chempions
4/15/2014



On May 10, 2014, the Marini family will participate in the Lakewood Walk to Defeat ALS® in honor of the family patriarch Orlando Luis Marini, who was diagnosed with ALS in 2013. Orlando is from Argentina, and through the strength he has shown since being diagnosed with Lou Gehrig’s Disease and the strength of character he has shown to his children throughout his life, his family sees him as their champion. So, to honor him and his heritage, the family decided to name their team Chempions. “The word Che corresponds to expressions such as “friend”, “mate” or “pal” in Argentina, and that is the perfect way to describe my father’s relationship with everyone,” said his son Luis.

Luis, along with his sister Carla, see this phrasing as having a deeper meaning than just general friendliness. Throughout their lives, they have seen their father always be happy, always be dependable, and always give of himself to his family, friends, and colleagues. He has passed on these selfless qualities to his children and community, who are all eager to take their turn to support him.

That is why it is not surprising that Luis and Carla don’t see the Walk to Defeat ALS® as only to support their father. The family is very appreciative of the services from The ALS Association and they want to make sure that all families with this disease can receive quality services. Just like the team name Chempions, they want to be friends to all ALS families and show their father that he is not alone in his fight and that, in fact, nobody has to face this disease alone.

“Life is full of surprises,” said Orlando’s daughter Carla. “Ideally, you’d like to think that they were all happy surprises, but, as we have all experienced at one time or another, these moments can throw a wrench in our plan for life. That is what happened to me when I found out that my father had been diagnosed with ALS. There came a fork in the road and my choice was to either surrender to sadness or try and find hope in a helpless situation.”

Unsurprisingly, because they had learned from their father’s life of selfless examples, the Marini family chose hope over surrender. When that fork in the road came, they decided to sign up for the Walk to Defeat ALS® to honor him and all others who struggle with the disease.

“There are so many aspects of loving someone with a disease that can be emotionally draining so to have a day of hope, and a feeling of camaraderie with other families who share similar struggles gives a silver lining to all of us,” added Carla. “Preparing for this walk is emotional as we have been blessed and overwhelmed with a positive response from friends and family whether financially with a donation or wanting to walk beside us to show my father he is not alone in his battle. My father is a great inspiration to us all, he has taken his disease in stride never showing sadness or helplessness. He pushes through every day with his hardest efforts and the utmost of love and appreciation for my mother and all us who help him”

If Orlando will meet every day with love and appreciation, then his children will as well. In just their first walk, they have already raised over $4,000 and the donations continue to come in for their team. Luis, Carla, and the whole Marini family greet their supporters with the joy for their father that he always showed to them, and that positivity is contagious. The family finds strength in each other and they look forward to sharing that strength with other ALS families at the Walk to Defeat ALS® and everywhere they go until they finally put an end to the disease for good.

Said Carla and Luis: “We hope that all of the families who have been helped by the ALS Association in one way or another find their own ways to come together, to walk together, and to share their stories and hope with one another. We will always be friends in this cause.”

They won’t only be friends, they’ll be Chempions.

Orlando's wife Ana Patricia Marini added this personal note about her husband:

To my dear husband Orlando Luis Marini, I had been blessed for the last 43 years of marriage. You have loved me unconditionally, protected me,  pampered and supported me all this time. So my dear Che, it is time for me to walk with you and face this illness with the same strength, courage and acceptance that you have shown all of us. Let me take care of you now. Let me love you and pamper you. Let me help and support you. I am praying that God will give me strength, so that I can support you the same way that you have supported me and our family for so many years.
 
Your humbleness, strength, patience, and acceptance of this illness has been amazing. You are and will be a man of incredible integrity. I am so proud of you!  I know God is aware of the many difficulties that this illness brings, but I know that God  will reward you with many blessings, and will give you many more years of happiness.
 
I love you with all my heart
Tu otra mitad..... (Your Other Half)

 

 

Denise Naylor - Force of Nature
4/11/2014

 

You might know ALS as a disease that makes a person physically weaker with every passing day, month and year, but the way that Denise Naylor has faced this disease may just change your perspective on what strength really is and why not even ALS could weaken her incredible family or spirit.


Denise was diagnosed with ALS in October of 2002, but began feeling, as she put it, “not herself” back in September 2001. In a story that is very familiar to many ALS families, doctors first though Denise could have Lyme Disease, then maybe she had a stroke or it could be Multiple Sclerosis. It was her husband Cliff who insisted on finding a doctor who could provide answers and, after a year of guessing, they finally had a diagnosis.


When she heard the news, Denise’s first reaction was to ask “What the heck is ALS?”


Her husband knew all too well what ALS meant. While Denise responded with a question, Cliff’s body responded with tears.


At 51 years young, Denise has now been living with ALS for over 11 years, or, to put it another way, Denise has been living with this disease for over 1/5 of her life.


Her story though goes back to the other part of her life, the 30 plus years she spent with Cliff before they had ever heard the letters ALS. Those were the 30 years that made sure that together, no disease could weaken their love, their family, or their spirit.


Denise met Cliff while attending Delhaas High School in Bucks County, Pennsylvania, where she graduated in 1980. They married less than three years later on March 26th, 1983. “I married my best friend, my soul mate, and the greatest guy in the world,” Denise said. Needless to say, the feeling was mutual.


Together Denise and Cliff had three daughters, Shannon, who is 29 and married to her husband John, 27 year old Megan, and 15 year old Nikki. Denise was very active with Shannon and Megan’s elementary school’s  Parent Teacher Organization. She then went to work at Giant Food Store for nearly a decade until she got pregnant with her third daughter and then went on to work at Georgine’s Restaurant up until she learned that she had Lou Gehrig’s Disease.


When they heard that diagnosis, everything changed. Those changes weren’t just physical. As the disease attacked Denise’s body and made it weaker, others had to be there to nourish her spirit and give her the strength she needed. Denise had always been extremely active in the lives of her children and now her husband would have to take up many of those responsibilities.


“Cliff stepped right up and took care of me, no questions asked,” said Denise, not with sadness but with pride. “Nothing was ever too much for Cliff. He became the mother and father of this household, jumping in when I was unable.”


Cliff wasn’t the only one who gave Denise strength. Nikki was just four years old at the time, but she gave her mom a reason to live. Her other two daughters were old enough that they could fend for themselves, but, as Denise puts it, “If we didn’t have Nikki, I probably would have spent every day in bed. She gave me a reason to get up because I had to take care of this four year old little baby. She needed me, but in reality, I needed her!”


Since that day when ALS started to sap her physical strength, Denise has been able to watch her little baby turn into a bright and caring young woman. Many people with ALS are sadly unable to say the same thing as the disease can progress very rapidly, so Denise is well aware of how fortunate she is to have every moment with her daughters.


When ALS began to seriously impact her body, taking her from a cane to a walker and then to a wheelchair in just one year, Denise, Cliff and their family worked hard to lead a normal life. It wasn’t the same of course, but they still went on family vacations and Denise still cooked and created as many happy memories as possible. She is very happy that she still has the use of her hands, can stand and get herself in and out of bed, get into the shower and cook for herself and Nikki. Denise can also get up to $200 worth of groceries on her wheelchair, buy and wrap Christmas presents, and still loves to talk, hang out with her girlfriends, smoke cigars and drink whiskey. Not even ALS can stop the force of nature that is Denise Naylor.


That force of nature made a big impact in 2004 when the Chapter asked Denise to start a Walk to Defeat ALS® in Bucks County. With help from her sister-in-law Joyce and Laura Houriet (whose husband Jack has ALS), Denice formed a committee. They had their first walk in January 2005 at Franklin Mills Mall, but they were met with a huge snowstorm that seemed to threaten their success. They had a goal of $60,000 and weren’t sure what that first walk would be, especially with a winter storm. Imagine their surprise when they raised $120,000, doubling their goal! The committee continued with four more Walk to Defeat ALS® events in Bucks County before the event merged into the Greater Philadelphia Walk to Defeat ALS®. That organizing work from Denise and others continues to leave a lasting, positive effect on our walks to this day.


About 5 years ago, Denise’s mom retired to help her with physical needs arising from ALS and now both parents help to support her family. Denise’s youngest daughter Nikki continues to be very active, especially with Ultimate Frisbee and softball, which she plays for the Philadelphia Spirit.


Denise’s parents aren’t the only ones who help. Seven years ago, Gail Housman, one of the nurses at the Greater Philadelphia Chapter, introduced Denise to the Chapter's Visiting Volunteer program and connected her to Linda Brotschol. Linda has been supporting Denise in whatever way she can ever since they first met and was even named a Volunteer of the Month.



With the help of her family and now a new friend from the Chapter, as well as motivation from the Walk to Defeat ALS®, Denise approached her diagnosis with all the strength she had. At some point, she knew she would have to return the favor and be the strength others needed. In 2008, Cliff started complaining that his leg was hurting and Denise made sure that her husband saw a doctor. After all, he always made sure that she saw a doctor as well. They found out that Cliff had lung cancer. Sadly, he passed away on June 25, 2009, two months before their daughter Shannon got married.

   
Cliff helped teach Denise how to be strong and she has vowed to maintain that strength for herself, her daughters, and for him. Since her husband’s passing, Denise has made her tough spirit and dedication permanent with a tattoo on her writs that reads “Believe & Hope.” Her life and attitude truly give us reason to do both.





 


Jared's Promise Fulfilled
4/3/2014

At the beginning of the year, Jared Laff made a promise. As he trained for his Junior Black Belt at East West Karate, an impressive accomplishment for somebody who is just 9 years old, he pledged to pursue his goal with a higher purpose in mind - to defeat ALS.

ALS entered Jared’s life in the spring of 2013. His mother, Amy Laff, got a call from her friend Wendy that her husband Ron was going to see an ALS specialist in Philadelphia. After just one visit to the doctor and orders for a few follow up tests, the diagnosis of Lou Gehrig’s disease was confirmed.

Now, at just 47 years of age, the family had to not only figure out how to live with ALS, but they also had to figure out how to break the news to their children. As anybody touched by ALS will tell you, the disease does not just affect the person who is diagnosed, but it impacts a whole family and community. For Wendy and Ron, ALS had a clear impact on their lives and it also quickly impressed young Jared Laff, who wanted to make a difference.

Jared’s mom was not unfamiliar with Lou Gehrig’s Disease. She was already friends with Matt Doroshow, who, with an amazing student committee at Colonial Middle School, runs the 4 on 4 For a Cure Basketball Marathon to raise money for The ALS Association. Matt talked to Amy and her children to answer some of their questions about ALS and give them an outlet to be involved.

As Jared saw that his siblings could make a difference, he wanted to do something too that fit into his own personal skills and abilities. Since he was already training for his junior black belt in karate, he dedicated his training regimen to Ron in a program he called Jared’s Black Belt Promise to ALS.

The training consisted of three classes per week and hundreds of exercises and Jared, his mom and dad, and their friends asked people to support his work. Our Chapter has been inspired multiple times by young people who were leaders in a Walk to Defeat ALS®, raised money in ALS Express, or even attended Advocacy in Washington, DC, but Jared was a special case of a young person who took a personal goal and selflessly turned it over to benefit another person by creating a brand new event.

Jared started 2014 with a promise. After weeks of dedicated training, and a cast on his hand after an injury along the way, that promise is now fulfilled.

On March 22nd, 2014, Jared was able to announce his results, but he was also able to do much more. Here are the words from his mother, Amy Laff, that she spoke on that night:


East West Karate has taught Jared many important lessons.  He learned to focus, work hard, set goals, have a positive mind set and always act like a Black Belt.  Training for his Junior Black Belt at such a young age is impressive but did present some challenges.  Having the discipline to complete the workouts at home, without the guidance of his Sensei, was challenging in the beginning.  We had a discussion with Jared and explained how important it would be for him to learn to push himself, to independently work out and to realize what it means to have a strong, healthy body.  After this discussion, my little boy looked up at me and it was as if a light bulb had been turned on.  Without having to say anything further, he looked up and said, “I get it mom.  I won’t complain, and I will work hard.  I am going to do this for Ron.”


Ron, Jared looks up to you. In fact, we all do. The strength and courage with which you face each day with ALS amazes and inspires us. One of the mottos that Jared’s Shihan and Sensei used throughout his training was: NO EXCUSES.  Ron, you give new meaning to these words.  East West Karate has another motto: GOALS WE SET ARE GOALS WE GET.  When Jared decided to make a Black Belt Promise to fight ALS, we knew that nothing would stop him.


Jared achieved TWO goals.  He earned his Junior Black Belt and he surpassed his fundraising goal. 
Ron, Jared is proud to say that as of tonight, he has raised $2,201 which will be donated to the ALS Association Greater Philadelphia Chapter in your honor. 

Our next goal is to continue raising money and awareness of ALS...and we will not stop until there is a cure. 

While those words lifted up Ron and all in attendance, it was Jared’s actions that were most memorable. Not just Jared’s actions of raising money or training hard even through injury. What Jared did after he received his black belt showed the compassion and sincerity of his cause.


Achieving black belt status demonstrates that you have worked hard and refused to give up no matter the