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Izzy
8/6/2014

By Amanda Hudzik

I spent last weekend going to places in my neighborhood to support the Walk to Defeat ALS. Some were very nice and I was able to post a lot of my posters and signs for the Ocean City Board...Walk to Defeat ALS on Saturday, September 20th.

After going to businesses, I also went around my town home complex with my son. We came across a little girl named Izzy who said to her mom "I have change in my piggy bank" and then left and came back to donate $2.07! She was the sweetest and proudly signed her name on a paper sneaker.

I look forward to going out again and spreading the word and I hope to see a lot of supporters in a few weeks at the Walk to Defeat ALS!

 

 

Thank You to ShopRite and their Customers
8/5/2014

 

     

 

The ALS Association Greater Philadelphia Chapter is proud to recognize the work of ShopRite and its customers in Southern New Jersey for raising $47,578.06, which will go to support the upcoming Ocean City Board…Walk to Defeat ALS® on Saturday, September 20. This incredible sum was raised through eight Village Super Market stores in Galloway, Absecon, Landis, Hammonton, Somers Point, English Creek, Marmora and Rio Grande, all of which participated in selling paper sneakers to customers to raise money and awareness for ALS patient care and research.

The fight against ALS is personal to Village Super Market. A long time associate’s mother was diagnosed with Lou Gehrig’s Disease in 1999. Feeling helpless as the disease progressed, the associate and her family were instrumental in launching the Ocean City Board…Walk to Defeat ALS® in 2002. Following that first walk, in 2003, the Sumas Family, which operates Village Super Market owned ShopRite stores, started to sell paper sneakers to support the cause. Since 2003, Village Super Market and ShopRite customers have been the presenting sponsors for the Ocean City Board…Walk to Defeat ALS®, and with this year’s efforts, they have combined to raise over $260,000 since they began their sponsorship.

“We truly appreciate the incredible support from ShopRite and its customers on behalf of all people with ALS and their families,” said Jim Pinciotti, Executive Director of the Greater Philadelphia Chapter. “They understand how devastating this disease is and have become a valuable partner in our mission.”

The Marmora ShopRite raised the most money at $9,353 and altogether, the eight stores combined to increase donations by 21% over last year.  Most of the money was raised at the registers and stores had signs featuring the promotion at the registers and throughout the store. Some store locations took their involvement to another level by holding car washes and bowling nights.

Funds raised from ShopRite and its customers will support vital research and patient programs at the ALS Association Greater Philadelphia Chapter, including multidisciplinary clinics, in-home care, wheelchairs, and communication devices. The Greater Philadelphia Chapter supports over 850 people with ALS in eastern Pennsylvania, central and southern New Jersey, and all of Delaware.

If you'd like to be a part of a Walk to Defeat ALS, visit www.gpcwalktodefeatals.org today.

Friends Against ALS
7/31/2014

Pictured above from left to right - Donna Cleary from the Greater Philadelphia Chapter, Lisa Gabel, Brian Buchert, Chapter Executive Director Jim Pinciotti, Tim Lambert, Lauren Buchert, Hector Amengual, Scott Gabel, Erica Erb and Doreen Gabel. "Friends" Committee members not pictured are Matt Matlack, Neil Fox, Rick Solazzo, Jeff Stapleton and Steve Boyer.

Members of the Friends Against ALS committee recently presented a check to the ALS Association Greater Philadelphia Chapter for $15,000. This generous gift is possible due to a golf tournament at Limerick Golf Club.

The Friends Against ALS committee was created by Brian Buchert and Hector Amengual, who decided that they wanted to put together a golf outing to raise money and awareness in honor of their friend Bruce “Turk” Gabel, of Boyertown, PA, who passed away from ALS in 2012 at the age of 54. 

“We had no idea that a year after starting this event to honor Turk that so many good people would get involved to help grow our little idea into such a hugely popular event,” said Brian Buchert. “To date, we have held two golf tournaments and a Beef ‘n Beer and have raised $31,000! It has turned into an awesome group of Turk’s family and friends that have all come together to work very hard to keep his memory alive and well.”

Funds raised from the Friends Against ALS will support vital research and patient programs at the ALS Association Greater Philadelphia Chapter, including multidisciplinary clinics, in-home care, wheelchairs, and communication devices. The Greater Philadelphia Chapter supports over 850 people with ALS in eastern Pennsylvania, central and southern New Jersey, and all of Delaware.

This donation will go to the Bruce "Turk" Gabel Named Fund, which was established to help support the Greater Philadelphia Chapter's mission in the fight against ALS. Click here to learn  how you can set up a named fund or email Jeff Cline at Jeff@alsphiladelphia.org

Eat to Defeat
7/28/2014

One good deed inspires another and that is especially true with the Linton family of Bucks County, PA. Earlier this year, 9 year old Jared Laff was training to get his junior black belt in karate. Just as he was in the midst of training, he learned that a family friend had been diagnosed with Lou Gehrig's Disease. When he found out that somebody close to him was living with ALS, and what that meant, he took it upon himself to use his training to raise money and awareness to help fund patient care and research in support of his friend.

That was this spring. Since then, Jared hasn't stopped his crusade against ALS and neither has his family. This past June, inspired by Jared's own efforts against ALS, his aunt Debra Linton found her own way to get involved. She put together an Eat to Defeat ALS fundraiser at Zoe's Kitchen in Newtown on June 1 and was overwhelmed by the outpouring of support.

Just like Jared, Debra planned and organized, as you can see from her picture. In addition to getting funds through food receipts, she also held a fantastic raffle of good and services. A the same time, she was able to educate her community about Lou Gehrig's Disease and the services available through The ALS Association Greater Philadelphia Chapter.

At the end of her night, Debra counted up her totals and was excited at the result. She raised $265 from the food sales at Zoe's Kitchen and an additional $375 from the raffle and bracelet sales! Raising over $600 for the Chapter will go a long way to funding services like the Howard I. Abrams In-Home Care Program, the Accessibility Program, mutidisciplinary centers, and more. Thank you to The Linton/Laff family for working hard to raise money and awareness for ALS families!

If you are inspired by Jared and his aunt Debra, or if you have your own personal inspiration in the fight against ALS, and would like to hold your own event, email Ashley Hendrix to get started at Ashley@alsphiladelphia.org The funds you raise will make an immediate difference in the lives of families right in our communities.

 

 

 

 

I Wear a Good Mask
7/15/2014

By Chuck Malloy

Note: The Malloy family have participated in many ALS activities over the years, including Advocacy in Washington, DC; the ALS Express Bike Ride, and the Walk to Defeat ALS. Just like team Pat's Posse, you can join a Walk to Defeat ALS near you at www.gpcwalktodefeatals.org

 

...

I didn’t cry at my father’s funeral. I didn’t cry at the viewing. I didn’t cry when the funeral procession drove down our street and through the neighborhood. I didn’t cry when the priest gave my father the final blessing or when the military honor guard played taps or during the rifle salute or when the flag was presented to my mother.  I didn’t cry when I threw a flower on his casket or when we left the cemetery. I didn’t cry on the way home from the funeral or when everyone met at our house.

I didn’t cry.  But I wanted to.  I felt deeply the heavy and powerful lumps inside my chest that made their way into my throat; I felt the tears burning behind my eyelids; I felt my lungs breathing heavier. I wanted to fall on my knees, curse God, flail my arms, do anything to release the powerful feelings that were inside of me.  But I didn’t. I held back my tears and kept my composure.  My mask was fully in place.

I remember taking my father's coffin from the hearse at Saint Michael the Arch angel Church.  It was spring and the sky was clear and sunny. I was 19. My brothers and I were pallbearers. “Be careful on the church steps, they are steep,” the funeral director said. I was nervous, but made sure that I didn’t let go. One step, then another. Move forward, I told myself. One step, then another.

When we entered the back of the church, everyone turned toward us in unison. A priest met us there. He blessed the coffin and we walked down the long aisle toward the altar.  We placed our hands on the coffin as we walked. The strong smell of incense permeated the air. I loved the smell of incense.

The church was silent. I had a strange feeling of sorrow and pride - sorrow for the loss of my father but pride that I was representing him with my brothers.  I held back my tears.  I recognized the faces: cousins and family members, friends and neighbors, doctors and nurses and counselors, teachers and priests.

I imagined what people were thinking when my eyes met theirs: “I am so sorry, Charlie. It’s okay. The pain is over now. You should be proud.”  I longed for someone, anyone, to reach out to me and whisper these words, “It’s okay.” But no one did.

 I was working at Hechinger’s during the last year of my father's illness, my second year in college.  I had to have a job. Money was tight at home and I had to pay for school.  

Lou Gehrig’s Disease had taken a terrible toll on my father’s body.  He couldn’t eat or swallow and lost a lot of weight. He had difficulty taking in air and breathing. The doctor told us that death was inevitable, that it was just a matter of time.

In my mind I played out scenarios of how he would die: at home with my family and me frantically trying to restore his breathing after he choked on a piece of food; in a hospital with the controlled chaos of doctors and nurses and code carts and loud alarms; in the middle of the night, alone, in the dark, gasping for air. I hoped for a peaceful death - one where my family and I would be there to provide comfort.

But none of these scenarios played out.  He died of a pulmonary embolism in the hospital, alone, at night.  I don't know if he was gasping for air or passed peacefully.  None of us were with him.

 I knew my father had died the moment my boss called me to the warehouse desk. There was something in his voice, “Chuck, your brother called and you need to go home. It’s important.”  I punched the time clock and walked through the store.  People moved in slow motion. The aisles lengthened as I walked. There was a searing sound in my ears.  I kept my composure and measured my steps. One step, then another. I didn’t cry, but I wanted to. 

It took me a long time to get home. Cars moved slowly. Stoplights were frozen. I heard the traffic light timer. Tick. Tick. Tick.  As I turned down our street, I noticed that only my brother Tim’s car was there. The searing sound in my ears returned; my heart started to beat fast. I approached the front door. I knew what lay beyond the threshold. One step, then another. 

My brother Tim met me at the door. “Charlie, let’s go into the back room.”

We sat down on the small couch near the front windows.  I could see the weariness in his eyes - they were blurry and red. He sat on my left, close to me. He took a deep breath and told me, “Dad died last night. I am sorry.  He’s not suffering anymore.” There was a long pause as those words began to reverberate within me. Dad died. “Mom is on her way home; Annamarie is in her room; John went to the hospital.  Somebody needs to pick up Kathleen from work.” 

“I’ll pick up Kathleen,” I said automatically.

My sister Annamarie ran into the room and into my arms. “He’s not sick anymore, Charlie. He’s not sick anymore,” she whispered as she wept in my arms.  I didn’t cry - I was frozen.

I thought it was a good idea for Annamarie to go with me to pick up Kathleen. She needed to get out of the house and be there for her sister. “You should come with me to pick up Kathleen," I told her.  While driving to CVS, I wondered what I was going to say to Kathleen. Dad wasn’t supposed to die - he was in the hospital to get a feeding tube. Kathleen was excited about going to visit him that evening; my brother John had been planning to take her.  She was going to be shocked and devastated.  God, this was awful. 


 “What time are we going to see Daddy?” Kathleen asked as she got into my car. I was calm as we left. My sister Annamarie was very quiet, just staring out of the car window.

I didn’t want to lie so I said, “We just need to go home.”

I pulled into the driveway and parked the car. She saw some of the neighbors. “What’s going on?” she asked.

I paused and turned toward her and put my hand on her knee. “Kathleen, Dad died last night” I told her. She screamed, “No! No! No!  I want my father... I want my father. No! No!”

She ran across the front lawn toward the street. My sister Annamarie and I ran after her.  Our neighbor Donna Taylor caught her in the middle of the street.

“No! No! Where’s Daddy? I want my father,” she screamed as she fell into Donna’s arms. We tried to calm her down.

“Where’s Daddy? I want my father…I want my father.”  I felt bad that I had told my sister in the car. I didn’t know if it was the right decision, but it was all I knew to do. 

I had a sense the last time I saw him that my father was going to die soon. The night before, my mother and I visited him at Hahnemann Hospital in Philadelphia. He was scheduled to have a feeding tube inserted. He was on oxygen to help him breath. I remember dabbing ice on his lips to keep them moist and holding up the ice cup so he could take a sip.

It was getting late, and we needed to leave. I didn’t want to leave though. Something was wrong.  My father struggled to ask me if I knew how to get home. He was a Teamsters truck driver and knew the roads in Philadelphia like the back of his hand.  I told him I knew how. He whispered, "Market Street...95...North." He was watching me; he knew I was upset.  He looked at me and gave me a thumbs-up sign.  That instant I knew he was going to die. He was calm, almost at peace. I think he was tired of fighting. I gave him a hug and a kiss and told him I loved him. I didn’t cry; I needed to be strong. 

He died that night.

I didn’t cry when my father died, but I used to cry. I cried with Franciscan Brother Mark, who was one of my high school teachers. Brother Mark had become a mentor and friend while my father was sick. I visited Brother Mark often, especially as my father’s disease progressed. There was usually a triggering event, a breathing episode with my father or a fight with my mother or a sibling or a problem that I had at school or work. Brother Mark would listen patiently and dispense advice and counsel.  During one meeting Brother Mark surprised me.

He pulled his chair closer and placed his hand on my shoulder. “It’s normal to cry, Charlie,” he said in a soft voice. “It’s okay.”  I had always held back my tears with Brother Mark. I wanted him to think that I was strong, that I could handle all of the responsibility - the family, the school work. I was tough. But Brother Mark was persistent. “It’s okay. Let it come out.”  He told me that I had had to become a man at such a young age; that it was okay to put aside the responsibilities, the desire to be tough and strong, at least for this moment.  He said a prayer over me, asking Saint Francis of Assisi to protect me.

Slowly the tears welled up in my eyes. “I can’t handle it anymore,” I told him. “I am afraid of losing control and failing.”

“It’s okay, Charlie,” he said. I began to sob, then weep openly. “Let it all come out. It’s okay.”

I used to cry. I remember the night my father had a severe breathing attack a few months before he died. I was studying when I heard my mother yell, “Pat! Pat! What’s wrong?”

I ran into the living room. He was sitting in the recliner trying to grab his throat. “I…I…can…can’t…breathe…air.” These bouts became more frequent as the disease progressed. We tried to calm him down so that he could take deep breaths, but we couldn’t calm him. During these attacks he became anxious, afraid of dying.  

“Let’s get him into his bedroom with the oxygen tank,” my mother shouted. She then said to my father, "It's okay, Pat. Relax. Breathe," while gently rubbing his back.  I told my sister Kathleen to call for an ambulance. Annamarie ran across the street to get our neighbor Ted Taylor. We carried my father into his bedroom and sat him on his bed.  It was chaotic. I was nervous. I was afraid that he was going to die. But I remained calm.

My father yelled at me to turn the oxygen on.

“Dad, I got it,” I said. If I made a mistake, it could kill him, I thought.  I turned the dial slowly and deliberately. I heard the flow of the oxygen, and my father took in a deep breath.

I hated the sound of the ambulance coming down our street because it always portended disaster.  Several neighbors gathered on our porch. It was dark and cold.  The paramedics loaded my father into the ambulance. I could see that he was scared. He was afraid of death. He was fighting for every breath. His eyes were hollow. His body was skeleton-like. But he was breathing.

Tears welled up in my eyes. I started to choke up. My lips trembled. My body shook. I had to get away.

I couldn't run to the right.  There was a crick.  I couldn't run to the left.  There was a house. So I ran straight ahead and there was a baseball field.   I ran as fast as I could.  I ran up a hill and through the woods. I stopped at the backstop in the field. I sat down, leaned against the fence, and screamed. I was angry. I was scared. I cried and screamed as loudly as I could. I wanted someone to hear me, to see me, to comfort me, to say everything would be okay.

But no one came.

I started to run again, this time sprinting back and forth through the field.

I ran and I ran and I ran.  Tears and snot ran down my face.  My lungs burned.  Time and space blurred.  Finally, I collapsed on the field, gasping for air, drained and empty, but thankful to have finally let it all out.

I looked up at the cool night sky and took in a deep breath.

A few minutes later - I don't know how long really - I got myself together and drove to the hospital to see my father; fortunately his breathing episode wasn't life threatening.  He was admitted for observation and discharged the following day.

A few months later, my father died.

I'd like to say that my father's death was a relief - that I found some sense of peace or joy, but it wasn't like that really. I was happy that he wasn't suffering anymore, but I didn't find the relief that I had anticipated.  The thing about caring for a person with a terminal illness is that you always have a job to do - you know your role and you have a story.  As horrific as my father's rapid decline in health was, I always could always rely on my role as his caregiver. It was my story, and I got comfortable in this role. I knew my place. I knew my job, and I was good at it.  So when my father died, a part of me died with him.  My job was over.

But a new story was born…almost immediately. There was no peace and there was no joy, only more problems, responsibilities, and anguish. Before I knew it, I had a new job.  I had become a son trying to fill the gap from the death of my family's patriarch, a student, a person with drive and ambition, a person who could weather storms and overcome obstacles, and a survivor. The setting for my new story was a world that was cruel and threatening - something to be managed, navigated, and controlled, but not lived, at least not lived authentically. So I put on my mask to navigate life's treacherous waters. I had to.  My authentic self - with all of its messiness, quirks, fears, complexities, contradictions, and feelings - would have to be stowed away during this part of my journey. 

    I didn't know it then, but I do know it now - on that cold night in the baseball field when I felt helpless, scared, and screamed to the heavens, and when I cried like a baby with Brother Mark, small, miniscule cracks had formed in my mask, imperceptible even to me. These cracks grew slowly and methodically over time. They grew wider with each passing year and each life experience, both good and bad; they grew vertically and they grew horizontally. Each new crack created more cracks that would eventually grow wider and wider.  There was an indescribable life force within me causing these cracks to form and to grow. What was it?  Was it God’s inner light that the mystics speak of or was it simply grace?  I don't really know, but one day my mask just fell away, and I was me.

Racing with Denny
7/8/2014


By Denny Lupfer


My name is Denny Lupfer and you may have seen me this past June at the Hershey Walk to Defeat ALS®. I have been married to my wonderful wife, Darla, for 39 years. I have a beautiful daughter, Ali, who is married to a great guy, Shane Staley.  They have blessed us with two precious grandchildren, Avery, who is 6 years old and Wren, who is just 9 months. I am also currently living with Lou Gehrig's disease.

I am the oldest of three boys with my younger brothers being Allen and Timmy. I was born in 1954 to wonderful parents, Charles and Pauline and grew up in Perry County on the outskirts of the small village of Shermans Dale, Pennsylvania. It is about 20 minutes north of our state capital, Harrisburg.  Our family ran a dairy farm along with 300 acres of fields to tend which certainly helped me to learn a good work ethic early in life!

Our family has owned Lupfer’s Grove, a picnic area, for over 70 years. It has been in the Lupfer family since 1894. It is a place for our community to hold events such as carnivals, auctions, car shows, Sunday morning church services and family reunions. The Grove also has a small seasonal campground and a beautiful ball field where hundreds of boys (and a few girls) have had the experience of the thrill of victory and the agony of defeat while participating in the Little League baseball.  I have had the pleasure of taking care of the grounds at Lupfer’s Grove  and have found it very rewarding to a provide a place of so much enjoyment for our community and families to come together.

My hobbies have varied over the years. In my younger days I drag raced at South Mountain Drag Way. I also coached a midget baseball little league team of 12 year olds for 13 years. The highlight of those years was helping coach the very first team from West Perry win the championship title of the Central Penn Tournament in 1988.  I enjoy watching sports on TV. I took up the game of golf late in life and will continue to play for as long as I possibly can.  I spent a lot of time looking for antiques at shops and flea markets, especially items for the 50’s and 60’s. I have a showroom at the Grove where I display many of my treasures I’ve found!  The building also houses my classic cars. In 1980 a group of my friends and I started the Perry County Auto Meet at the Grove. It brings in hundreds of vehicles every year. The Shermans Dale fire company puts on the event now. It is one of the largest one day shows in central Pennsylvania.   All of these events over the years have brought me great joy, but now my favorite activity is being with my loving family and enjoying time with my beloved grandchildren.

In the winter of 2013 I noticed my speech was slurred, especially when I was tired. This problem continued to worsen so I went to my family doctor.  Multiple doctor visits ruled out many of the possibilities of what was causing my speech defect. Finally we got an answer, but it was one we never imagined. I was diagnosed with ALS on August 22, 2013 at Hershey Medical Center by Dr. Zachary Simmons.  My life changed that day. There were many tears and disbelief that this could actually be happening to me. Everything I used to take for granted I now see with new eyes.  My time with family and friends is priceless.  My wife and I have come closer to the Lord. He is the ground of our peace. With him I can face any adversity.

When it came time to start fund raising for the Hershey Walk to Defeat ALS®, I knew I wanted to be part of it. I was fully aware of how devastating this disease is, physically, emotionally and finically. I wanted others to be made aware as well. There is a need to “Race for a Cure,” so that became our slogan and my 1967 Camaro dragster became the mascot for Team Racers!  We were anxious to put a team together and started by telling family and friends of our goal to raise at least $1000.00.  There are no words to express our gratitude to such an outpouring of support that was shown to us.  With the help and generous donations of loving family, friends and a compassionate community, our team raced past our goal and raised over $22,000.00!!!!!  Our hearts are overwhelmed by their support!

The day of the walk dawned sunny with a bright blue sky. Two busloads of supporters and our Shermans Dale Fire Truck along with the fire fighters accompanied us to Hershey for the walk. What we experienced that day is something we’ll never forget. It was heartwarming to see so many supporters, not just for myself, but for all people affected by Lou Gehrig’s disease. People with ALS are not giving up…they are fighting against this awful disease together. They were there, participating in the walk to raise funds for research and awareness. Some ALS fighters, like me, needed a cane, some rode in wheelchairs, and others walked as long as they could but they were there, full force, racing for a cure!

Thank you for this opportunity to share my story and I must end with a BIG THANK YOU to the ALS Association Certified Treatment Center at Hershey Medical Center, known as “Best Care Anywhere!”  Their compassion and wonderful care makes this tough journey a little easier to travel.  Our fondest wish is this money raised along with their wisdom and research that a cure can be found, if not for me, for future generations.

Until then, we will continue racing and we hope you will race for a cure at Walk to Defeat ALS® near you.

 

 

My Mother's ALS
6/26/2014

By Linda Angelo

I am writing this to explain the need for the Delaware legislature to approve funding for the ALS Association.  My connection to this issue is personal.  I sat with my mother, holding her hand and monitoring her pulse, as her battle with ALS ended 20 years ago.  I watched her struggle for five years as her body betrayed her, first in the loss of the use of her hands, then arms, feet, then legs, and then eventually her ability to speak and swallow. This resulted in her spending over two years totally bed-ridden, being fed a nutritional supplement through a feeding tube.  With the minuscule movement of her head that she could still control, she fought to communicate with us via a communication board which my father made himself, and a small laser pointer attached to a visor on her forehead.  It was devastating for me as a daughter and a mother to see her unable to hold, sing to, read to, or hug or kiss her grandchildren.  But her spirit remained strong even to the morning of the day she passed, when she desperately wanted to make sure that I got a family heirloom tablecloth when she was gone.

When the hospice nurse came that day as her body was shutting down, she said all we could do for her now was to increase her morphine and keep her comfortable. As the family sat with her that night listening to her final breaths (sometimes referred to as the "death rattle"), we prayed that there would someday be hope for others struggling with this devastating disease.

While advances have been made since then, much more continues to be needed for patients and their families.  As a mother of three, and all of them in college at the same time for a couple of years, I know all about budgets!  But please consider this much needed aid and vote to support this funding. Every dollar makes a difference in the lives of ALS families.

Heather's Heart
6/25/2014

 

Heather Hildebrand was living the dream. She had the job she wanted, a house, a dog, a husband and a baby on the way. Before her baby daughter was born though, Heather started falling. What seemed at first to be a likely normal issue with pregnancy turned out to be something much more serious.

Even though Heather was not very familiar with ALS, she was very knowledgeable when it came to health issues. After graduating in the year 2000 as valedictorian in her class in the small town of Elizabethville outside of Harrisburg, Heather went away to college at West Chester University to study medical laboratory science. She took to her major quickly and enjoyed gaining more expertise in her field.

In order to graduate, Heather had to do a year of clinical work at a hospital. Luckily, she was able to do her clinical work near home at York Hospital. Her hard work got her noticed at the hospital and when her clinical year was coming to an end, she was able to get a position in the Microbiology laboratory. Even though most people probably don’t even know that a Microbiology lab exists, Heather was thrilled because it was her favorite part of the lab and it was an exciting opportunity for her.

Microbiology can be a fascinating line of work, but, according to Heather, it is not necessarily something most people would pick as their first career. As she describes it, a lot of her work involved getting samples from doctors who took swabs from infections. Then she could use her expertise to let them know what antibiotic would work best to kill the infection. To others it could seem like gross work, but to Heather, every day was filled with new learning opportunities and an ability to save lives.

With her career starting off well, Heather moved on to her next big steps in life. She bought a house in York, PA and got a dog as well. Her life seemed to keep moving up and up, like a stairway of positivity, and it only got better when she met Steven in 2008 on Match.com. Their personalities meshed right away and they enjoyed each other’s company and jokes.  Steven’s jokes made it hard for Heather to take him seriously when, two weeks before their wedding in 2010, one of his friends called her to say he broke his ankle at his bachelor party. She can laugh about it now, but she wasn’t laughing at the time when he was on crutches at their wedding!

The steps of Heather’s life continued to climb upward and she made the choice a few months after the wedding to have gastric bypass surgery, which she had been thinking about for a long time. Since that surgery, she has lost 150 pounds and her husband, who also had the surgery done, lost 178 pounds. They were both glad to see the difference it made in their lives, which were already happy with their home, dog, career and each other.

The natural next step was a big one, but one that made Heather and Steven’s lives even more complete. Heather gave birth to a beautiful baby girl on December 26, 2012, missing having a Christmas baby by just a few hours. Even if their daughter wasn’t to be born on Christmas, it was still the best gift they could hope to receive. Yet just as Heather embarked on the best step yet in her life, she had her first fall.

Unfortunately, her first fall would not be her only one.

While she was pregnant, Heather kept falling and stumbling, and her doctors were sure that she was just off balance due to her pregnancy. After all, your joints can get loose and your center of gravity shifts while pregnant, so falling was not necessarily that abnormal. Heather had a normal delivery, but after the epidural, she felt like she never fully recovered and her body felt sluggish.

As Heather returned to work in the Microbiology lab, she and her coworkers both started to notice things like her falling and a drop foot that became more pronounced. After years of working in healthcare, she was well aware that something was wrong and she had also developed mindset to learn about a problem and find a way to fix it. After all, that was her job.

Doctor after doctor ran test after test. The complicated story of an ALS diagnosis is one that nearly ever ALS family understands all too well. A family doctor said it might be multiple sclerosis and a local neurologist thought that it could be a vitamin deficiency due to the gastric bypass surgery, but the blood work and EMG tests ruled out those possibilities. It was a neurologist at Johns Hopkins who first suggested ALS, but he and other doctors wanted to run even more tests to be sure. Heather was tested for Pompe disease, which would not have been a great diagnosis, but she knew it would be better than ALS. That test also came back negative. With nothing else to test for as an alternative, Heather was diagnosed with ALS on November 5, 2013, almost a full year since she first started feeling symptoms but less than a year since her baby girl had been born.

Naturally, Heather was devastated by the diagnosis. She did not have ALS in her family, but she understood the implications very well due to over a decade in the healthcare field. She also understood the importance of going to her local ALS Treatment Center at Hershey Medical Center, where she met with Dr. Zach Simmons.

“Meeting everyone at the clinic and hearing them talk has been the best thing for me,” said Heather. “It has helped me come to terms with my disease and understand that I really am “living with ALS.” I try to remember that people a lot younger than me die every day and that there are people out there who are in pain and suffering, which I am not. I have a beautiful 18 month old who brightens  every day, the best husband, and a supportive group of friends and family that get me through any challenges I have today or that will face me in the future.”

Right now, Heather uses a walker at all times when she walks, though she also uses a wheelchair when necessary. Her hands are very weak and she needs help bathing and dressing. She also speaks slower and softer than she ever did, but she still considers herself lucky that her lungs are working fine. Recently she stopped working at the job she trained years for, but she still has a great outlook on life and happily exclaims that she is becoming an expert at The Price is Right. Her dog is happy to have her home all day and they both eagerly wait for her daughter Elsie to get home from daycare. Even though she knows what ALS can do to her body, Heather has a lot to look forward to every day.



This year she found another thing to look forward to with the Hershey Walk to Defeat ALS®. The clinic team at Hershey Medical Center connected her to the Chapter and she created Team Derr based on the name her brother called her when she was very young because he couldn’t say Heather. After weeks of talking to friends and family, Team Derr raised over $5,000 and Heather cut the ribbon at the start. The team even celebrated at the walk with cake. It was a bright Saturday at the Walk made even brighter by the hope and warmth of Heather, Steven, Elsie and all of Team Derr.

Recently Heather’s parents took the family on a vacation to the Dominican Republic. While everything about the trip was uplifting, her favorite part was being able to walk unassisted in the pool while she held Elsie. She can raise all of the money in the world, but nobody can put a price tag on a mother holding her baby.

Heather’s life has been full of steps moving upward and it may seem that ALS has made her fall down all of those steps. Yet when you see her with her daughter and you see the light and hope she feels every day in her life,  it’s clear that she intends to make every step a step forward, even if she stumbles a bit along the way.

Why I Advocate
6/19/2014

By Karen Ann Davis

I am writing to my legislators in Pennsylvania today in the hopes that they will be willing and able to convince the powers that be in Harrisburg to not only continue to fund the  ALS Association and  families in Pennsylvania (which line item is currently $350,000) but to hopefully increase the line item in the health budget to $500,000.

As the daughter of a woman who was diagnosed with ALS on her 80th Birthday, I got to experience firsthand all the caring and support that the ALS Association Greater Philadelphia Chapter gave to both my mother and her family.  My Mother was a tiny woman with a big heart and immeasurable energy and was taken down quickly with this disease.  The ALS Association offered not only medical support (wheelchair; motorized step chair, hospital bed, visiting nurses and other supplies), they also had aides who came in and assisted in bathing her and preparing light meals, along with emotional support.  These aides were extremely valuable since I had to continue to work full time and could not be there 24/7 the way most of the patients with this disease require. Even after my Mom’s passing, they have still continued to communicate with me and have offered my family transitional grief counseling.  Transitional in the sense that when a family member has such an overwhelming and demanding disease, much of the family’s lives are centered around caring for them that it leaves a huge void in their lives not to mention the emotional loss.

Less, you think that I am not willing to put my efforts into helping other families in their continuing fight for their loved ones, I want you to know that I too have continued to support the ALS Association in appreciation for what they did for me and my family by participating in their annual Walk to Defeat ALS at Citizens Bank Park.

Please join us in supporting funding in the Pennsylvania state budget.

 

To learn how you can get involved with ALS advocacy, email Tony@alsphiladelphia.org

 

Thumbs up for Gavin
6/16/2014

 Vickie Mitsdarfer doesn't yet know what her 10 year old son Gavin will do as a career, but she has a good indication already of the kind of person he will become. Character is often shaped by challenge and adversity, and seeing a family member live with ALS is certainly a challenge for anybody of any age.

So when Gavin's father was diagnosed with ALS in 2012, he wanted to find a way to help his dad. Then, through learning about Lou Gehrig's Disease and participating in events, he wanted to make sure that he could make a difference in the lives of all people with ALS.

This year, Gavin saw an opportunity to get involved with his family's team at the Hershey Walk to Defeat ALS. While some walkers raise money at work, Gavin organized at school. He is involved with the KKids at school, which is part of the Kiwanas, and he and the group have long been active in the community to clean up trash, plant flowers, and send books to kids overseas so that they have the resources they need. With that experience, Gavin realized that people with ALS also need resources and he could do something to make sure they had them.


Even though the Hershey Walk to Defeat ALS is in June, Gavin began fundraising back in the winter. In February,  his aunt had a sandwich sale and Gavin walked his neighborhood with an order form and sold a lot of subs to raise money. His neighborhood friends learned more about ALS and together they made artwork that they sold to help contribute to the totals.

It wasn't just the kids that got involved though. Gavin shared his story at school and the teachers had a dress down day to raise money and awareness. They even had a salad bar for the teachers with the kids at the school bringing in food and family members, including Gavin's grandmother, making special dishes to sell.

Altogether, the events and fundraising took months, but all of Gavin's hard work paid off in a big way. When Walk day finally came on June 7, he had raised over $1,000! Even with all of his hard work, this thoughtful and dedicated young man gave credit to everybody who helped along the way, including his family, his neighbors and his teachers. In the end though, it was 10 year old Gavin who motivated people with his story and organized so many people to get involved.

One question Gavin and his friends might have ask however is "How much of a difference does $1,000 make?" The answer is, of course, that it makes a tremendous difference! That money can support nearly 500 hours of in-home care services, or multiple communication devices so that people with ALS can have a voice, or help somebody afford a ramp so that they can continue to be mobile in their own house. Gavin, and the thousands of others who participate in the Walk to Defeat ALS, are making an immediate impact in the lives of hundreds of ALS families, and for that, we give him our thanks.


Sign up for a walk today at www.gpcwalktodefeatals.org or, you can still contribute to a Hershey team at www.hersheywalktodefeatals.org


Summer 2014 Blogs 

Izzy

Thank You to Shoprite and their Customers

Friends Against ALS

Eat to Defeat

I Wear a Good Mask

Racing with Denny

My Mother's ALS

Heather's Heart

Why I Advocate

Thumbs Up for Gavin


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

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