Irwin Dunsky wrote his poem about his experience participating in the Walk to Defeat ALS in honor of his brother, Eliot. He wanted to share how empowering the walk can be for families, friends, and all supporters of the cause.

WALKING

Walking for the cure
Walking with the hope
Walking cause we can’t ignore
Walking helps us cope

ALS can try and rob us
Hurt our friends and family
But we’ll fight back for eternity
Until the cure sets us all free

You can take away the Boardwalk
Together we will find a cure
Thousands strong continue to walk
Staying committed we will endure

The day will come when ALS sleeps
Remembered as a horror no more
Know that we made a difference
Walking together for the cure

Walking for the cure

Walking with the hope
Walking cause we can’t ignore
Walking helps us cope

Irwin Dunsky
“Eliot’s Gang”

By Tom Phelan

Each year the ALS Association organizes a four day conference centered around ALS Advocacy Day. For Advocacy Day, the association organizes meetings with PALS (people with ALS) and their families, as well as with those who have already lost love ones, with congressmen and their staffers. During the meetings we tell them our story, letting them know what is like to be a family living with ALS and what they can do to help. It is one thing to know in a general sense that ALS is an awful disease, it is quite another to see it first hand which is why our presence is so important.

When it comes to research, one of the problems with ALS is that "only" about 6000 families a year in the US are devastated by a diagnosis of ALS and 6000 new patients a year are not enough to attract significant private investment in medical research given the enormous amount of money it takes to develop a new drug. The result is that ALS researchers have to rely heavily on private donations and government funding. Given the very high cost of caring for an ALS patient throughout the course of the disease, a cure or effective treatment could save a significant amount of government money especially since most of us lose our insurance when we stop working and are forced to rely on Medicare.

One little known fact about ALS is that veterans, regardless of branch or length of service, are twice as likely to get ALS. As a veteran, this means there is a 50/50 chance that my ALS is the result of my military service. Far more significant than my own story, this fact argues strongly for environmental factors playing a significant role in the onset of ALS. Given the number of veterans who have contracted ALS, I have to believe that somewhere in the data lies the answer to why veterans get it at twice the normal rate, and it is very possible that the answer to this question could provide a major clue to reducing and maybe even curing ALS. Several years ago, with the help of government funding, just such a database was created, but for this effort to bear fruit it is vital that the funding continue.

Advocacy is especially important this year because sequestration not only cut subsidies to organic hybrid seaweed farmers, it also cut fun ding for medical research across the board.

Sorry if I got too far into the woods, but fighting ALS anyway I can is now a significant part of my life. Now I'll get back to telling you about the conference and our trip.

I don't know the official numbers, but I believe over 1000 people attended the conference including over 100 Persons with ALS, family members, friends, caregivers, and many who have made battling this disease and helping ALS families their life's work. Especially poignant were the spouses and children of those who have been taken by ALS years ago who continue to attend year after year to do everything they can to fight this disease. I would be lying if I said it wasn't a little difficult seeing so many examples of what lies ahead, but this was nothing compared with the strength of spirit and warmth that was palpable at every event. Many PALS had already lost their voice, but that didn't matter as the most important things were communicated without words.

The keynote speakers at the opening night dinner were O.J. Brigance and Steve Gleason, both NFL players who developed ALS in their 30's. Both have lost their voice to ALS, but this didn't stop them from giving genuinely inspirational speeches. Gleason has become known for ending his talks with "No white flags!" Even though all of us listening know that a cure might not be around the corner for those of us who already have ALS, there wasn't a white flag in the room. If we can't beat ALS in time for ourselves or our loved ones, we certainly can do something to get closer to a cure so that someday ALS will lose its power to destroy healthy bodies and devastate families.

While Karolina and I attended conference events, Sophia and Emma spent the time with their dziadzia (aka their grandfather) walking the mall and exploring the museums. Karolina and I were scheduled to visit the offices of three congressmen, Rush Holt, John Runyan, and Frank LoBiondo. However, Holt and LoBiondo were not able to schedule time to meet with us personally so we spoke with members of their staff. Nonetheless, Congressmen Holt was very gracious and did sit down with us for a little while even though it almost made him late for a House vote! The highlight of the day was our visit with Congressmen Runyan. Since we knew we would be meeting with him personally, we had Sophia and Emma join us. It was an amazing experience for them to be able to talk to a congressmen about an important issue and perhaps play a small role in helping to pass legislation to fight ALS! Of course after the serious stuff we got footballs signed and a picture with Runyan. I was going to have the girls sing "Fly, Eagles Fly!" but fortunately calmer heads prevailed (i.e. Karolina's) and we just thanked Congressman Runyan for his time.

On the second day we did get a chance to get together with Sophia, Emma, and dziadzia to do some sightseeing before heading home. It was an exhausting two days both physically and emotionally, but we are very glad we went and will be booking our hotel for next year as soon as they set the date!

You can be an advocate too! Email Tony@alsphiladelphia.org to find out more.

By Jim Fickes

When I was asked to write for the blog for “Why I Walk” for ALS, the answer was pretty simple for me.  The first reason is that I walk in honor of my father James P. Fickes who lost his courageous battle with the disease in 2007, and the second would be to try and find a cure for those currently fighting this awful disease.  Though the reasons I have stated are obvious, I still find them to be important as to Why I Walk.

 My father passed away on August 12^th, 2007 at 1:28 pm surrounded by family and friends. Throughout my father’s battle with ALS he continued to do the things he loved; cracking jokes and still drinking his coffee. He enjoyed his life, despite being hard to understand and occasionally choking on his beloved coffee.  My father came up with “The Grateful Dudes” as our Walk to Defeat ALS team name for his love of the band “The Grateful Dead."  Born from the team name are the brightly colored tie-dye shirts that my family and friends wear each year at the Hershey Walk to Defeat ALS.  Every year, we are always told it’s the best t-shirt design!  And every year as we walk, I think of my father and the two-year struggle he had and how he put on such a brave face for my sister and I.  He believed in raising money to find a cure for this awful disease, so that other families didn’t have to go through what so many others and we have gone through.

This will be the sixth walk that we have done since my father passed, and even though less money is raised and the number of walkers that participate on our team decreases; it is important for us to continue this fight against ALS.  I walk for these families that are just beginning the early stages of ALS.  I want more money raised than before so their chances of beating the disease and staying around even longer with their loved ones are increased.  It is very important to my family and I that we keep working to find a cure for ALS.  So we do the one thing we know we can do, and that is WALK.  When we walk and raise money for ALS, we are a step closer at finding a cure and ending the long walk once and for all.

Join Jim and over 1,000 others who share the same goal of a world without ALS at the Hershey Walk to Defeat ALS on Saturday, June 1 at the campus of Hershey Medical Center. Sign up today.

By Carol Resides

My life changed on October 1, 2012, when I was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease. ALS is a particularly cruel disease that destroys a person’s ability to control muscle movement.  As the disease progresses, I may become trapped inside my body; unable to walk, talk, breathe or even blink an eye. 

There is no effective treatment for ALS, no known cause, and no cure.

The disease also does not discriminate in who it strikes and can impact anyone at anytime, regardless of their age, gender, race or ethnicity.  Military veterans are approximately twice as likely to die from ALS as those who have not served in the military. 

And it is always fatal – in an average of two to five years following diagnosis. 

This disease has robbed me from the dreams I had to travel, volunteer, and garden after years of working.  I have always been a hard worker, and was looking forward to having some time to relax and enjoy some of this nation’s great nature and get away destinations.  ALS turned those dreams upside down. I now cannot even dress myself, or take a shower, or comb my hair on my own.  Just getting a deep breath is impossible without the aid of a machine. 

I have enjoyed many activities over the years, but teaching was one of my favorites.  I loved to see the “light go on” as children learned to read.  Whether in the classroom, or tutoring at the local library, the smiles on kids’ faces when they realized they could accomplish something they had never done before always brought a smile to my face as well.  Reading to children was a delight.  Now I can no longer hold a book or speak loudly enough to entertain even a small group of children.  How I miss those days.

I enjoyed walking, bicycling, gardening, mowing the lawn, hiking a trail, quilting, card making, baking, helping a neighbor or a friend, or just sitting by a creek on a lazy summer day listening to the sights, sounds, and smells of the world around me.  All those things elude me now as I spend most of my time in a wheelchair unable to walk or stand, or bend over to smell a flower, or lift a baking pan to make some delightful treat to pass out to coworkers or friends. In one sense, I’ve become a prisoner inside my skin unable to physically reach out to those around me.  In another sense, I’m still the person I was before I had ALS….a thinker, a writer, a poet, and a dreamer.  I dream of the day when those diagnosed with ALS aren’t given their death sentence, but instead are given hope because a cure has been developed for this horrific disease.  So many great strides have been made for treatments and cures of other terrible diseases, so much more to be done.  So, although there are many things I cannot do any longer, I can give voice to those who suffer with Lou Gehrig’s disease. A voice to make others aware of what ALS is, and how one day with the help of many, a cause, a treatment, and a cure will be found.

I believe we can find an effective treatment and cure but we need your help to continue the progress we’ve made over the past few years at CDC and DOD.  Please support our 2013 public policy priorities:

•    Appropriate $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention. 
•    Appropriate $10 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD). 
•    Cosponsor the MODDERN Cures Act

Click here to join Carol and hundreds of other ALS advocates to make your story heard.

This Spring, 11 year old Kayla Wilson joined her family and other advocates to speak on behalf of her Aunt Pam, who is living with ALS. As Kayla put it, since Pam can no longer speak, she will speak for her. Governor Markell was very impressed with Kayla's support for her aunt and told her to keep up the good work.

 Following the meeting, Governor Markell offered Kayla a seat in his chair and told her she could be Governor some day. Considering all that she does to advocate for people with ALS, we have no doubt that could become a reality.

 You can join Kayla and her family and be an advocate in the fight ALS. Click here to sign up today or email Tony@alsphiladelphia.org

By Jeanette Beck

The question of why we walk can have so many responses, but for me it is a commitment to help those who live with ALS every day.  My husband, Jim was diagnosed with ALS in 2006.Everyone from the individual with ALS, their care giver, families and friends know what a difficult journey it can be trying to meet all the challenges which arise  It is not easy to watch someone you love have to live with this disease. Jim faced ALS with such courage and grace.

   We were truly blessed when the team at the Hershey ALS clinic became part of our family.  Their caring and devotion to Jim and myself was truly invaluable.  Jim looked forward to seeing everyone at the clinic and they made him feel so special.  We knew they were always there for us.  I thanked God every day for all they did.  Jim lost his battle with ALS in 2008.

   I have made a commitment to continue to work with ALS in the hope of helping to provide for the needs, care, equipment, treatment and continued research to find a cure for those who live with ALS.  It is my hope that they know they are not alone in their journey and that others care.  It is my desire to help provide a quality of life for those living with ALS until a cure is found and that there will be no need for an ALS Association, but until that day I will continue to walk because I can.

-Jeanette Beck, Walk Committee Member and Team Captain – In Memory of Jim

Click here to join Jeanette and others at the Hershey Walk to Defeat ALS or a walk near you.

This past season, running back LeSean McCoy took to the field to Fight ALS by the Yard. He raised awareness for the fight against ALS, attracting a new audience to the cause and helping to raise over $15,000 to directly go to families affected by Lou Gehrig's Disease.

On Tuesday, April 9, LeSean, Chapter Executive Director Jim Pinciotti, and Sarah Brendle, a woman with ALS from Bucks County, PA, addressed fans and supporters at Chickie's and Pete's restaurant in south Philadelphia. Special thanks goes to Yards Brewing Company and PJ's 100% All Beef Steak for their support.

By Chuck Malloy

Learning to Fight

By: Charles Malloy


"One. Two. Again!" Pop. Pop. "Let's get to work! One. Two. Focus. Do it again! One. Two," Essence shouts. Pop. Pop. My shoulders burn. My heart races. Sweat drips down my face.

"Stay in control. Trust your training," I say to myself.

"Loosen up; move your feet. Pick up the pace!" Essence shouts again, interrupting my thoughts. Pop. Pop.

I am learning how to box.  My coach, Essence Jones, is shouting boxing combinations, "Left jab. Right cross. One. Two."  Essence and I are training on a Saturday morning with boxing mitts - padded leather gloves that a trainer holds while calling out instructions.

 My father's rapid physical deterioration and brutal death in just five years from Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig's Disease, terrified me. I worried about getting sick, and I began to watch my own health more carefully, which included being very athletic. Boxing has become a good supplement to my health and fitness activities. I love the physical conditioning, focus, and discipline boxing requires. And it keeps me humble - my first sparring session as an adult left me with bruised ribs...and a bruised ego. 

"That's it. Find your groove Chuck. Follow with a left hook. One. Two. Three," Essence instructs.  Pop. Pop. Pop. "Time. Take a break; get some water," he tells me.

I look across the gym while catching my breath. I love being in the gym. The smells of leather and sweat permeate the air.  Athletes are busy working the heavy bags, shadow boxing, and jumping rope.  Watching a young fighter, I remembered the first time I learned how to box. 

It was the Christmas when I turned eleven, and it was a cold, crisp morning.  Each of my brothers and I had received a set of boxing gloves as gifts. We were so excited. 

After we opened all of our gifts my father shouted, "Boys, get your boxing gloves. Put on a sweatshirt, but leave the coats in inside!" He lit a cigarette the way he always did and went outside. We grabbed our gloves and eagerly followed him. We went to the side lawn where we played most of the time. 

My father grabbed four tent stakes and made a square boxing ring.  He tossed his cigarette to the ground and helped us put on our boxing gloves.  When the gloves were on, he said, as he demonstrated, “Okay, here is how you fight. Hands up. Chin down.  Left leg forward.  Right leg back. Crouch."

“That’s it, Charlie. Good job, Tim. Keep those hands up, John,” my father instructed.  “John, get over here and let’s mix it up. Hands up, John. Crouch. Protect yourself. That’s it.  Left jab. Right cross. Left jab. Right cross,” he said as John hit him. Pop. Pop. My brother Tim and I looked at each other - John’s punches didn’t bother my father at all. It was like he was hitting a rock. Pop. Pop. 
 
 My father was a large man and tough-as-nails. He was a Teamsters truck driver and had been an Army Paratrooper who served during the Korean War.  He was six-foot-two and weighed 210 pounds.  He had long arms and big biceps and was a good athlete.  His physical prowess, however, would be no match against a tougher, more elusive opponent - ALS. Within two years of our boxing match, ALS would begin to pound his body relentlessly and without mercy and render him a fraction of his former self.   Though ALS would break his body, it couldn't break his spirit.  He was a real fighter.

At the time of his diagnosis, the medical establishment told us that there was no specific cause of ALS. The Mayo Clinic has subsequently identified several factors that may have "modified" my father's risk of ALS including smoking, military service, and lead exposure.    Additionally, researchers at the Veteran's Affairs Medical Center and the Boston University School of Medicine have found a connection between head trauma, especially in sports, and motor neuron disease similar to ALS.   My father had suffered a concussion in a truck driving accident, and, as a paratrooper, he had been exposed to a high level of physical trauma.  So I wondered if smoking, physical trauma, and environmental factors triggered his ALS.

After my father finished teaching us the basics, he told John and Tim that they would be first to box a round.  My brothers started slowly, circling and feeling each other out, but after a few minutes they started to breathe heavily and wildly throw punches, each trying desperately to hurt the other. My mother heard the commotion and ran outside.

“Pat, you can’t let them fight like that!” she yelled across the lawn. 

“Cass, leave them alone - boys need to be boys!” he shouted back.  My father stepped in, separated them, and told them to fight fairly. "That's not boxing, get it right," he said. 

My brothers started to box again, this time with better control.  Tim and I fought next.  I figured Tim must have been tired from fighting with John, and I was cocky.  I thought that I was tough enough to beat him.  I got in a few good punches, but after a few minutes, Tim started to get the best of me. He hit me in the face a few too many times.  I got frustrated. I threw my gloves down and tackled Tim. I was a good wrestler, and I thought that I could win by wrestling. Tim threw his gloves off and we wrestled on the ground. My father broke the fight up and yelled, "Get in the house, now!"

I remember how upset I was because Tim had gotten the best of me. I had known that we weren't supposed to be wrestling - we were supposed to be boxing, but I wanted to win. I wanted to prove to my father and older brothers how tough I was. Now my face and ego were bruised. I ran into my room and slammed the door. I was really mad that I got my butt kicked.

“Charlie, are you okay?” my mother asked as she poked her head into my room, sometime a little later after I had a chance to calm down.

“Yea, I’m okay,” I told her. I wasn't really okay, but I was glad somebody cared. 

“Come out to living room and play with your brothers and sisters,” she said.  One of my favorite things to do on Christmas was to play with my siblings and with my gifts, so I felt really glad when my mother gave me an excuse to come out so that we could play. 

“Okay, mom,” I said. I ran excitedly into the living room.  My father was sitting in his recliner watching television.  I expected him to be upset with me, but he wasn't

 "You need to control that temper of yours, Charlie.  We'll make a fighter out of you yet," he said while lighting another cigarette. 

Essence's voice snaps me back to the present. "Let's get to work!" he shouts.  My minute rest is over.

Pop. Pop. "There ya' go, Chuck.  Good patience and control. You're a fighter, man. You're a fighter. "

Carol Resides and Milt Sierra of New Jersey want you to join them and be an ALS Advocate.  Click here to learn more or email Tony Heyl at Tony@alsphiladelphia.org today

Spring

by Don Farrell

Despite the icy wind, a flock of robins

found my lonely holly tree, for days they

flashed their burnt orange feathered breasts

and the red delicious berries disappeared.

Patiently, a falcon circled, and I heard

winter slip away - my little robins

promised spring with a whisper in their wings,

blue March sky agrees, I'll see another spring.

By Rebecca Pace

The Walk to Defeat ALS® is always a memorable affair.  Ask any patient, family member, loved one, volunteer, friend, or supporter of the cause.  It happens seven days a year for our Greater Philadelphia Chapter, in seven different locations throughout our region with seven different celebrations of hope and light for a new year – all of which brings us one step closer to Defeating ALS. 

Walk days are also memorable  for the staff members who plan each event.  But it is not only one day – each Walk takes many  months of planning.  The experience is truly rewarding.  In my first two and a half years with the Chapter, I helped our incredible volunteer Walk Chairs and Committees plan the Rehoboth Beach and Bloomsburg, Jorge’s Walk to Defeat ALS® events.  Working closely with these volunteers clearly showed the dedication and motivation behind the stories that connected these folks to ALS.  Brian and Mary Lou Allen, along with Mary Lou’s mother Mary Ann Wollter, wished to get out there and do something in memory of Mary Ann’s husband Gene.  A little spark ignited after they participated in the Ocean City Walk, and the desire to replicate the day of hope turned into the Rehoboth Beach Walk to Defeat ALS®, which marked its 5^th year in September 2012.

Rosalba Snyder, whose father Jorge Rodriguez passed away from ALS, came to me in early 2011 also saying she wanted to “do something.”  And with a little encouragement and Chapter support, the Bloomsburg, Jorge’s Walk to Defeat ALS® was born, raising over $50,000 in its second year.  The passion of volunteer Walk Chairs like Rosa and the Wollter/Allen families made those days exceptionally memorable for me as a member of the Chapter events staff. 

When I was given the opportunity to work on planning and executing The Greater Philadelphia Walk to Defeat ALS, I couldn’t have been more thrilled to take on the project.  The Walk had a growing committee of people who inspired me each day in the months leading up to the event at Citizens Bank Park on November 5^th.  The spirit of Families like the Delaneys - Karen Shideleff who has ALS, and her sister Kathy Thomas, both of whom jumped on the committee,  made a huge difference.  Gerry Voit, a devoted husband who lost his wife Kathryn just recently to the disease, was more determined than ever in his eleventh year of involvement. He took home the award for Highest Individual Fundraiser while Karen and her team, Delaney Strong, took home the award for 2^nd Highest Fundraising Team.  To see this kind of energy from people so deeply affected by ALS was quite moving.

Other aspects of the event planning process and Walk Day are especially inspiring to the events staff.  We all followed the growing donation totals for 11 year old Kayla Wilson, as she slowly reached the Extra Mile Club goal in honor of her aunt at the Rehoboth Beach Walk.  I will never forget the joy of ten year old Kailea Heston and her six year old sister Teagan Heston tying for first place for the Highest Youth Fundraising Award at the Greater Philadelphia Walk .  Walk energy is reinforced by  teams of tens and even hundreds in bright shirts proudly coming together, giving and sharing and doing what they can to help.  Families at Citizens Bank Park  continuously thanked staff, but  I wanted to  thank them for all they do and continue to do to help us reach our common goal.  Without the enthusiasm of our Walkers, volunteers, and supporters who continue to inspire us in moving forward each day, we could not do what we do.

The Walk to Defeat ALS® is a special seven days, and truly rewarding each step of the way.  Your Events Staff thanks you infinitely, and we can’t wait to see what the 2013 Walk Season holds in store.

Click here and make sure to sign up today for a Walk near you!