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My Visit to Harrisburg
5/29/2013

By David Cole

David with his mom presenting an ALS Advocacy Award to State Representative David Millard of Bloomsburg, PA. They were joined by Dave Ihde, a person with ALS, State Representative Bryan Cutler, and Executive Director Jim Pinciotti.

When I was ten years old my Uncle Dustin was diagnosed with ALS.  He was 26.  He was always willing to play games and toss a baseball with me.  He was always happy and caring.  When he got sick, he lost function of his arm first and we couldn’t play baseball or toss a frisbee any more.  He passed away in May of 2010.

On April 22, 2013, my mom and I traveled to Harrisburg for The ALS Association’s Pennsylvania Advocacy Day.  My mom and I had the opportunity to talk with several senators and representatives.  We shared our story and and explained why we feel support for the ALS Association is so important.  Everyone we talked to was very compassionate and supportive.  They all made a point of asking me what my story was and why I was there.  I told them I was there because I miss my uncle everyday.  The experience of losing him has been very traumatizing for me and my family.  I want to do everything I can to help so that other families do not have to go through what we did.

Even though my Uncle Dustin is not with me anymore, he still impacts my life.  When he was alive, he set wonderful examples of how to live a life that touches other people.  He was an inspiration to me.  I want to help as many people who are struggling with this disease as possible. That is how my uncle inspired me to do good things and help others in theirtimes of need.

 

David is an example of how advocates of all ages can make a big difference in the fight against ALS. You can get involved as well by emailing Tony@alsphiladelphia.org today.

Our ALS Story
5/23/2013

Doctor Carl Vitola, a long time family physician in South Jersey, retired this month so that he could devote more time to caring for his wife, Eileen, who is living with ALS.

Dr. Vitola opened his office in Gloucester City and then moved it to Washington Township and has practiced medicine for 30 years. Now his priority is being there for his loving wife and their son Mario. Eileen is grateful for the support of her husband, and she has this to say:

I met Carl at Gloucester City High School when I was 16, Carl was 18. I fell in love with him immediately. He was kind beyond words and handsome. I admired him and his family.

Carl went to college and my family and I moved away, but I never forgot Carl.

A few years later we moved back to Gloucester City and Carl and I fell in love. Carl went off to medical school in Kansas City,Missouri. In January of Carl's freshmen year of medical school, Carl and I married.We moved to our first apartment in Kansas City in July and began our journey together as husband and wife. And what a wonderful journey it has been.



After graduating from medical school, Carl did his internship at Kennedy Memorial Hospital in Stratford,NJ. Upon completion of his internship,  Carl was  stationed in Patterson, NJ by the United States Public Health Service.

On a weekend home to visit with our families, we drove by 526 Monmouth Street, Marie Tedesco's property. It was for rent. Carl and I both loved Gloucester City and the friends, family and people of the city. We both agreed it would be a good spot to open a family practice office.

Needless to say Carl fell in love with everyone and so did I. I worked in the office until our son was born. I met so many cousins I did not know I had. We made so many friends and rekindled friendships from high school and Gloucester in general.

Carl loved and enjoyed practicing medicine every day. Carl's patients became his extended family. He enjoyed every encounter he had with everyone of his patients. Bonds were formed with his patients. They became friends, family. If you went to see Carl, you could tell him anything and everything and he would find a solution, and get you healed and better.

Carl saw the humanity in everyone. He understood, he had compassion, empathy, and was nonjudgmental.

When someone called Carl at home and I answered, they would apologize for calling. Carl and I never minded anyone calling our home when in need. Carl and I love people and understood that. We hoped if one or us or family needed assistance it would be available to us. We enjoyed people,we love everyone.

It is with sadness that Carl has decided to be at home to assist me with my ALS. However, isn't it just like Carl to do what he believes in? Here he goes again, putting himself second. I am so blessed to have Carl as my best friend and husband. Carl and I are blessed to have a son who is our best friend and a good son.
 


So ALS has not only robbed me of my independence, but it has affected my husband and my son's life, as well. And in turn it has affected Carl's patients,friends.

ALS not only devastates its victims, its impact has a rippling affect that goes on into infinity and impacts countless lives.

Because ALS is not as common as cancer and other high profile diseases, progress has been slow in finding a cause, treatments and a cure.

It is with sadness that Carl has chosen to be at home caring for me at this time. But that is who Carl is and why we all love him so much.

Thank you for your understanding, love, prayers, support, letters, cards, gifts and just being yourselves.

Carl loves you all, and so do Mario and I.

God Bless you and thank you for loving Carl and our family.
 
Click here to find out how you can get involved in the fight against ALS.

 

Walking
5/16/2013


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”

 

 

Why I Walk - Jim Fickes
5/15/2013

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 12th, 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.

 

Kayla visits Governor Markell
4/25/2013

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

Why We Walk - Jeanette Beck
4/17/2013

                      

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.

 

 

LeSean McCoy Fights ALS by the Yard
4/15/2013

 

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.

 

 

 

Learning to Fight
3/29/2013

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. "

 


     

A Message from Carol and Milt
3/29/2013

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
3/29/2013

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.

 

 

Why We Walk
3/27/2013

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 5th 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 5th.  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 2nd Highest Fundraising Team.  To see this kind of energy from people so deeply affected by ALS was quite moving.

Team Delaney Strong

 

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!

 


Spring 2013 Blogs

 

My Visit to Harrisburg

Eileen Vitola - Our ALS Story

Walking - A Poem

Why I Walk - Jim Fickes

Kayla Meets with Governor Markell

Why We Walk Jeanette Beck

LeSean McCoy Fights ALS by the Yard

Learning to Fight

A Message from Carol and Milt

Spring - A Poem by Don Farrell


 

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.