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Sophia's Story
11/22/2013

I am Sophia Phelan and I am 10 years old. I have a sister, Emma,  who is 8 years old and a brother, Zach, who is 3 years old. My Daddy, Thomas Phelan, has a disease called ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's Disease. ALS kills the motor neuron cells, so muscles do not get a signal from the brain telling them to move. However, the disease has no effect on the brain whatsoever.

ALS is an awful disease. Let me tell you why. Motor neuron cells control voluntary muscles. If the motor neurons die, the muscles don't get a signal from the brain, so then a person can't move. ALS is slowly paralyzing Daddy. A year ago, my Daddy was raking leaves with us and throwing us into a big leaf pile. Now my Daddy cannot even lift up his own arm. Pushing a button on the remote control is too hard for him. But the most frustrating part for my family is that we cannot understand Daddy when he talks. Tongue is a muscle, and it stopped working in my Daddy, so it is hard for him to talk and it is hard for me to understand him. Daddy needs a chair lift to get up the stairs. He needs a ramp to get to the front porch. He needs a wheelchair to go anywhere. Muscles are the things that work your lungs. You can breathe because of them. Daddy's lung muscles will one day stop working and he will die. Worst of all, there is no cure.

And so, at our school, Stuart Country Day School of the Sacred Heart, Emma and I organized a fundraiser for The ALS Association Greater Philadelphia Chapter. We wanted to raise money to fund research so scientists would be able to find a cure for this disease. I asked the school administration if we could do this fundraiser and they said yes. They also said we could have a dress down day for $1! The second and fifth grade got together in the mornings at the start of school when we had homeroom time. We made rainbow loom bracelets, duct tape bags, and so much other stuff! Every day at our snack period, Emma, Violet (Emma's friend), Emily (my friend), and I got together to price items, put up posters, make fliers (which went in everyone's Friday Folder), and do other stuff of the sort.

Finally, it was October 28, 2013 - the day of the fundraiser. Emma and I wore our ALS Express biker T-shirts and socks. Everybody showed up and they all brought about $10-$20! All the duct tape totes and wallets were gone the minute they hit the table. The hair clips were sold out pretty fast too. Everybody kept saying, "Keep the change" even if they were paying $10 extra! By the end of the day, we sold out of everything.

It is hard to believe this, but we raised $1,065.32!!! I couldn't believe it. Everyone was shocked. Not only did we raise money for ALS research, but we also raised awareness at Stuart about ALS. I hope that in the future, nobody will have to go through this and see a loved one get so sick. Nobody deserves to go through this. I hope that our money will make a difference. I want to defeat this awful disease, ALS, once and for all.

Sincerely,

Sophia Phelan

 

 

 

Proud to Serve
11/11/2013

By Dale Miller

I retired as a Colonel in the U.S. Marine Corps in 2005 after 30 years of combined active (10 years) and Reserve (20 years) service.  I was commissioned in Quantico, Virginia as a Second Lieutenant in 1975 after graduating from Platoon Leader’s class.  After finishing law school, I completed the six month Marine Corps Officer’s Basic School, and then was assigned to Camp Lejeune for about four years or so, after which I left active duty for the reserves.  As a Marine Reservist, I served in units in Washington D.C., Quantico, Virginia, Willow Grove, Pennsylvania, and Norfolk, Virginia.  After the terrorist attacks on 9/11, I returned to active duty and served tours in Kosovo, Germany, Turkey (Task Force North, Iraqi Freedom), Djibouti Africa, and Kenya.  Between deployments, I was stationed in Norfolk with Marine Corps Forces Atlantic.  I felt my first ALS symptoms in Djibouti in 2004 when I started stumbling with my right foot.  After many, many tests, I received my diagnosis in May, 2009.  I live with it every day, but I refuse to let it control my life.  I am proud to be a Marine, and have no regrets.  It was an honor to serve.    

Join Dale Miller and other veterans and their families at our Annual Luncheon on November 15th as we honor military service members with ALS. To learn more, visit www.alsphiladelphia.org/luncheon

 

 

A Toast to Dad
11/7/2013

By Carol Madden Lombardi

My dad is the most positive person I know. Watching how he approaches life with the many challenges of ALS has been an invaluable lesson to me and to everybody else around him. As he needs more and more help it really does give us all such peace and joy to take care of him and to be by his side, despite the constant struggles and sadness.

No person with ALS goes through this disease alone, especially as it progresses during the later stages. Being able to be a caregiver for my dad has been a blessing to me and my family, and the support we have received from The ALS Association to allow us to provide that care has been invaluable. You can put a price tag on a wheelchair, but you can’t put a price tag on time with your father.

Dad has always been a huge fan of French food and wine, so he was delighted when my husband Stéphane, or “The Frenchman” as he is now called, married into our family. We have traveled in Europe a few times with my parents, but the most fun we had was exploring small wine villages in France that my dad only knew from labels on the bottles back home. We’ve shared so many champagne toasts with him on our travels abroad and back home in Pennsylvania, and there is nobody we would rather raise our glass with in celebration and good cheer.

This summer, Stéphane and I flew in from France with our newest bundle of joy Remi, who was born in Lyon on July 16th. We brought Remi and his big sister, who is only two years old herself, into Philadelphia just in time for our family beach week at the end of August. All five siblings and our families were together with mom and dad in Sea Isle, New Jersey, enjoying the beautiful ocean views, time walking along the beach, and more than one toast of champagne.

Now when we go to our beach vacations, there is an elevator for dad. While it is now an unfortunate necessity as ALS keeps him in a wheelchair, it is also a reminder that despite this disease, we are still able to spend time together as a family.

Last year, dad spoke at the ALS Association Golf Outing. It was wonderful to see the love and support not just for him, but for all the people with ALS and their families. While we were all moved by his speech, I think dad would insist that his baby granddaughter stole the show when she pulled out the ticket for the raffle!

It meant a lot to us to see so many people supporting The ALS Association and it means even more to see how the Chapter supports my father. He was diagnosed in 2009 after limping with a drop foot and the symptoms progressed over the next few months where he needed a walker and then a scooter to get around from place to place. He still did everything that he could to stay healthy and fight back against the disease. As witnessed by his family support and the care from the Greater Philadelphia Chapter, dad will not have to fight alone.

Dad has lost more muscle strength since last year, losing more control of his arms and hands. Eating and breathing have both become more of a daily struggle. This year, he was forced to cancel his plans to teach, including private lessons from home, and this was a major disappointment for him. Our dad has been teaching music since he was in college, and even though he isn’t teaching at school anymore, his grandchildren still come to visit for lessons on drums and the french horn to supplement their music training at school. I know that the music from his grandchildren makes dad smile more than any song he has ever heard.

The ALS Association has helped so much these past few months and years. We now have a care giver who comes to the house eight hours a week, which helps both dad and mom. Now they have a hospital bed at home, which makes transfers easier and also helps when dad is coughing and having trouble breathing. When we have questions, the nurses and social workers at the Chapter are only a phone call away, happy to troubleshoot and provide solutions for our daily problems. They make the most stressful times much easier to handle.

This year, my parents celebrated their 45th wedding anniversary. That they can spend this time together means the world to us all. I hope that everybody can have a partner in life like my parents have in each other.

My husband and I are lucky to have this example in our lives. Now we want to give back to those who help make this life possible. Stéphane’s company Champagne Tendil et Lombardi is going to donate a portion of the sales from their new champagne to The ALS Association Greater Philadelphia so that more husbands can celebrate their anniversary and more grandparents can hear the music of their grandchildren. This new champagne will be available in Pennsylvania state stores in mid October. I hope you will pick up a bottle of Tendil et Lombardi Champagne when you go to the store and share a toast to my dad and to all families living with ALS.


Jim Madden lost his battle with ALS shortly after this story was written and shared. He was surrounded by his loving family as he drew his final breath.

Thor Johnson - Veteran with ALS
11/4/2013

Thor Johnson was born in Anaconda, Montana and graduated from the Montana College of Mineral Science and Technology in 1941. That year he was commissioned in the US Navy as an Ensign and was sent to Carnegie-Mellon University in Pittsburgh, where he earned a master’s degree in metallurgical engineering. In 1946, he was sent to the Bikini atoll where the United States was conducting atomic bomb tests. During this assignment he evaluated the effects of the bomb on the structure of various metals.  After several months there he was reassigned to the Naval Research Laboratory in Washington DC.


As a lieutenant commander during the Korean War, he served on the Kermit Roosevelt, a repair ship stationed in Sasebo, Japan, where he was in charge of repairs of military ships. After the war, he served at several naval bases across the United States and was subsequently assigned to Planning at the Navy Department in Washington DC. While there he was promoted to the rank of full commander. From 1959 until he retired in 1962 he was the Superintendent of Engineering at the Philadelphia Naval Shipyard. After retiring, Cmdr. Johnson worked for Lukens Steel in Coatesville and later for Combustion Engineering in King of Prussia.


Thor Johnson was diagnosed with ALS in the Spring of 1990 and died in the Fall of 1992. His military career contributed greatly to the courage and discipline with which he confronted this disease. The ALS Association Greater Philadelphia Chapter gave him the strength and perception to confront ALS and he put that strength into these words:
                                                                        “LIFE IS A GAME IN A WAY
                                                                         YOU WIN, LOSE, OR TIE
                                                                         I KNOW I CAN NOT WIN;
                                                                         I KNOW I COULD GIVE UP AND LOSE;
                                                                         I AM GOING FOR THE TIE!”

Thor was married for 50 years to his wife Sarah Louise and they had three children David, Eric and Janelle and three grandchildren. His interest and activities included his church, professional engineering organizations, barbershop singing and traveling. He also had a love of sports, especially baseball. As a young man he was an accomplished  baseball player and herein lays quite the “irony”. His favorite baseball player was Lou Gehrig! Little did he know as a youth how his life would ultimately be entwined in the same disease that took his childhood hero’s life!

In 2010 his family was proud to establish the Thor W. Johnson Memorial Fund to provide general support of the Philadelphia Chapter’s mission.

You can help honor military service members like Thor Johnson at our Annual Luncheon on Friday, November 15th at Loews Philadelphia Hotel. Go to www.alsphiladelphia.org/luncheon to learn more


                                       

Assistive Technology for Caregivers
11/4/2013

By Alisa Brownlee

Many caregivers can benefit from the advances in assistive technology.  It can make your life as a caregiver easier and less stressful both physically and mentally. Below are the types of assistive technology that can assist caregivers of people with ALS.

Personal Care:

  • Adaptive clothing is designed for people who have difficulty dressing because of a disease or physical disability.  Pants feature cut backs, which makes using a toilet easier and shirts often offer Velcro in the front for easier dressing.  Many web-based companies sell a variety of clothing options for people with disabilities.
  • Shampoo basins or trays that enable caregivers to wash someone’s hair either in bed or from a wheelchair
  • Shower/bath devices like grab bars, transfer boards or bath/shower chairs
  • Sliding Bath System
    • Used by simply rolling the bather into position next to the tub, interlocking to the tub frame, releasing the shuttle seat from the rolling chassis, and sliding the transfer over the tub.  After the bather is positioned over the tub, the caregiver can remove the rolling chassis for unobstructed access to the bather.  No permanent installation is required.
  • Portable Showers. This can be vital if the bathroom is on a different floor, and the person with ALS is not able to get to bathroom. Portable showers can be attached to any faucet, have waterproof sides, allow enough room for a wheelchair to roll in, and have a pump to allow water to flow out and into a sink.
  • Bidets offer people independence in the bathroom.  Bidets can be added to any existing commode and can even be used if the person does not have hand function, as many can be switch operated.

Alert and Safety Systems:

  • Personal pagers or alarms that notify caregivers when a person with ALS needs attention.  These devices allow the caregivers to be in other parts of the house or outside and receive an alert.
  • Emergency alert devices. These generally have two parts: a base unit, which connects to a land line or a cell phone, and a bracelet, pendant or switch with an alarm button for your loved one. These typically require a monthly subscription. In an emergency, pressing the button alerts the company’s operator, who then notifies local authorities. Some devices can also contact an operator if they detect that the person has fallen. Emergency alert devices are for home use only.  For more information, visit www.webmd.com. 
  • There are computer software or apps designed to provide the means for a caregiver to remotely monitor a PALS at home.  This is especially useful if the caregiver works and wants to check on their loved one throughout the day.

Home: 

  • Home Automation systems can allow the PALS to remotely open a door, adjust thermostats, turn on TV, DVD, radio, etc.  These systems can be used even if the person with ALS does not have hand function.
  • Portable ramps for thresholds or stairs.  Portable ramps can be removed when the user is finished with them.

 



Why We Walk - Legs 4 Greg
10/30/2013

The Legs 4 Greg team has been doing the Greater Philadelphia Walk to Defeat ALS since 2007. This year however, Greg Telthorster told his friend and stretcher Patti that he felt that he couldn't make it to Citizens Bank Park this year.

Patti's response: "Well let's bring the walk to you!"

That is how this year's Covered Bridge Lane Walk was born. Greg's wife Marcia asked their neighbors in Doylestown about parking and four houses offered to host "bases" so that their walk could mirror the course at Citizens Bank Park. They are even planning to offer ball park style food like Philly  pretzels, popcorn, and more.

Every Walk to Defeat ALS has music, so Greg's brother in law Charlie is coming with his band to warm up the walkers and their next door neighbors, the Jano's, are hosting "Ashburn Alley" with a fire pit, games, and tail gating style activities for after the walk.

This unique and personal walk event came together very quickly, and the Telthorster family is expecting anywhere from 150 to 200 people to join them on November 9th, the Saturday after the Greater Philadelphia Walk to Defeat ALS. They even have family driving in from Pittsburgh and Silver Spring, Maryland.

Initially Greg was disappointed that he would not make it to the walk at Citizens Bank Park. The Walk to Defeat ALS has been important to the whole family for years. They have raised over $121,000 since 2007! What started out as a disappointment has turned into Greg really feeling the love of his family and friends rallying together for him and the cause.


"Because Greg and I have benefitted so much from the patient services from the Greater Philadelphia Chapter, it is really heartwarming that we are able to share in giving back," said Marcia.

The Walk to Defeat ALS doesn't succeed because of where it is held or the color of the shirts. It succeeds because of the people rallying together for the family and friends with ALS that they love so much. Greg and Marcia are excited to have so many people in their lives who want to rally support. For their friends and family, it doesn't matter where they have to go, they will always be there for Greg and they will continue to do what they can to put an end to ALS for good.


Even if you can't make it to Citizens Bank Park, you can still support the Walk to Defeat ALS. Click here to find out how!

 

Why We Walk - Steve and Charlotte Potter
10/28/2013

By Steve Potter

2013 will mark the sixth time that the Steps for Steve team has walked in the Greater Philadelphia Walk to Defeat ALS. We are very fortunate to have some very generous friends and family to support us each year.

We start our fundraising for the Walk early by setting up our team online and putting in money ourselves. Then we we use email and Facebook to get the word out to all of our friends and family. We also get corporate matching for up to $1,000 by Charlotte's company. A few weeks before the walk, we send out reminders again by email and Facebook to make sure that everybody is on board.


When walk day finally comes, we make it fun for everybody. Our teams always has a good time at the walk itself and we make sure to invite everybody on our team to come back to our house for a party to celebrate.

My favorite thing about the walk is the fact that there are thousands of people there who have been affected by ALS. As a person living with ALS, I truly appreciate the love from everybody who supports us. There are thousands of walkers from hundreds of teams and they are all there because they care. I think that is pretty special.

Thank you to everybody at the Greater Philadelphia Chapter and all of the volunteers that make the walks a success.


Please join us on Sunday, November 3rd at the Greater Philadelphia Walk to Defeat ALS. I hope to see you there!

 

Why We Walk - Craig and Kristen Colby
10/18/2013

By Kristen Colby

Our ALS story doesn’t start much differently from so many others. Craig’s road to diagnosis took 14 long months and then on October 1, 2008, we were told the devastating news that he had ALS at just 33 years old. We were scared and confused. Our first question was “How does this happen to a healthy 33 year old man?!”

Then more questions came. What would we do next? How was I going to protect Craig? How were we going to learn how to adapt?

The answers we would get came from Craig’s intuition and the help and support from The ALS Association Greater Philadelphia Chapter. Life has been a daily learning experience ever since. Craig has gone from working 80 hours a week to now counting on me for everything, including simple tasks that we used to take for granted.

Last year, Craig has to have a tracheotomy performed and life has changed even more, but we have learned to adapt and make it all work. Life is hard, but it is also sweet because we have amazing friends and family, the support of everyone at the ALS Association, and, most importantly, we have each other. We decided on that fateful day in 2008 that we were going to fight ALS together.

Our first Walk to Defeat ALS® was just a few weeks later and we had the most amazing outcome! We simply told everybody the truth, that Craig’s life was forever changed and that we needed their help. From then on, most everybody has stepped up to help, whether to do a quick errand, watch the dog, or support us and be at our side through the Walk to Defeat ALS®. Along the way, some people have been scared and confused to see what has happened to Craig. We have learned that some people walk out of your life, but even more wonderful people have come into our lives. With the help of wonderful friends and family, we were able to raise a lot of money and have over 40 people on our walk team! Through email, word of mouth, and Facebook, we have been able to raise thousands of dollars over the last five years.

These last five years have been amazingly hard, but nonetheless AMAZING. We have learned how truly strong we are and we have learned to enjoy every moment together. We came to that first Walk to Defeat ALS® and we were blown away! We know that we were with family and that every one of the walkers at that first walk were there for each other and to support those with ALS.  We have been part of that family ever since and we are so incredibly grateful and thankful for everybody that has come into our lives.



We have gone through some hard times since 2008, including our house burning down just months after Craig’s diagnosis, but we have pushed through it all and learned from every adversity we have faced. I hope our story can help others and we are more than happy to be an ear for anyone who needs help or just a place to vent. Thank you to everybody who has been by our side and to the ALS Association for all they have done for us along the way.

Please join us on Sunday, November 3rd at Citizens Bank Park for the Greater Philadelphia Walk to Defeat ALS®. We hope to see you there.

 

 

From Puerto Rico with Love
10/10/2013

The Walk to Defeat ALS® brings together people from many places and cultures. People come to our walks from all over the country, and sometimes even further. This year, a very special new team, Team Gloria, will unite family members from Pennsylvania and Puerto Rico as they raise money and awareness for a cure.

Family is very important to Fernando Jové and his wife Samantha. So when his mother Gloria was diagnosed with ALS in 2012, it hit everybody hard. Even though Gloria lived back in Puerto Rico, Fernando’s daughters knew her very well, and their oldest daughter, Lydia, was fortunate enough to spend a few weeks alone with her “abuela” last year. It is impossible to put a price tag on that time spent together.

Gloria passed away this past February, just months after she received her diagnosis. Lydia went down to Puerto Rico with her father for the funeral. As Samantha noted, Gloria was probably living with ALS for a few years before the doctors were able to definitively tell her what it was. Unfortunately, part of the reason that doctors were able to make the conclusion was that Gloria’s brother was diagnosed with ALS the year before, leading them now to say that they have a familial form of the disease.

Now Fernando knows that he has a 50% chance of developing ALS in his lifetime. His wife, daughters, brothers and his father are determined to do what they can to find a cure before that ever happens.

Fernando has a strong bond to his parents, an example of love that he and his wife hope to pass on to their own children. Six days before Gloria passed, Fernando went to visit, taking her out to old San Juan and sharing a peaceful day together. He will always be able to hold onto that memory and know he was by her side when he was most needed.

Those memories will not be all that the Jové family will have able to remember Gloria. While Fernando and his siblings were growing up, Gloria loved to cook for them. Holidays and special occasions with the family were filled with the smells of authentic Puerto Rican meals. Now Samantha is trying to cook Gloria’s recipes every week.

“Gloria taught me a lot about cooking,” said Samantha. “She was a fantastic cook and always made a lot of traditional meals like pernil, rice and beans, and flan. We will always be able to hold her in our hearts through the smells and tastes that come through our kitchen.”

Samantha isn’t the only one recreating Gloria’s cooking. Fernando’s father, also named Fernando, is trying hard to perfect all of her recipes. They just had a video chat with Fernando’s father last week and he was trying to make a cake that Gloria used to bake, but he wouldn’t let anybody taste it until it was just right. In addition to all of the ingredients he put into the dessert, he added a big portion of love for his wife.

In an unexpected, but welcome surprise for the family, they won’t just have to talk to Fernando’s father through Skype on the computer. He is making the trip from Puerto Rico to be with the family at the Greater Philadelphia Walk to Defeat ALS®. The whole family only gets together every few years, so this is an opportunity to reunite and share a special moment with a common cause.

Despite the fact that Samantha knew very little about ALS before Gloria was diagnosed, this is not the first she has heard about the Walk to Defeat ALS®. One of her friends has had a team in the walk for a few years with the team Boltz’s Bunch and Samantha remembered well how important the walk was to them. When Gloria passed, she already knew that the Walk to Defeat ALS® was one way they would fight back against the disease that took her.

Pictured: Gloria (center), with husband Fernando in the back. On right, Fernando with his wife Samantha with their daughters Lydia and Isla. On left, Fernando's brother Alberto with his wife Raymar and thier son Alberto.

As the Jové family rallies to raise money and awareness in this year’s walk, they will be able to find comfort in the food and stories that evoke the best memories of Gloria. Samantha and Fernando might never be able to truly perfect the recipes that Gloria made back in Puerto Rico, but every effort to try gives them one more reason to smile about the person who meant so much to them all. Because of that, even though ALS may have taken her life, Gloria’s spirit will always be there to keep the whole family strong for generations to come.

 

Sang Bok Graham Named Fund
10/2/2013

“…As Long As I Am Able, or Until ALS is No Longer!”


Deb Graham is always looking for ways to support families with ALS. As a result of her work as a Community Ambassador, Visiting Volunteer, and Walk to Defeat ALS® Team Captain, Deb was recently named Volunteer of the Month.


Yet, Deb wanted to do more.


After looking at how she could make an even bigger impact in the fight against ALS, Deb talked with the Chapter’s Chief Development Officer, Jeff Cline, about starting a Named Fund. Why does Deb do so much for the cause? It is because she saw first-hand the devastating effects of ALS on her mother, Sang Bok Graham. While many Named Funds go to specific programs, Deb has established The Sang Bok Graham Memorial Fund to support the Chapter’s overall mission because she saw how every aspect of the Greater Philadelphia Chapter was important to her mother and to her whole family as they struggled with ALS.


Deb knows that no single thing is enough to fight ALS. That is why she takes on such a wide variety of roles with the Chapter and is not afraid to ask others to get involved, even if just for an hour or to donate just five dollars. Every little thing makes an important difference. Now Deb wants to make sure that her mother can continue to have a positive impact on the world, nearly a decade after she lost her battle to Lou Gehrig’s Disease.

While Sang Bok Graham’s life may have been cut short by ALS, she lives on through the example she passed onto her daughter and family, and now through the Fund bearing her name. Deb takes great pride and satisfaction in knowing that her mother will be forever known as a person whose fight to defeat ALS continued on for the thousands stricken with it every year.


 “I will fight ALS as long as it takes, as long as I am able, or until ALS is no longer” is Deb Graham’s motto. This Named Fund in loving memory of her mother will help fulfill that promise.


Deb established her mother’s Fund by naming the ALS Association Greater Philadelphia Chapter as the beneficiary of an annuity, which means that she can contribute a substantial amount to the cause with no out-of-pocket cost. Knowing that most people need their incomes to support current and future living expenses, Deb encourages other families to explore making similar “designation gifts” with life insurance policies and retirement plans to support the Chapter’s work.


To learn more about the many ways you can create a Named Fund, email Jeff Cline at Jeff@alsphiladelphia.org

Why We Walk - Steve Paul
9/25/2013

Steve Paul has always been the kind of person who makes a positive impact on others. ALS is a disease that leaves a profound impact on people who come in contact with someone who has been diagnosed. Put it together, and Steve Paul has made a big impression since he was diagnosed with ALS just a few months ago.

He wants his biggest impact to be finding a cure for all people with ALS.

Before being diagnosed with Lou Gehrig’s Disease, Steve’s life was a mix of joys and challenges. He worked two jobs, gardened, loved fishing, and did a lot of fix-it projects around the house and neighborhood. He grew up working in his grandfather’s slaughterhouse and then with his parents in their restaurant. Every job was a learning experience.

After those working lessons, Steve went into healthcare, working as a hospital attendant, clerk, supervisor, hospital assistant administrator, and New Jersey Department of Health Hospital Regulator, all before the age of 35. Then, after all that, Steve Paul went to medical school.

Steve practiced podiatry in the Allentown area for several years until a fateful storm in 1994. People in the Lehigh Valley still remember the snowstorms from that winter. Highways were shut down and many were stuck inside their homes for days. Steve’s podiatry practice was built on 40% house calls. Many people were leery of letting somebody in their home without calling them first and, back then, cell phones were not nearly as common as they are now.

While making his way to another house call, Steve stopped to use a pay phone to call the patient. The storm had made conditions very bad, and as he stepped out of the phone booth, Steve slipped and fell hard enough to put an indentation in the ice that covered the sidewalk. As painful as the impact was, he did not realize how badly he had hurt himself. That was New Year’s Day 1994. By February, he was shaking and was losing focus in his eyes. He went to the doctor and found out that there he had a blood clot along 60% of the left side of his brain. It left him with double vision and a shaking right hand. Even more importantly, it meant that Steve could not practice medicine anymore.

From then on, Steve was forced to give up podiatry and began working on insurance and billing. He was in good shape until about six years later danger struck again in the form of a severe car accident. When he woke up, he couldn’t speak or swallow or walk and began two years of difficult rehabilitation. Still, Steve persevered.

Steve now has a new reason to persevere after being diagnosed with Lou Gehrig’s Disease in June 2013. After his past setbacks, Steve was determined to get back to work. This time, things became even more challenging. In July, Steve was too unsteady to walk and write and he had to leave his job processing insurance.

Still, even with these setbacks, Steve’s personality and charm continue to put smiles on the faces of those around him. He is a huge Philadelphia sports fan, and while staying at a nursing home this past summer and sharing a room, he would have the Phillies game on while his roommate had the Eagles preseason game on his TV so that they could see every moment of Philly sports without missing a beat. Recently, Steve had more reason to smile as he wrote an essay for which he won a contest to receive a funeral package from Reichel Funeral Home on behalf of the IronPigs minor league baseball team. He attended the game wearing his Roy Halladay Phillies jersey and shared the moment with his daughter Robyn, who has stepped up to help him in every way she can.

Now, due to the impact that Steve has made on so many in his life, people are coming together to support his team in the Lehigh Valley Walk to Defeat ALS® on Saturday, October 19th back at the same place he won his contest – Coca Cola Park in Allentown, PA. Caregivers from ManorCare are rallying to his side, a group from Olympus Medical Equipment is securing matching funds for the walk, and people are supporting him from Pennsylvania, Connecticut, Massachusetts and New Jersey. His wife has also helped, despite her own health issues, and Steve was happy to celebrate their 40th wedding anniversary this summer.

Before he was diagnosed, Steve said he didn’t know anyone with ALS. Since then, he’s met nearly two dozen people who are living with ALS and he says he is learning a lot from them. He’s also learning a lot from the social workers and caregivers at the ALS Association Clinic at Lehigh Valley Medical Center, particularly Wendy Barnes, a social worker with the Chapter, who Steve counts on to respond to a call or text about an urgent need.

Steve also told the Chapter that he is happy to count on running back LeSean McCoy as an ally in the fight against ALS. “Every time I get an email about LeSean’s Fight ALS by the Yard program, I forward it to all of my friends,” said Steve with excitement. (Visit http://www.alsphiladelphia.org/fightalsbytheyard to join LeSean's team to fight ALS all season long.) From the Phillies to the IronPigs to LeSean, Steve knows that Philly sports are a good source of support. That’s because, just like the group that’s coming together to Walk to Defeat ALS® and the group of nurses who gave him the care he needed, Steve knows it takes a team to beat ALS.


“What gives me strength?” said Steve. “All of the people who go out of their way to help. Even as ALS makes my body weaker, they help keep me strong.”

Service Comes Full Circle
9/24/2013

Lou Choppy was a no fuss, no mess kind of guy. That was true during his time in the U.S. Army all the way until he passed away from ALS in 2010.


Like so many other military veterans, Lou did not define himself by the time he spent in the service. He and his wife Marian lived in Albany, New York for nearly his whole life. They spent their days walking and cooking healthy food from their local CSA farm. Lou came from a very large Italian family and he and his wife were delighted by the opportunity to open their home to his siblings, his cousins, and, of course, his grandchildren.


Lou’s healthy life was not just because of his diet and exercise. He was healthy spiritually as he and his wife were Eucharistic ministers at their church, and he was healthy socially as they had many friends in their ever expanding circle. Lou was also healthy intellectually as a voracious reader, especially of non-fiction. He wanted to know and experience all he could about the world around him. Unsurprisingly, Lou was valedictorian both in high school and in his first college, going on to get his Bachelors and then two Masters Degrees.


It was Lou’s intellect that would get him out of scrubbing toilets and cleaning the mess halls and into office work while in the Army. Those years of service gave him strength and experience and a solid starting point in life.


Yet for all of the knowledge that Lou accumulated in his life, he didn’t know anybody with ALS when he received his diagnosis in April of 2010. The only person he or Marian had ever heard of with the disease was Lou Gehrig himself. Even with such a large family and network of close friends, he had never encountered ALS in his entire life.


Upon being diagnosed, Lou and Marian had a lot to learn, not just about ALS as a disease, but also about the services available to them and the support for veterans. They learned that ALS is considered a service connected disease, with military veterans being diagnosed at twice the rate of the general population.


Just as importantly, they learned that there were a lot of people who cared and who would be there to help.
When Lou attended the ALS Association Certified Clinic at Pennsylvania Hospital in Philadelphia, the social worker told Marian to fill out forms for help from the Veterans Administration (VA) The advice of the social worker was invaluable, guiding the couple along to the services they would need and connecting them with people who helped veterans every day.


“Lou lived just six months after being diagnosed with ALS, but as a veteran, he received monetary support for a few of those months to allow me to pay for four aides a day to lift, transfer, and do basic custodial duties,” his wife Marian recounted. “It also allowed me to keep Lou at home in dignity.”


“After Lou’s passing, the VA gave me a monthly stipend and offered me educational assistance if I needed it. It is good to know there were others out there who care.”


Lou passed away one day after celebrating his 80th birthday. It was obviously a milestone that mattered a lot to him. Taking care of Marian also meant a lot. Even on his last day, he had his loving wife foremost in his heart, dying peacefully in her arms. She was able to have those final moments with him in the comfort of their own home, with the love and dignity they both wanted, because of the help afforded to veterans and the personal advocacy of social workers who knew about the benefits he deserved.


Marian wants others to know about the support offered through the PVA and she wants all people with ALS and their loved ones to know that there is comfort and care available. She hopes that other veterans like Lou will get to spend their time arm in arm with those they love.

To learn more about Veterans Benefits, contact Jeff@alsphiladelphia.org

Walk Miles with a Smile
9/12/2013

By Tony Heyl

The people who come to our Chapter are more than just numbers to be counted. Each person with ALS, along with their family and friends, leaves an impact on the staff, board and volunteers at our Chapter. One individual who continues to leave a big impression on us all is Milt Sierra, whom I first met in 2012.


Milt lives in Delanco, New Jersey, and was diagnosed with ALS in 2011. When I first visited his house last fall, Milt was walking, albeit with difficulty. This week I met him again to discuss the Walk to Defeat ALS® and he was now in a power wheelchair. While his body has changed, his incredible positive outlook on life is still very much the same.


Before being diagnosed with ALS, Milt was healthy and active. As he put it, “there was no stopping me!” In addition to his regular work, Milt would help people in his senior development with their landscaping and other issues that might arise in their homes. Many times, people rally around somebody after they are diagnosed with ALS, but in Milt’s case, his neighbors were already big supporters of his because of how he helped them in their times of need. His friends Jerry, Marie, Jim, Carolyn, Earl and others all walk to his place on a regular basis to check in and see how Milt and his wife Edie are doing.


There is a warm community that surrounds Milt. As one of 11 siblings, Milt knows the benefit of having others by his side. Two of his sisters, Lacey and Millie, work as caregivers in healthcare, and the whole family, who live in all corners of the country, are rallying behind their brother.


Milt said that immediately after his diagnosis, he became depressed and had bad thoughts, including suicide. Then he was introduced to the local support group for people with ALS in his area run by Jen Klapper from the Greater Philadelphia Chapter. The support group had many people there at many stages of ALS. Of the seven people who were there when Milt first joined the group, four have passed away, but Jen and her group made Milt realize that he could do more than simply cope with ALS.


Now Milt’s mission is to help others with ALS and to find new ways to communicate to caregivers exactly what a person with ALS goes through daily. That is why Milt has been a strong advocate, meeting with his Assemblyman Troy Singleton to gain support with people with ALS in New Jersey. This positive mission is also why Milt has organized a team for the Greater Philadelphia Walk to Defeat ALS® on November 3rd at Citizens Bank Park. So far, Milt, with the help of his wife, his sisters and his neighbors, has over 60 people joining him on his team with a goal of raising $5,000. They are selling shirts and putting fliers up throughout the neighborhood to spread awareness and get more people involved.


Milt’s neighbors know how important community is to him. They miss seeing him doing yard work and now they have to learn how to do things they took for granted, like turning on the sprinkler system and fixing the icemaker. They are a constant reminder to Milt that he is always in their thoughts and prayers.


Milt wants everyone to know and understand the challenges people with ALS and their spouses and loved ones face. He appreciates all that his wife does for him on a daily basis. After years of helping others, they are now giving back by helping him as his disease progresses, yet he still wants to shine light on others first.


When I first met Milt last year, he made me a walking stick. Making walking sticks in his home workshop was a hobby of his. It is a symbol of how, with his attitude in life, Milt is helping others stay strong, even as ALS makes his body weak. Dave, his friend in the ALS support group, would say “Stay strong and ride on.” Dave has ridden on, and Milt is determined to stay strong, not just for himself, but for everybody who needs some extra strength in their lives.


Look for Milt and his team at Citizens Bank Park on November 3rd. They’ll be the ones walking miles with a smile to defeat ALS.

Fast Eddie's Walkers
9/6/2013

By Brian Kennedy

On July 9, 2012 our father, Ed Kennedy, was diagnosed with ALS.  As you can imagine, all of our lives changed drastically on that hot summer day. Since then, like so many others, our family has experienced ups and downs, trials and tribulations and in many ways we have all felt like we were on a nonstop roller coaster. However, we have been equally blessed on many fronts, especially with an outpouring of love and support from friends and family. We have also grown to appreciate what others may see as the "smaller" things in life. While our father's daily activities are now limited, we continue to learn from him as he faces new challenges each and every day and we continue to be inspired by his deep Catholic faith. His giant Irish smile fills us with encouragement, gratitude and hope. Honored to be one of his 9 children, we each are proud to stand by our dad as he continues to fight this battle.

Our father is the most beautiful person we know inside and out and he always smiles and makes everyone else around him smile. He has had such an amazing impact on all of our lives and anyone who has known him has been blessed. We realize that one day all we will have left is to cherish those memories we made together and help perpetuate the many values, faith and love that we shared. He continues to lead by example through his willingness to put others before himself with his daily acts of kindness, strong conviction and hours of concentrated prayerfulness.  He clearly has taught us all something about perseverance, determination and what it means to have faith. We will need all three of these qualities as we tackle all that lies ahead of us. 

While dad normally embraces each day and every challenge with his cheerful smile, we know this has been a long, trying year for him. He is now dependent on other people and on new technology to assist him with basic living. Despite the challenges that ALS has brought to his life, he has managed to keep turning lemons into lemonade.

With a family as big as ours, we know firsthand that when we all work together great things will happen. So, we reached out to our family, friends, relatives and coworkers and so on for support and that each of them please join our family and our team “Fast Eddies Walkers" in Ocean City, New Jersey on September 21, 2013 as we walk to not only help defeat ALS, but also to show support for a man who has worked extraordinarily hard his entire life and who continues to make daily sacrifices for his family, friends, and loved ones. With your support, together we will help make a difference in the lives of people touched by this devastating disease.  As a family, we do believe that God gives us what we can handle. We are proud to have the opportunity and especially the ability to walk in support of this man whom we happen to think is pretty special. We currently have over 100 people that have joined our team and plan to walk with us.  Our group has exceeded our initial goal of $10,000 and we are on our way to hitting $15,000 soon.  We plan on continuing to push for better results. Every donation makes a difference.

This disease robs you of your physical abilities, but it leaves your mind and spirit strong, almost making being alive to appear different.  I imagine it becomes all about your emotional connections to those you love. We watch as our father smiles when he sees his grandchildren, his eyes light up when you walk in the door, he relaxes when the sun shines on his face. His body may be slowing down and stopping him from fighting this disease but his spirit is thriving. By walking in his honor we are fighting the fight for him.

These days our family is  hanging together as much as possible as we realize that we are stronger as a group than as individuals. We hope by sharing our families’ experience, as well as that of others, we can learn more together about striking out ALS, for our dad and for all the other "Fast Eddies" out there.

I know I speak for my 8 siblings when I say we won't stop until we have done everything we can to give our father everything he needs - to know that we were a part of something that could not only save him, but save thousands more. We won't stop until there is a cure. We can all only hope it's discovered soon.

On behalf of the entire Kennedy family, we cannot thank the ALS Association enough for all of their efforts and dedication.  It is truly comforting to have this group educating and advising us as we navigate through these new realizations. We appreciate their compassion, dedication, and expertise in this area, and in the health support of our father.  Our father will never be alone in this battle.

When you come to a Walk to Defeat ALS, you'll see that you aren't alone either.


Please join us on September 21 in Ocean City, New Jersey. If you can't make it then, we encourage you to join a Walk to Defeat ALS near you.

The Kennedy Kids



Eddie, Kathleen, Maureen, Marianne, Denise, Michael, Patty, Terry & Brian











Fall 2013 Blogs

 

Sophia's Story

Proud to Serve

A Toast to Dad

Thor Johnson - Veteran with ALS

Assistive Technology for Caregivers

Why We Walk - Legs 4 Greg

Why We Walk - Steven and Charlotte Potter

Why We Walk - Craig and Kristen Colby

Why We Walk - From Puerto Rico with Love

Sang Bok Graham Named Fund

Why We Walk - Steve Paul

Service Comes Full Circle

Walk Miles with a Smile

Fast Eddie's Walkers


 
 

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.