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Finding a Cure Together
Wednesday, November 28, 2012

 

By Don Smay

Don SmayWe recently attended a consortium with North East ALS Association (NEALS). Doctors, researchers and clinicians from the Mid-Atlantic and North East regions of the United States convened for a weeklong meeting. Ten ALS patients and their caregivers, including myself and my wife, were invited to attend the final weekend to learn about the roadblocks of clinical trials. We came away from this session with a deeper appreciation of how important it is to stay involved in the ALS community through the multidisciplinary clinics and also to participate in clinical trials when available and/or qualified.

The weekend sessions focused on the difficulties in getting trials off the ground. We learned that the greatest stumbling block for ALS research is the fact that less than 10% of patients get involved in clinical trials. Research technicians and clinics throughout the United States, in partnership with many pharmaceutical companies, are developing therapies and pharmaceuticals to try to combat ALS and possibly find a cure. Without the participation of patients and caregivers, we will be limited in the number of therapies that can be developed. There are many reasons why patients and caregivers may be reluctant to get involved in clinical trials. The fact is most of these concerns are based on misunderstanding or fear. I must note however, that certain clinical trials are actually filled up quickly and this is primarily because of their location or nature of treatment. 

I have personally been involved in clinical trials. Patients have a few common objections regarding why they do not want to get involved in clinical trials. One reason could be financial. In some cases patients would have to travel a great distance to get to a trial site in order to participate. This can be a valid concern, especially for those living in rural regions of United States. For those patients I would suggest that you speak to your doctors to find out if there are trials that are closer to where you live. Since there are so many trials going on at one time it is possible that a different, but just as vital, clinical trial may be closer than you think. Another common reason cited is that "I don't want to be a guinea pig". This could be a hard fear to overcome since there are so many media sources reporting unethical behavior. When a person is first diagnosed with ALS we are warned to be aware of people coming out of the woodwork to tell us of a new treatment. Many well intentioned people including friends and family will do research and find alternative treatments for ALS. Often patients will travel great distances and spend a great deal of money to go through a treatment process that has never been proven or even researched for efficacy. For some reason people don't seem to fear trying alternative medicines where they are likely to be a "guinea pig" but do fear working within the medical community that has done decades of research exclusively with ALS. One other fear among the many is that the patient does not want to be the participant that receives a placebo. Though it is true that some will receive a placebo, it is necessary to maintain the integrity of the study. Without people participating in the studies, trials cannot go forward. The Smay family at the Hershey Walk to Defeat ALS

The doctors and researchers whom we met during this event are so passionate and dedicated to their work in finding therapies and ultimately a cure for ALS. My hope is that many more patients and caregivers have the opportunity to get involved in an event like the NEALS Consortium so they can see firsthand how they can be effective in helping to find a cure for ALS. I would encourage patients and caregivers to speak to their ALS doctors to learn more about clinical trials for which they may be qualified.

Together we can find a cure.

 

Learn more about advances in ALS research by clicking here.

You can support ALS research directly by donating today to the Ellyn Fund

Join Don and thousands of patients, families, caregivers and supporters at a Walk to Defeat ALS near you.

 

 

Giving to the Next Generation
Tuesday, November 27, 2012

The people we meet at The ALS Association Greater Philadelphia Chapter do a lot of raising in their lives. That includes raising awareness, raising money, and also raising families. For Marilyn Condrack, she has had experience doing all three long before she was diagnosed with Lou Gehrig’s Disease.

Marilyn has lived in Pottsville, Pennsylvania most of her life, but has been a Phillies fan even longer. She’s instilled that excitement for the team to her children and grandchildren. This year, she was able to bring her daughter Lynn and grandson Nate to the Phillies Phestival. To say they had a good time would be an understatement.

“I had the best day ever!” said Nathan “I got to go to the Phillies Phestival with my Nan, who has ALS, and my mom.  It was so awesome to meet by idols – Roy Halladay, Cole Hamels, Ryan Howard, Jonathon Papelbon, Michael Schwimmer & Eric Kratz.  They were so nice to us.  They signed stuff, talked to us, and took lots of pictures with us.  I know my Nan really liked doing this with me because she knows how much I love the Phillies.  The ALS Association and the Phillies ROCK!!”

Nathan’s enthusiasm has helped inspire the Chapter to create a Kidsletter, by kids and for kids who are touched by Lou Gehrig’s Disease.

It’s no surprise that Marilyn and her family appreciate all that the Phillies do for others because Marilyn herself has worked to bring the same kind of joy to children for years. In her last job before she retired in 2003, Marilyn owned a small business as a fundraiser distributor. She sold bulk candy to children so that they could raise money for school trips.

Her business was also a supplier for Santa workshops. Kids could come to the small workshops and buy Christmas presents for their families for just a few dollars so that they could experience the joy of giving gifts to others during the holidays.  What made Marilyn most satisfied with her work was that she wasn’t just providing young people gifts or fundraising tools, but she was giving them a spirit of generosity, which is even more meaningful as we move past Black Friday to Giving Tuesday.

That spirit has been with Marilyn her whole life. She was married to her husband Frances in 1966, though everybody calls him Butch, which Marilyn herself will tell you is a pretty popular nickname around Pottsville. Her son Paul and daughter Lynn were born just a few years later. She now has two grandsons and two granddaughters, who she loves to see whenever she has a chance

Marilyn retired from her job in 2003 after it became too difficult physically and was diagnosed with ALS in October 2011. Originally, she went to the ALS Association Clinic at Hershey Medical Center where she said she received wonderful care. However, when she saw that there was a clinic in the Lehigh Valley, she asked if it was ok for her to go there instead to be nearer to family. Dr. Simmons told her simply, “If it is better for you, that is all that matters.”

Now Marilyn gets to spend time with her grandchildren every time she attends the ALS Association Clinic at the Lehigh Valley Health Network, as well as every time she participates in a Walk to Defeat ALS. While the nurses and doctors give her the care she needs, she gets to give her love to her family. That is truly the best gift we can hope to both give and receive.

 

 

A Magical Moment
Monday, November 19, 2012

By Jen Dungee

 

When you think about wedding traditions, the mother-son dance is possibly one of the most memorable moments of the night.  A mother, sending her son off into the arms of another woman for the rest of his life.  A mother realizing that she will now share a place in her son’s heart with someone else, and never feeling so happy for her son.  It’s a magical moment for everyone.

My younger brother got married a few weeks ago and has always looked forward to sharing this special moment with our mother.  There was an obstacle in his way though. Our mom has ALS.  She cannot walk, so how could she dance, we wondered?  My brother, his wife and I gave this a lot of thought.  Should they include the dance?  Could we read a poem instead?  Were there any other options?  Would my mom feel comfortable?  How could we make this moment happen?

I began to think that maybe it would be putting too much pressure on my mom to have her under the spotlight in front of 200 people.  But my brother decided that he wanted to share this moment with my mom and there was no other way around it.  I thought this was an amazing thing to do, but I admit I had my doubts as to whether my mom would feel comfortable about it.

The day finally came, and it was a beautiful fall wedding.  Everything went smoothly and perfectly from the vows to the speeches at the reception.  And then the time came for my brother’s dance with my mom.  With all eyes on them, my brother wheeled my mom out onto the dance floor.  I don’t think I’ve ever heard silence at a reception.  The song they danced to was the Hawaiian version of Somewhere Over the Rainbow.  They looked at each other and the song began to play. 

It is such a beautiful song, and the beat was set at a pace that my brother could move the wheelchair back and forth.  They both sang the song to each other as the music played and it was like there wasn’t anyone else in the room.  As I looked around the room, there was not a single dry eye in the house and the moment can’t be described in any other way but magical. 

The moment was amazing, but what made it so great was the lesson that it taught us all.  To most, my mom has a disease that hinders her from being able to walk, but to her and my brother, it wasn’t even an issue.  They made the wheelchair seem invisible; they made the disease seem nonexistent.  They made the best of the moment they were in.  And so some men might say they shared a special moment with their mom at their wedding, but my brother’s moment was magical.

The disease that my mom is fighting every day is no doubt very challenging, but sometimes, every once in a while, my family gets to share a moment like this.  And I can’t help but think, how lucky we are. 

Jen's mother Sharon receives services through our ALS Association certified clinic at Pennsylvania Hospital and she received her wheelchair through assistance of the Lea R. Powell ALS Patient Services Program. The ALS Association Greater Philadelphia Chapter is honored to be a part of this magical moment.

An All American
Wednesday, November 14, 2012

 

Patrick J. Malloy Jr.

Military Branch: Army

Years: 1954 - 1962

Hometown: Philadelphia, Pennsylvania

Written By: Charles Malloy

 

My father, Patrick J. Malloy Jr. enlisted in the United States Army in 1954. He was 19. He earned The Parachutist Badge or “Jump Wings” and served in the 82nd Airborne Division during the Korean War.  He also earned the National Defense Service Medal and was honorably discharged in 1962.  Paratroopers where a blue and white “AA” on their uniform that represents an “All American.”  My father was certainly an “All American.”  After his military service, he became a loving husband and father, youth sports coach, Teamsters truck driver and union shop steward; he continued to give back to his country by serving in various community organizations, including Levittown Pacific Little League and Saint Michael the Archangel Church.  Part of “The Paratrooper’s Creed” reads:  I shall respect the abilities of my enemies; I will fight fiercely and with all of my heart; surrender is not in my creed.  My father never surrendered in his fight against ALS; he fought bravely and honorably until ALS took his life in 1985.  Our family remembers his bravery and honors his service.   

 

Defined by Service
Tuesday, November 13, 2012

 

 

The Dietzler family is defined by service. Both Charles and his brother Harry proudly served their country during World War II. However, only Charles would make it home.

Charles Dietzler served in the U.S. Army from 1943 to 1946, doing his part to win the war in Europe. His father did not want his sons in harm’s way, but they wanted to serve with honor on behalf of their country, and it was a challenge they faced bravely.

Now, 66 years later, Charles is bravely facing a different challenge. In 2009, he was diagnosed with ALS. Military veterans are twice as likely to develop Lou Gehrig’s Disease as the general population, but just as with his time serving his country overseas, Charles is determined to live his life as best he can while recognizing those who serve alongside him in his own personal battle.

Charles is grateful to his The ALS Association Greater Philadelphia Chapter, his friends and neighbors, and the Veterans Association, who help provide him with necessary care and Hospice. He is particularly thankful to his family, including nine children who live nearby and have supported him along every step since his diagnosis. In fact, Charles and his daughter have been working together on a book about his life and his service.

That commitment to service did not end when he took off the uniform. Following his time in the Army, Charles worked at Villanova University for 30 years and helped them succeed as their controller. After that, he worked as Executive Director of Malvern Retreat House, where people can go for spiritual guidance and peace. The unseen uniform that Charles wears to this day continues to be that of service to others with the strength to lift people up when they are in need. His country needed that dedication and strength in World War II, his family needed it when he returned, his community needed it through his professional life, and now we need to return that dedication and strength to him in our united efforts to fight ALS.

Perhaps it is no surprise that when asked what people should know about his life and ALS, Charles says “more veterans need to be acquainted with what is available. They need to know that others are there for them so that they can get the support they need.” Once again, Charles Dietzler is looking out for others first.

Thank you to Charles and every one of our veterans. Through your example, we will continue the fight to defeat ALS.

 

 

Allies Against ALS
Monday, November 12, 2012

By Graham Kelly

Graham Kelly sent us this story as he prepares to travel from Great Britain to the United States to raise money and awareness for ALS/MND at the Philadelphia Marathon.

 

First let me tell you a little bit about myself. I am 54 years old and I have worked in the National Health Service for 35 years as a nurse. I have been married to my wife Lesley for 32 years and we have 2 sons, Stephen and Andrew.

Lesley is a midwife and has worked in the NHS just like me. In fact we met on our first day in training school! We live in Liverpool in the UK.

In the first picture are Lesley’s parents, Ted and June, and our eldest son Stephen. It is two years now since Ted was taken by Motor Neuron Disease, or ALS as you know it. Ted was a wonderful family orientated man, and it is quite telling that I could not find a picture for you of just Ted on his own. He was always with his family.

 

After working all his life as an electrician he was enjoying his retirement, (and golf!), when he was diagnosed with this awful disease about four years ago. The illness was very aggressive and within two years he was gone. I resolved to do something positive and decided to raise funds for the MNDA to repay them for the support we received and to help fund research into eliminating this dreadful disease. I ran the 2009 London Marathon raising funds for Diabetes UK, (Ted also had diabetes) and the MNDA. I also ran the London marathon again this year raising several thousand pounds for the MNDA. The second picture is me taken by Lesley at the end of this year’s race proudly displaying my finishers medal and my MNDA shirt!

 

The picture was taken on our way to the MNDA reception at Trafalgar Square where we were treated to lunch and a massage for me! It was a wonderful experience for us, very emotional sharing experiences with others as everyone there had a story to tell and I know Lesley drew strength from sharing her story with others. Those guys at the MNDA are really very special and I have pledged to do all I can to help and support them and raise awareness of what they do. No matter what country one lives in, I hope every family living with ALS/MND gets the services they need, like those provided by The ALS Association Greater Philadelphia Chapter.

 

The final picture is of Lesley and I at the Dorchester Hotel where Lesley took me for lunch the day after the marathon as my "treat".

 

Of course when Ted was taken from us a hole appeared but we have done our best to remain positive and to "put a little back" and support those who supported us and now support others.

 

I shall be wearing my MNDA shirt on Sunday 18th November in the Philadelphia marathon. It has my name on the front and "FOR TED" on the back so look out for me! I also have a large Union Jack flag which I plan to wave as I cross the finishing line!

 

The ALS Association Greater Philadelphia Chapter is honored to have Graham visit our area and connect with us as together we work to strike out ALS/MND. Truly, the fight to defeat ALS/MND knows no boundaries! Tune in next week for a picture of our marathon runner. 

Rock on for Rhoda
Thursday, November 01, 2012

Dawn's Angels
Wednesday, October 31, 2012

 

People with ALS are often quick to tell you that Lou Gehrig’s Disease does not just affect one person but instead leaves an impact on an entire family. That is true time and again, but it is especially true for Paula Errington and her sisters Ally, Janice, and Lori.

The first time the sisters were touched by ALS was in 1994 as their Aunt Claire fought her own battle with the disease. They didn’t know much about ALS at the time, but they did know a lot about being a family and being there for each other. During this time, Janice had her first baby and while Aunt Claire could not hold her new niece, Janice held the baby over her so she could get a look at the newest addition to the family. It was a happy moment to remember long after Claire passed away from ALS.

It was not the last time these sisters would face the challenges of Lou Gehrig’s Disease though. Less than eight years later, in April 2002, their mom, Dawn Thompson, was diagnosed with ALS, but Paula knew even before the doctors.

“Mom had a problem in her hand and it was all too familiar,” said Paula. “Her speech was slowing at Thanksgiving and her problems with her hand were more pronounced at a wedding in December. I told my sisters it reminded me of Aunt Claire.”

This time, Dawn’s daughters knew more about what to do and how to help. It helped that, as Paula puts it, her mom was a “tough cookie.” The sisters knew some of what to expect after seeing their Aunt Claire live with her disease, but they did not know that ALS could be genetic.

They did, however, know that they could get help from The ALS Association Greater Philadelphia Chapter. After Dawn was diagnosed with ALS, they met with Susan Schwartz and Jenn Klapper at our ALS Association certified clinic at Pennsylvania Hospital. Susan, Jenn, and other Chapter staff helped get Dawn a wheelchair, a shower chair, a hospital bed and a communication device when her speaking deteriorated. The other sisters weren’t too happy when Paula used the device to make it say “Jan is my favorite daughter,” but jokes like that helped the family bond and treat each other with the same loving, caring attitude as ever. ALS may have changed how they spent their time together, but family, as always, remained their number one priority.

The support from the Greater Philadelphia Chapter did not just give Dawn’s daughter’s a helping hand, it gave them time as well. Dawn’s condition, as Paula puts it, “followed everything in the book. The help from the Chapter was important so that we could have things ready for every stage. The recommendation of a feeding tube was key to spending more quality time with her.”

At their first Chapter event, the 2002 Wayne Walk, there was a lot of rain, but the sisters pushed their mother in her wheelchair around the walk route, determined to get it done together.  That defined how they met the challenge of ALS as a family. Dawn was living in Norristown, PA, but her daughters moved her to Phoenixville so that they could be nearer to her. Her daughters took turns visiting with her, splitting days to make sure nobody faced a problem alone and that Dawn got the attention she needed.

Janice’s first daughter Jackie was born when their Aunt Claire was fighting ALS and Lori had her son Marcus at the same time. Then Ally's daughter Grace was born when Dawn was facing her own battle with the disease. Dawn had a chance to hold her grand daughter Grace before she passed away.  It was clear that family would define this journey in every sense of the word. That included how they would continue the fight against ALS even after their mother passed away in 2003, 18 months and 3 days after her diagnosis.

Dawn’s daughters created the Dawn’s Angels Beef & Beer fundraiser in 2004 to raise money and awareness to defeat ALS. Money from the event goes to their team at the Greater Philadelphia Walk to Defeat ALS®. Since 2004, they have held their fundraiser in memory of Dawn at the Kimberton Fire Company in Chester County, Pennsylvania. Over 400 people are expected to attend again this year on Saturday, November 3rd. The event is on the same day as the Walk to Defeat ALS® because it has always been the first Saturday in November, but money raised will go to support the walk and Chapter programs, many of which were incredibly important for Dawn.

“Each year, we meet at least one new person who has been affected by ALS,” said Paula. “We have brought a lot of awareness to our area, not just of the disease, but of where people can go to get the support they need.”

Since they began the event in 2004, Dawn’s family has raised over $150,000 for the Greater Philadelphia Chapter. Their biggest priority for their fundraising is to support research so that other families will live in a world free of ALS.

Raising money is not all that Dawn’s Angels does though. Paula has been a visiting volunteer for years because she knows first-hand how important quality time is to a person living with ALS. Her sisters have also helped Paula in her role as a visiting volunteer and some of their fondest memories are of adventures together helping a person with ALS live life with hope, compassion, and fun.

As a family, Dawn’s Angels are raising money, raising awareness, raising hope, and raising our spirits. You can help do the same through your efforts at the Greater Philadelphia Walk to Defeat ALS. Thanks to all of Dawn’s Angels for constantly reminding us that nobody is ever alone in the fight ALS and that together, we have hope for a better future.

 

 

Storm Preparedness
Friday, October 26, 2012

 

Hurricane Sandy is moving up towards our region and many of our patients and families may wonder how to prepare themselves in case of a severe weather emergency. Don Farrell, who was an Emergency Preparedness Liaison Officer for PA DEP, working many shifts at the State Emergency Operations Center at PEMA, Harrisburg, PA and who managed the DEP Environmental Emergency Response Program, shared these tips with us:

 

Here are my recommendations for storm preparations with special considerations for your status as an ALS patient. List is not necessarily in order of priority.

1. Consolidate / evaluate emergency kit, purchase 3 days of fresh water and batteries, make sure you have a battery powered radio.

2. Make a list of special / essential supplies and equipment for ALS condition, evaluate powered equipment, need for back-up power. This list will help you regardless of whether you shelter-in-place or if you transfer to a shelter or medical facility.

3. Contact your local police and fire departments and inform them of your status and special needs. Also, contact at least two friends who might be counted on to help in an emergency.

4. Monitor the track of the storm, tie-down or store outside furniture, trash cans, etc, and prepare a "go pack or go-box" with essential /specialized items and supplies, in case you need to evacuate or transfer.

5. Depending on the track of the storm, likelihood of flooding or a lengthy power outage, and what your local emergency management professionals recommend FOR YOU AS AN ALS PATIENT, you may need to transfer to a shelter or a medical facility. If you shelter-in-place make sure you are in an interior room, that you can survive at least 12 hours without power, and that you have people or professionals on stand-by to assist and transfer.

 By starting now you'll have plenty of time to get it right.  No worries!

 

-Don
 

A Family Crusade
Monday, October 22, 2012

 

By Christina Morris

Newark, DE

Chuck and Christina

After my husband Chuck was diagnosed with ALS, I spent almost two years being his sole caregiver at home.  At first it wasn't a big deal.  He needed a little help with his socks, he needed me to buzz his hair, little things like that.  The care necessary has slowly increased, of course.  In May, I started to have trouble meeting everyone's needs.  Our daughter Katie was waking up at the same time Chuck was.  So I had to decide who to get us first?  Chuck, so he could take his pill and then be able to have breakfast at a good time, or get Katie up so she doesn't scream the whole time while I help Chuck?  It usually takes 30 to 40 minutes to get Chuck up and dressed.  Katie and the other kids being up and moving about the house made it even slower for him because it makes it harder for him to walk.

 

So I was dividing my time and running back and forth between the kids and Chuck.  I was exhausted by the time 9:00 rolled around.  Then we came to the ALS Association Clinic at Pennsylvania Hospital and learned about the Howard I. Abrams In-Home Care Program.  10 hours of a home health aide sounded like heaven!  It took us a little while to get the timing worked out, but now we have an aide that comes from 8 to 10 Monday through Friday.  Now I am able to get the kids up and dressed and then our aide comes and she helps Chuck get up, dressed, shaved, and downstairs.  She then does his range of motion exercises and makes breakfast for him.  She also helps feed him if his hands are having a bad day.  She is also willing to do light housework if we needed it done.  She does make the bed for us most days and one day she surprised me and changed the sheets!  What a blessing.

 

The Howard I. Abrams In-Home Care Program helps me in physical ways.  I am not nearly as tired from running around taking care of 5 people all at the same time.  I do not have to run up and down the stairs getting something for this kid, then something for Chuck, then back to the kids.

 

It also helps me mentally.  I was always worried about Chuck while I was helping the kids.  Is he losing his balance?  Is he having trouble?  Does he want/need my  help?  And then when I would help Chuck I would worry about the baby.  Is she getting too close to the stairs?  Is she finding something that someone dropped that she could choke on?  Is she spending too much time cooped up in her bouncer or play pen?  Now I can keep a much better eye on my toddler while having the peace of mind that someone is making sure Chuck has his food, and is not falling or getting hurt.  It is so nice that I can focus on one thing at a time.

 

It is especially nice now that the school year had started again.  I am able to get two hours of school in while the aide is here and I don't have to keep an ear out for Chuck to see if he needs help.  At this point I would say that the aide has made it possible for us to homeschool the kids.  I am so thankful that we can do it because it gives the kids so much more time with Chuck than they would get if they went to the school down the road.  I have talked to some parents and the amount of homework kids have these days is tremendous.  Since we homeschool we can take a break in the morning and Chuck can take the kids down the road to the park or for a walk looking for something in the neighborhood.

 

You can take a walk with Chuck, our family, and over 4,000 others at the Greater Philadelphia Walk to Defeat ALS. Our team, Crusaders for Chuck, is dedicated to making sure other families in our area who are living with ALS can get the care they need while we join together to raise awareness, raise money, and raise hope for a world without ALS.

 

 

 

Join us on November 3rd at Citizen's Bank Park.

 

 

Crusaders for Chuck

A Tale of Friendship
Wednesday, October 17, 2012

There is nothing on this earth more to be prized than true friendship.
Saint Thomas Aquinas

When Joan Pikul heard of her friend Lorraine Balaker’s diagnosis of ALS in June 2008, she was stunned. “I had never heard of ALS-- or Lou Gehrig for that matter,” she recalls. “It wasn’t until after Lorraine told me about her affliction that I started to read up on it and educate myself.  I was shocked when I read how long this disease has been around and how many people are afflicted every 90 minutes.  In fact, when I started to notify our family members of the news, I found out that some of them had acquaintances who were victims of ALS or who already had lost their battle.  I just couldn’t believe that this disease had been around me and I never knew anyone suffering with it.”

 

Joan and Lorraine were friends for close to 54 years, meeting when Joan was just 3 years old, and Lorraine was dating one of Joan’s brothers. That relationship eventually fizzled, but Lorraine remained a special part of the Pikul family. “She has always been included in family events and as I got older we grew closer, for me she was the sister I never had.  She was my sister-in-law’s best friend and is my niece’s godmother,” Joan says. The two got together on Wednesday nights to meet for a movie and dinner at Bennigan’s.

So when Lorraine was diagnosed with ALS after nearly a year of testing, Joan found a way to support her friend: she organized the team “Lorraine’s Alliance” to walk in the Ocean City Board… Walk to Defeat ALS in September of 2008. The team drew over 20 walkers, including Lorraine, and raised $4,000 for the fight against ALS.

But Joan felt like she could do more.   “After I walked in Ocean City I didn’t want to wait a whole year to walk again,” she explains. “I wanted to make a difference and show my support for Lorraine and ALS and hopefully bring awareness to this devastating disease.  When I saw the list of walks on the website I decided to participate in all of them.”

That’s right. In 2009, “Lorraine’s Alliance” was a presence at each of the seven Walks to Defeat ALS in our region, raising $3800 for the cause. Not everyone could make every walk, but Joan did. Anywhere from one to 20 people joined her at each one except the Harrisburg Walk, which Joan attended alone, carrying the flag for Lorraine’s Alliance.

Lorraine herself, and her sister, Arlene, her primary caregiver, attended the Ocean City Walk in 2008 and the 2009 Seaside Walk. Sadly, Lorraine lost her battle with ALS in 2010, but Joan continues to have a presence at multiple walks each year, and always is part of the Walk to Defeat ALS in Seaside Heights and Ocean City.

Joan knows that while Lorraine inspired her to sign up for the Walk to Defeat ALS in the first place, there are many more families that are going through their own challenges with this disease. “My message to everybody who attends the Walk to Defeat ALS is that it is important to continue to show your support. We need a cure for everybody.”

Every year, patients, families, caregivers and the volunteers and staff who see Joan are motivated by her presence and commitment. However, just as Harvey Mackler and others have called the Greater Philadelphia Chapter “the nicest people you never want to meet,” Joan looks forward to a world without ALS.

“It’s good to see the crowds at the Walk to Defeat ALS,” said Joan, “but I wish we  had a cure today. That’s why I continue to walk.”

There is still time to register for the 2012 Greater Philadelphia Walk to Defeat ALS on November 3 at Citizens Bank Park. Click here to sign up today!

Damon's Pit Crew
Monday, October 15, 2012

 

Damon Kane

If you’ve just heard of NASCAR racing, you may think that everything depends on the driver. Any real fan of racing knows that to win, you need a pit crew. Success depends on a strong team.

The same is true in the Walk to Defeat ALS®, as evidenced by Damon Kane and his team Damon’s Pit Crew.

Damon is an architect and formed the firm Godshall Kane with his friend Kevin Godshall in Ambler, Pennsylvania. Not long after he was diagnosed with ALS, Damon stopped working, but Kevin and others at his firm never stopped supporting their friend.

Last year was the first year that Damon’s friends and family came together for the Greater Philadelphia Walk to Defeat ALS®. As Joe Messmer at Godshall Kane said “Kevin and Damon are more than partners. They’re friends. We decided that we wanted to do the Walk to Defeat ALS® as both a corporate sponsor and as friends of Damon and we will strive to do this every year.”

The team calls itself “Damon’s Pit Crew” to celebrate Damon’s love of sports cars and the t-shirt featured his Fiat, Miata, and Mini. In their first walk in 2011, the whole team had a great time and Damon was able to walk the two miles, but this year, as the disease progresses, Damon will navigate the walk with his wheelchair. However, he will have a tremendous amount of support from friends and family who walk beside him.

“My friends have been a wonderful resource,” says Damon. “I like to tinker with cars, and my hands and legs are so weak that it is not safe for me to do much in the garage anymore, but if I need to do something, I simply ask my friends and they step up in countless ways. The guys from my office came to help move my bedroom down to the main level of our house so that I do not have to climb stairs at the end of the day.”

It takes a crew to Walk to Defeat ALS®, but Damon also has a crew to help him take on Lou Gehrig’s Disease every day through the Greater Philadelphia Chapter.

“The ALS Association has been a wonderful resource for my wife Michele and I. They have helped over and over, helping me to get Social Security benefits and providing me with a scooter so that I can get around and go to car shows. I know that as the disease progresses, they will continue to help in ways that I cannot even anticipate.”

Whether at the ALS Association clinic, getting assistance through the Lea R. Powell ALS Patient Services Program, or being surrounded by his friends and family, perhaps the most important thing is that Damon Kane is not defined by his disease.

“What I like about my numerous friendships is that they all treat me the same as I was before this disease started to take me apart bit by bit,” said Damon.

That’s the kind of support you get from a Pit Crew filled with friends, family and caregivers. You can start a Pit Crew of your own for the Greater Philadelphia Walk to Defeat ALS® on November 3rd or support Damon’s team. Sign up today.  

 

 

Delaney Strong
Wednesday, October 10, 2012

 

Karen Delaney and Wes RoseIf you have been following our Chapter for the past year, you may have seen Karen Delaney Shideleff on our general chapter brochure, where she is featured on the cover along with Wes Rose.

Or you may have seen her at Hot Chocolate this past March.

 

 

 

Or on PHL 17's In Focus with her dad Larry Delaney talking with Steve Highsmith.

 

 

 

 

Or at the ALS Express Bike Ride for Research.

Or at Advocacy Day in Washington, D.C.

Or at the Walk to Defeat ALS®. That is where Karen and Team Delaney Strong make their biggest impact and where they will make another tremendous impact this November 3rd at the Greater Philadelphia Walk to Defeat ALS®. It’s clear though that Karen is making an impact in the fight against ALS all year round every way that she can.

That’s because for Karen, this is personal.

Karen was diagnosed with Lou Gehrig’s Disease in 2011 when she was just 37 years old. Even before she was diagnosed, she was all too familiar with ALS. Her mother passed away from ALS, as did her grandfather. Along with her dad Larry, her wonderful sisters, and a tremendous network of family and friends, the Delaney family has been active in the Walk to Defeat ALS® for many years. Last year, Delaney Strong was over 200 people strong and raised nearly $24,000. This year, they are hoping to match or exceed those numbers.

The Walk to Defeat ALS® was always personal. For anyone that meets Karen, it becomes personal to them too.

Even with how much she does to support The Greater Philadelphia Chapter, Karen is not defined by ALS. She continues to live life to the fullest, as she always has, and also has continued her work as a nurse as much as she is physically able. Some families become closer after a diagnoses of ALS. For the Delaney family, that would be nearly impossible, as their family bonds were already an example others would strive for in their own lives.

As a nurse herself, when she started to develop symptoms, Karen knew in her gut that it was familial ALS even before the doctor confirmed it. Because of her family’s involvement with the Greater Philadelphia Chapter, she knew how others were living with the disease, what services were available, and where the latest research was leading us. She had a good idea of what to expect physically, but even Karen couldn’t guess what to expect from the incredible support she receives from family, friends, and The ALS Association.  

“As always, The ALS Association is there every step of the way,” Karen told the Chapter. “The clinics make it very easy. In one appointment, you get multi-disciplinary care from a neurologist, physical therapist, occupational therapist, respiratory therapist, and a social worker. They are able to guide us in making important decisions about our care.”

“The patient services offered through the Chapter are also great. They have loaner equipment like ramps and travel chairs. There is a huge emphasis on helping patients maintain independence and quality of life.”

Karen, and others just like her, receive services they need from the Chapter from their visits to the ALS Association certified clinic, which is funded through the Walk to Defeat ALS® and other programs.

That is why Karen and her family are making sure that they have a top team once again this year. The family and friends of Erik VanVoorhees, who lost his battle to ALS last year, are joining Delaney Strong. Erik was a good friend of Karen’s Uncle Don. They are also using Facebook to raise money and the hair salon that Karen goes to donated their proceeds from Nockamixon Community Day. She and her sisters have all done “Cookie Drives” at their jobs, or as Karen says “bribing coworkers with cookies.”

Nobody needs to be bribed to support Karen and Team Delaney Strong. They see how the Walk to Defeat ALS® helps support essential programs for all people with ALS. Of course, to them, Karen isn’t a “person with ALS.” She is a friend.

Come support one of your friends, and make some new friends of your own, at the Greater Philadelphia Walk to Defeat ALS® on Saturday, November 3rd at Citizens Bank Park.

 

Team Delaney Strong

Offerings
Thursday, October 04, 2012

ALS may be taking Richard Smolev’s ability to speak, but nothing can take his voice. While his disease has changed his life in many ways, he is actually bringing people to life through his first published novel, Offerings, which is available on Amazon.com.

Richard is a bankruptcy lawyer from northern Bucks County, Pennsylvania who practices law at the firm of Kaye Scholer, based in New York City. He always wanted to write and assumed that when he legal career would wind down, his writing career would ramp up. After he was diagnosed with ALS last year, he decided that his writing career would ramp up sooner than planned. Like Kate Brewster, the title character in Offerings, Richard is not the kind of person to let any challenge stop him from achieving his goals in life.

Writing has always been a pleasure for Richard. He would travel a lot for business and write in hotel rooms and on airplane rides. When his friend, author Scott Turow, held a party to celebrate the publishing of his book Presumed Innocent and showed him the basement where he did his writing, Richard’s wife, Nancy Alessi, told him “we have a better basement than him,  you should write your novel.”

As many authors will tell you, writing is easy, but writing well is not and actually getting published is even more difficult. One literary agent told Richard, “You’re a terrific writer, it’s a pity you don’t know how to write!”  What he didn’t know, he was willing to learn, because Richard is always up for a challenge and always looking for ways to improve, so he attended a fiction seminar in New York, where he asked another author in the workshop if she would read his novel.  She said “no, you’re only interested in being published, not in being a better writer.” She then helped him over a year and a half to be better and to master the art of writing, editing, and bringing your story to life.  

Richard’s wife has read several drafts of Offerings and said that the last draft was an entirely different story with a better pace that was easier to read. Tom Jenks, a world renowned editor, introduced Richard to people to write blurbs for the book and another friend showed it to someone who runs a publishing company.

“It’s a world where you rely upon your friends,” says Richard. That is true in the writing world, the legal world and the ALS world.

When Richard was first diagnosed with Lou Gehrig’s Disease, he felt more like a statistic than a patient. Then he met the team at the Lehigh Valley Health Network ALS Multidisciplinary Clinic, which is affiliated with The Greater Philadelphia Chapter. There Dr. Mackin made him feel like not just a patient, but a person. Richard says that perhaps the most important thing about the ALS care he receives is that it is proactive. After his last support group meeting with Wendy Barnes, she connected him with people who could provide him with better tools for breathing and living comfortably.

The network of support from family and friends has been incredibly important. “My children and wife have been extraordinary and strong throughout the entire process,” says Richard. “She is always worrying about me and not worrying about her and I appreciate it so very much.” Their friends have circled the family with a never ending stream of “how can we help you.”

“Our philosophy is to enjoy what time we have,” says Richard. “Why waste time doing things that aren’t fun? That’s why I concentrate on my writing and my work. It’s important to get on with the rest of your life.”

Thankfully Richard has been able to continue to be active in his work for Kaye Scholer. While the firm is based in New York, Richard is able to work from home, and he greatly appreciates the support of both the firm and his clients. “The ability to continue to deal with those intellectual challenges is of tremendous importance to me. It keeps you vital.”

Richard Smolev was diagnosed with ALS one year ago. His voice is swaying and his fingers are not cooperating as he’d like, but his mind still works just fine so he can continue to do the work he loves, enjoy the people he loves, and accomplish the things he’s always wanted to do by bringing characters to life. His first book is out this month and his second should be out next year. While Offerings should make for great fiction, we at the Greater Philadelphia Chapter are glad that we can play important characters in the real life of Richard Smolev while he puts life to paper.

 

 

Click here to order your copy of Offerings by Richard Smolev.

Richard is one of many people with ALS in the Lehigh Valley. Sign up to support the Lehigh Valley Walk to Defeat ALS today.

 

 

 

 

A Better Path
Tuesday, October 02, 2012

Chuck Morris has used his talents to put people on a better path in life. As a teacher and a correctional officer, he has seen first hand how important it is to think outside yourself and to be there for people in need.  Now it is our job to put Chuck on a better path, in this case literally.

Like a lot of people, being diagnosed with ALS meant that Chuck could not do a lot of the things he loves. For some people, that means giving up a sport like football or basketball. For others, that means not being able to dance like they did when they were younger. For Chuck, it meant not being able to go for walks with his four children. The simple joys in life are hard to measure, but the time spent between father and children can hardly be called simple. To Chuck and his wife Christina, that time is the best part of the day.

The support that Chuck receives from The ALS Association Greater Philadelphia Chapter, as well as from his church, his friends, and his family, allow him and his wife to continue to enjoy their time with their children. His friends from church have helped him with lawn care, cleaning and other tasks, which let Chuck be the thing he’s always enjoyed most – a father.

Still, while his community is a tremendous help, that alone doesn’t make it easier to spend quiet time on walks with the kids, or doing their other favorite activity, geocaching, where they can do their own real life treasure hunting.

Thankfully the Greater Philadelphia Chapter is able to provide the support for Chuck to live a fuller life with Lou Gehrig’s Disease.

Said Chuck: “The ALS Association has been a wonderful support from the very beginning!  We can't imagine going through all of this without their help.  We love Melissa, Jennifer, and Gail (we see them every time we come up for clinic) and Wendy is great as well. We have received help navigating Social Security, Long-Term Disability, and Medicaid.  They also helped with how much and when to tell the kids, as well as guiding us to so many things from the loaner closet such as a shower chair, walker, companion wheelchair, power scooter, lift chair, and stair glide.”

All of these things help us put the emphasis on person in the phrase “Person with ALS” and, even more importantly, focus on family in the phrase “family with ALS.”

Since Chuck sent his first email to us about the support from the Chapter, he was able to receive a power wheelchair. Now he can resume his walks with the kids.

While the cure for ALS might not be available tomorrow, though our research initiatives get us closer every day, this is what hope means to us. Hope that the next day for a family with ALS can be better in a meaningful day. Hope that family walks can begin again.

 

To make things even brighter, Christina told the Chapter: “Chuck asked me to write and let you know that he thinks he has found a way to take the kids geocaching again.  There are a couple of parks near to us that he can get to in his power chair.  He will need Maddie or I to use the GPS, but he is very excited to have found a way of doing it again.”

Chuck’s walks with his family may not be the same as before he was diagnosed, but they are walks that are just as special. That’s why his family will continue to walk on November 3rd at the Greater Philadelphia Walk to Defeat ALS®. We hope you can join them as we Walk to Defeat ALS together.

 

Patient Services Update: Anxiety
Monday, October 01, 2012

By Judy Lyter, RN, MS, LPC

Do you find yourself worrying excessively, maybe even feeling panicked?  Some call this “stress”; others refer to it as having “anxiety”.   Anxiety is a normal reaction to a stressor but when it becomes excessive then it becomes a problem.

Some of the symptoms reported include: a feeling of uneasiness; repeated thoughts; nightmares; problems sleeping; cold or sweaty hands and/or feet; shortness of breath or rapid heartbeat; skipped heartbeats; inability to be still or calm; dry mouth; numbness/tingling in the hands and/or feet; nausea; muscle tension; dizziness. Most of us have felt some of these symptoms over time but when they are frequent it affects our normal day.

Stress/anxiety can come from any event or thought that makes you feel frustrated, angry, nervous or out of control.  Many people feel stress when they face change or need to define a new “normalcy”.

Anxiety, when coupled with ALS can impact both the patient and the caregiver. It’s important to remember that what relieves anxiety for one doesn’t always work for everyone.

Balance your time with some “me” time away from focusing on your illness or care giving. Some ideas for doing this can include:

  1. Pursuing a hobby, some social time with others, a good movie, etc.
  2. Music
  3. Internet/reading
  4. Positive self-talk, meditation, deep breathing
  5. Support groups
  6. Counseling
  7. YOGA,  or other forms of exercise
  8. Journaling
  9. Massage therapy
  10.  Medications

Try to hang on to routines that define “normalcy” in your life, knowing that with ALS it is sometimes necessary to redefine “normalcy” . Most of us thrive on repeatable routines!

Admit to yourself that you are feeling stressed and anxious and try to pinpoint what is causing it. What had you been thinking about or doing prior to feeling this way? If you know what the anxiety is all about, what can you do to react differently or to change the situation?

Are your expectations for yourself too high or are you putting too many “should do’s” on your list?

Are you able to give yourself positive praise for even the smallest accomplishments?

Reward yourself by taking a break from the stress by changing your environment, socializing, getting out, or doing something you enjoy.

BREATHE! When we’re anxious, our breathing becomes shallow and our lungs don’t quite inflate. When this happens, there isn’t enough force to carry the oxygen around to all of the cells to help them regenerate. The brain is then deprived of the anti-stress hormones it needs to carry on.

Eat well (and take time to eat!).  If you are being fed by a feeding tube, keep it on a schedule that you feel satisfied and don’t miss eating the food as much. If you are the caregiver, please take time to eat a good diet.  You need nourishment to stay healthy.

Allow others to be a part of your circle to help and to maintain friendships. They are very important for both of you. 

Helping yourself to draw on some of these positive suggestions  can make a meaningful change in reducing the feelings of anxiety and/or panic.  

Click here to learn more about ALS Patient Services, including the ALS Association Clinic at the Penn State Milton S. Hershey Medical Center.

Visit us online to learn about Nurturing the Nurturer on Sunday, November 11 in King of Prussia, PA.




Milt's Tilt
Thursday, September 13, 2012

 

Milt Sierra doesn’t see problems, he sees challenges to solve. Before he was diagnosed with ALS in 2010, he kept tripping over his feet. While he may not be a world renowned geneticist (at least as far as we know), he has found his own way to help himself and others living with Lou Gehrig’s Disease.

For 15 years, Milt worked as a truck driver, going many places in the country and meeting a lot of people along the way. Perhaps that is what helped make him the amiable person he is today, though it is more likely he was always a happy jokester and that just gave him an opportunity to share his humor with others. While ALS is no laughing matter, Milt can find a way to laugh about even the most difficult situations, which can give him an opening to let others understand Lou Gehrig’s Disease a bit better.

If Milt has a problem in life, he always tries to fix it himself first, and if that doesn’t work, at least he’ll get a laugh out of trying.

So when Milt tripped and broke his pine walking stick, he decided to make one himself. First he did it to keep himself occupied, and now he’s making more sticks to challenge himself to create and have fun along the way. He’s also seen how he can turn his new hobby into a way to help others.

Milt saw an opening to share his craft after attending the Support Group in Cherry Hill, NJ. There he met Frank Gabrielli, another person with ALS, and a kindred spirit in terms of how they see life. Together they and others at the group could learn from each other, enjoy each other’s company, and find ways to help. “I try to make everyone at group laugh, or make them cry. I’m always kidding,” said Milt.

This summer, Frank held a fundraiser called Cut-A-Thon for ALS. Just like Frank and Milt’s personalities, it was a beautiful day that put a smile on everybody’s faces. Milt created a walking stick just for Frank’s event that sold for a few hundred dollars, helping them pass their $10,000 goal.

Like his friends at the Cherry Hill group, Milt appreciates the support he receives from The ALS Association Greater Philadelphia Chapter. That’s why he went to work creating a special walking stick for Jen Klapper, the nurse who runs his group, because “she does so much for us.” That stick is a reminder that Milt and Jen, and in fact all families and the chapter, are going through this journey with ALS together.

Having a large family and a great network of friends and neighbors has helped instill in Milt the knowledge that nobody goes through any challenge alone in life. Milt was one of eleven children and his siblings live all over the country. He has been married to his wife Edy for 24 years, with two sons from a previous marriage. His mom is still living and shares his young spirit.

When Milt goes down to his local park, he likes to hear and see the kids laughing and playing. “They don’t know how lucky they are,” he says.  “We all take life for granted, but I don’t take anything for granted.”

He also doesn’t take his neighbors for granted. Milt and Edy live in Delanco, New Jersey and they appreciate it every day. “We found this place by mistake, but it’s been great,” says Milt. “Friends and neighbors are God’s gift to me.”

While Mlit may be making walking sticks by himself, he’s giving others the lift they need to keep moving in life, no matter the challenges the face. And he know that with the support of his family, neighbors, and the friends he has made through The Greater Philadelphia Chapter, he knows that he won’t have to face any of his challenges alone. That will put a smile on anybody’s face.

Milt with his walkign sticks


Milt is planning to attend the Rehoboth Beach Walk to Defeat ALS on Saturday, September 15th. Join him there and say hello!



 

A Life Long Commitment to Serving Others
Monday, September 10, 2012

 

Chuck Morris has ALS, but, like every other person battling this disease, that is not what defines him. It is also not what defines his family.

The 35 year old Newark, Delaware native was always active. Before he was diagnosed with ALS, Chuck liked to play baseball, hike, and finish and refinish furniture. He loved to geocache and would often take his kids with him. In the summer of 2010, he started to notice some twitching in his arms and what he describes as clumsiness in his left hand and feet. Every night when he came home from work he was tired and didn’t have the energy or endurance to go geocaching much anymore.

After Chuck and his wife Christina saw his primary care doctor, who thought he might have Multiple Sclerosis, he went to see a neurologist, which led to more tests. Many people who have gone through similar processes with ALS might well recognize the many tests and visits Chuck went through before getting a final diagnosis. His doctor told him that it might be a motor neuron disease, but wanted Chuck to get more tests and do some physical therapy. A few weeks later, Chuck and Christina took matters into their own hands and visited the ALS Association Clinic at Pennsylvania Hospital where they met Dr. McCluskey, who ran a test of his own to be sure before confirming the diagnosis of ALS.

It was very hard for Chuck and Christina to hear those three letters, but they are glad that they went to the clinic and met Dr. McCluskey. Getting a diagnosis was scary, but Chuck was concerned not for himself, but for his four kids, his parents, and his wife, who was pregnant at the time they got the news. However, having that confirmation meant that they had a direction and that they could get the support they needed. Chuck is very appreciative of that.

What makes Chuck appreciative of Dr. McCluskey and the caregivers at the ALS Association Clinic at Pennsylvania Hospital is his own life history putting people on a better path in life. Chuck knows first-hand that getting bad news can be tough, but it can be the start someone needs to do good things in life and to be a stronger, kinder person.

That knowledge came from his experience as an elementary teacher, followed by work as both a correctional officer and a correctional counselor, where he was involved in determining what programs and activities would best prepare inmates for a crime free life after release. Once you meet Chuck and learn about his history, it is clear that he was always destined to put people on a better path in life.  His best example is how he acts as a father.

Charles and Christina are the loving parents of four young children, ages 7, 5, 3, and 1. His wife home schools partly so that he can spend more time with them. Life is quite chaotic around the Morris house, which would be the case with even one child under 10, much less four, but they value every day. Christina provides a great deal of assistance for Chuck, but he is grateful that his children do their share as well, including turning the lights on and off, carrying his drinks and plates, getting his computer for him, and relaying messages. Chuck says, “While I hate the fact that my kids have to deal with this disease, I hope this experience will introduce them to a life-long commitment to serving others.”

Chuck and his family are in fact dedicated to serving others and will continue to do that at the Greater Philadelphia Walk to Defeat ALS on Saturday, November 3rd. “The walk was an encouragement to me last year and we hope to have an even larger group this year,” said Chuck.  “My mom just had double knee replacement on Friday and she says she'll be there if someone has to carry her around the route!”

It should come as no surprise that when people need help, especially people fighting ALS, Chuck and the entire Morris family will find a way to be there.

This is the first in a series about Chuck Morris. Look for more posts soon here.




Pitch to the Katcher
Wednesday, September 05, 2012

By Donna Katcher

 

Donna and her sister DawnIt was June of 2005 when, after months of testing and a second opinion, I received my diagnosis of those three letters, ALS.  Throughout the process of testing and ruling out other diseases like MS and Lyme’s Disease, I was starting to realize the path I was going to travel. I am a baseball fan and I knew the story of Lou Gehrig and his abrupt departure from the game he so loved and his speech of being the luckiest man when he was diagnosed with ALS.  Then there was the Jerry Lewis MDA Telethon every Labor Day weekend.  Growing up as a kid and as a family we always watched the telethon, excited to watch the people present their donations towards the cause of MDA and pass new milestones of funds raised to support patients and their families.  Then there were the stories of Jerry’s kids with different forms of MD and there always was a story about someone with ALS.  Watching the telethon on Labor Day weekend in 2005 was very different.  Never would I have ever imagined or thought I would be a person with ALS.

During the period of time when all the testing was being done with Dr. Mackin at the Lehigh Valley Health Network ALS Association Clinic, I left the office one day with my husband, Paul, to have more blood work done.  On our way I said to Paul, let’s just hope it’s not ALS.  His response was, what’s that?  I said it’s like a death wish.  He had done some research and the only thing that seemed to impact him the most was the average life span of 2-5 years from diagnosis.  The day we received the diagnosis was the worst day of our lives together.  Dr. Mackin asked me how I felt.  My only response was, well, I’m not going home to die!  For the next few months, I kept busy trying to accept the diagnosis and move on with life.  Surely our lives were changed but it didn’t mean that we had to stop living.  We started putting together a bucket list of things to do, places to go and anything that was fun.  Two years after my diagnosis I resigned from my job as an office manager for two doctors.  It was a busy office and the fatigue was taking a toll on me.  I didn’t have enough energy to do the things we wanted to do and weekends were spent trying to catch up.  It was a difficult decision to make at the time but I realized quickly that I had made the right decision.  We continue to explore the beauty of our national parks and just enjoying our time together will family and friends.

Since my diagnosis, I have continued to attend the Lehigh Valley ALS Association Clinic with Dr. Glenn Mackin.  I like the fact that I can attend a clinic so close to home without traveling to Philadelphia or Hershey.  It is a multidisciplinary clinic that I visit every three months.  In one clinic visit I am able to see Dr. Mackin, a nurse, a physical & occupational therapist, a respiratory therapist, speech therapist, nutritionist and a social worker as needed during each clinic I attend.  The clinic also works closely with The ALS Association Greater Philadelphia Chapter.  The mission of the ALS Association is to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.  The clinic and the ALS Association have helped me out through the loaner closets they have with a bi-pap machine and a transport chair and also offer support to help patients obtain medical equipment through their insurance company.  There are also support groups for patients and their families to attend.

The ALS Association also hold special events for patients and their families such as a day at Longwood Gardens, holiday parties and many other events.  The biggest fundraising event for the ALS Association is sponsored by the Phillies which adopted ALS as their primary charity.  This event has raised over $13.5 million for the fight against the disease.  I have attended this event the last five years and this is by far my favorite event to attend.  It is one of my most invigorating days and having the opportunity to meet some of the ballplayers is an awesome experience that I will never forget.  Some of the most memorable conversations I’ve had were with Jaime Moyer, Chris Coste, Cole Hamels, Ryan Howard, Chase Utley, Brad Lidge and Harry Kalas.  These players actually took the time to talk with me and I truly felt their sincerity.  We can all be thankful for the support that the Phillies organization does for the ALS Association.

It was a year after I was diagnosed, 2006, that my sister, Dawn and my husband Paul started talking about forming a team for the Lehigh Valley Walk to Defeat ALS.  It was time for us to get involved with fundraising to help out The ALS Association Greater Philadelphia Chapter.  First thing was naming our team.  I have a love for softball and played in high school and beyond so without a lot of thinking our team name was “Donna’s Dugout” and our slogan of “Pitch to the Katcher”  ‘Strike out ALS’ made the team name complete.  The irony to the Katcher with a ‘K’ and not the ‘C’ was that I married Paul whose last name was Katcher with a ‘K’.  Never could I have imagined over 60 walkers joined our team and raised well over $10,000!

During the winter of 2007 I was having lunch with Joe, an old friend from my softball playing years and I was talking about doing some kind of fundraiser to raise more money.  Joe told me about the Phillies Ballgirls and that they play charity softball games.  He offered to make contact with the Phillies and get details.  We all decided that this was a great idea but who would we get to play the Ballgirls?  Joe’s idea was to have the Patriots Old-Timers play the Ballgirls.  The Old-Timers were a group of guys, 65 and older that enjoy playing a fun game of slow pitch softball.  This turned out to be a match made in heaven!  After the game both teams were already talking about next year’s game.  For the next four years the event got bigger, the crowds got bigger and the money raised grew each year.  We brought in entertainment including the Phanatic, FeFe & Ferrous and lots of Chinese raffles and silent auction items all of which contributed to the fundraising with proceeds benefiting the LV Walk to Defeat ALS.  These events could not have taken place without the help of my family and friends!  There is a lot of time and effort that goes into an event like this and for five years we were blessed and very fortunate to have mother nature on our side.  A day of rain could have wiped away all of our efforts. 

Donna and Ferrous 

People have asked me about the time that is put into the event and why I do it.  It’s simple for me.  Why not put my efforts into something that is positive and will benefit many?  It’s a matter of not asking why this happened but what am I going to do to live my life.  It’s also a way to raise awareness of ALS.  Anything I can do or be a part of, personal or other is the best dose of medicine I can ever ask for.

Participating in the Lehigh Valley Walk to Defeat ALS is always invigorating.  It is an amazing day with all of the patients, families and friends all supporting one another.  It is also a day to remember all of the people who have lost their courageous battles to ALS.  By supporting The ALS Association in their mission to lead the fight to treat and cure ALS through global research and empowering the people living with ALS and their families to live fuller lives and providing them with compassionate care and support can only be done with your support.  I hope for better treatments that will allow all patients to live a longer and fuller life and hope that one day we will have a world without ALS.  I believe anyone who supports these events will realize the benefits to patients to a disease that knows no boundaries.  In our six years of participating in the Lehigh Valley Walk to Defeat ALS, we have raised $90,000!

 

Every day I have new hopes and new dreams for a better day.



Fighting ALS by the Yard
Tuesday, September 04, 2012

 

Heidi visted with LeSean at Training Camp

 

LeSean McCoy is one of the best running backs in the league, but even he can't win football games by himself. Just like playing football, in LeSean's efforts to score a victory over ALS, he can't do it alone. He needs a team. That team includes Heidi Finefrock, who is joining with Shady McCoy to Fight ALS by the Yard.

In February of 2009, Heidi had surgery after having a bleeding brain anuerysm. It was a scary moment and she says she was lucky to survive it. Heidi's positive attitude and huge smile probably helped too. A few months later, she started to feel cramps in her legs and arms, but thought she was just being lazy. At the same time, she started to get very hoarse talking and thought it was because of her surgery. That was a perfectly logical explanation, and she went on taking chances and loving life. However, her condition continued to worsen.

In July of 2011, Heidi started to get drop foot and  her voice started to slur very badly. Her family doctor sent her for tests and she met Dr. Binner in Ephrata, PA. Halfway through her EMG, he asked her if she had ever heard of ALS. It wasn't long before she met Dr. Simmons at the ALS Association Clinic at Hershey Medical Center who gave her the official diagnosis of Lou Gehrig's Disease.

Heidi has lost her voice totally. She has braces on both legs and has lost her ability to walk like she used to just a few years ago. What she hasn't lost is her bright smile and love of life. That smile got even brighter when she met LeSean McCoy and learned that while he was running for touchdowns on the field, he was also running for a cure for ALS as well.

This past June, Heidi went to the LeSean McCoy Celebrity Softball Game at Clipper Magazine Stadium, home of the Lancaster Barnstormers. When the manager met her, he invited her on the field to meet some of the players. Heidi got to meet Michael Vick, DeSean Jackson, and, of course, LeSean McCoy. "Then and there, I decided I would join him in his fight against this dreaded disease. He is a hoot and his parents raised a perfect gentleman," said Heidi. Now the whole community is ready to join Heidi and LeSean.

Heidi Finefrock is committed to getting as many sponsors for the Fight ALS by the Yard program as she can and is sponsoring his efforts as well. "I am letting my fight in God's capable hands," says Heidi, "but we all need help with research, so please join us."

You can join LeSean's team and Fight ALS by the Yard by pledging your contribution per yard Shady runs this season by visiting www.alsphiladelphia.org/fightalsbytheyard . Just like Shady's work on the field, this is a victory we can all win if we are in it together.

Want to blog because you can?

Contact Tony Heyl at
(215) 643-5434 or tony@alsphiladelphia.org


Fall 2012 Blogs

Finding a Cure Together

Giving To the Next Generation

A Magical Moment

All American

Defined By Service

Allies Against ALS

A Cappella Love Story

Dawn's Angels

Storm Preparedness

A Family Crusade

A Tale of Friendship

Damon's Pit Crew

Delaney Strong

Offerings

Chuck Morris - A Better Path

Patient Services Update: Anxiety

Milt's Stilt

Chuck Morris - A Life Long Commitment to Serving Others

Pitch to the Katcher

Fighting ALS by the Yard


 
 

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.