When David Cole was 10, his Uncle, Dustin Myers, was diagnosed with ALS. Dustin was just 26.
When he became symptomatic, Dustin, who used to play catch with David, lost the function of his left arm first and could no longer play with his nephew. He died less than two years later in May of 2010.
“It just absolutely crushed me,” Cole, who lives in Honey Brook, said.
The traumatic experience of losing his uncle is part of what led Cole and his mother, Dustin’s sister Mandy Podehl, to get so involved with the ALS Association Greater Philadelphia Chapter and take up the crusade against the disease.
ALS (Amytrophic Lateral Sclerosis), better known as Lou Gehrig’s Disease, is a degenerative neuromuscular disease for which there is no cure and no known cause. Little is known about it.
On April 22, Cole and Podehl travelled to Harrisburg for the ALS Association’s Pennsylvania Advocacy Day. At the event, they were able to share their story with state legislators and present an award to Pennsylvania Rep. David Millard (R-Columbia County) for his support for families with ALS.
Their experience was largely positive, and Podehl said every single representative they met took the time to get to know David and get invested in his story.
“You meet all these different people who are so supportive, and they seem like they want to help as much as possible,” Cole said.
In recent years, state funding for ALS patient care services has dropped. Last year, however, the association’s efforts paid off, thanks in part to Mandy’s work in Harrisburg, and the Pennsylvania legislature voted to give about $300,000 to the cause. This year, the budget has tentatively increased that number to $350,000.
All of the money the organization raises goes towards helping families dealing with ALS and partnering with research institutions. But awareness is still an obstacle.
“Every single person I talked to would say, ‘Oh, what’s that? Is that Lou Gehrig’s Disease?’ And I would say yeah, and they would still say, ‘What is that?’” Podehl said. “So nobody really understands what this disease is and what it does. It’s completely debilitating. It takes away a person’s function from top to bottom.”
The association’s clinics offer all of the specialists someone suffering from ALS needs - pulmonologists, therapists, psychologists, neurologists, and others – all in one place. The association also offers equipment rentals for everything a patient needs, as well as transportation programs for those who don’t have access to wheelchair-accessible vans.
Despite the quick progression of the disease in her brother and his young age, Dustin “never lost his faith or his hope,” Podehl said.
“It was such an inspiration to me that he just never really got angry, never gave up,” she added. “So when he passed, I had to make some good of it. I had to do something.”
Shortly after Dustin passed away, Jorge’s Walk to Defeat ALS was started in Bloomsburg, where he had gone to college. Getting involved with that walk was Podehl’s first step into the fight against the disease.
In the walk’s first year in Bloomsburg, it raised $45,000 for the association.
The family also participates in the Philadelphia walk and is getting involved in the association’s community ambassadors program.
Now, Cole and Podehl plan to make the trip to Washington, D.C. to speak with national legislators about their story and to gain support for ALS patients.
Cole also said a club at Twin Valley Middle School, where he’s a student, started up a collection during the school year to donate to the ALS Association. He has also reached out to his Boy Scout Troop in Elverson to see what they can do.
Podehl has lots of ideas for annual fundraisers, and her ultimate goal is to have half of their efforts donated to the association, and the other half put aside for a scholarship in Dustin’s name. They have already started a collection, thanks in part to the efforts of Dustin’s friends and coworkers before he passed away.
“I would hope that some day there’s a cure and I don’t have a reason to do this, but until that day comes, I just want to make sure people understand what this disease it and what it does to a person,” she said.
“Try to support however you can, because this disease can just absolutely devastate a family,” Cole added.
People can support The ALS Association Greater Philadelphia Chapter by visiting www.alsphiladelphia.org or calling 215-643-5434. They can also connect with the organization via social media at Facebook.com/alsphiladelphia or on Twitter @alsphiladelphia