August 2015 Volunteer of the Month
To us, he’s Barry
To his wife, his daughters, and so many who have met him since being diagnosed with ALS, Barry Schultz is a hero. It is not a title that he would want, nor is it one that he would accept. Instead, this great friend of the Chapter and the entire ALS Community, would prefer you just call him Barry.
To the ALS Association Greater Philadelphia Chapter, he is also one of the best volunteers and friends anybody could want on their team. That is why he is the August Volunteer of the Month.
Barry’s general friendship alone is not solely the reason he is the Chapter’s Volunteer of the Month, though it certainly helps. Since being diagnosed with ALS in early 2006, Barry has gone above and beyond at every opportunity to make people aware of ALS and to motivate people to make a difference. Along the way, he has found his own motivation from every ALS family he has met.
Less than three months after he was diagnosed with Lou Gehrig’s Disease, Barry joined the ALS Express Bike Ride in New Jersey. He and his wife Susan saw it as their first opportunity to raise money and awareness for ALS treatments and patient care and they weren’t going to hesitate even a second to get involved. That first bike ride with team Barry’s Bikers became the first sign of hope and optimism for Barry as his family and friends rallied to his cause. He was a top fundraiser in his first ride and his team continues to inspire. In fact, they are doing more today than Barry ever dreamed.
Since that first ride, Barry took on all challenges and opportunities to support the ALS cause. Because he is a college basketball referee, Barry was asked on multiple occasions if he would come speak at the annual 4 on 4 for a Cure basketball marathon at Colonial Middle School in Plymouth Meeting, PA. He went for the opening tip off on many occasions and shared his ALS story with the students so that they would understand why they were raising money and awareness for the disease.
In addition to speaking out at that event and many more, including to the student organizers of the Joe Schwartz ’83 Memorial 3k at Haverford College in Haverford, PA, Barry has used his story to influence lawmakers in New Jersey and Washington, DC to fund ALS patient care and research. While Barry does not like to take credit, he clearly has done a good job as an advocate as those legislators with whom he shared his story have helped pass bills on ALS funding and awareness on the state and federal level after hearing his story.
Part of what makes Barry’s story so influential may be the humility with which Barry speaks. The last things that Barry would want you to call him would be heroic or courageous. Even as he rallies his team of bikers for ALS Express each year, he puts the stories of others first, pointing out that many people with ALS have a tougher road to travel than he does. He doesn’t just fundraise and attend the Walk to Defeat ALS® in Philadelphia, he fully lives the motto of “Walk because you can.” As long as he can do it, Barry will, and he will be walking, riding, and advocating for others.
Members of the Greater Philadelphia Chapter staff and board have known Barry Schultz for years. He is consistently involved with events year round, never missing the annual Hot Chocolate event for example, and is always up for raising awareness in new and unique ways, such as when he and his wife participated in one of the Chapter’s first Podcast episodes this spring. To those who work at the Chapter, and all who know him, he’s not a person with ALS, he’s not a basketball referee, he’s Barry. Every other person named Barry has to use their last name because Barry Schultz has taken over ownership of that name for everybody who interacts with him.
Those interactions over the years are why Barry continues to be so effective at fundraising and advocating for ALS families. He puts the very human side first. Not the human side of ALS, but the human side of everything. It’s why his daughter, on the most important night of her life, highlighted him at her wedding day and had donations from her wedding go to The ALS Association. In the very face of a challenging disease, if you tell Barry “I’m sorry to hear that you have ALS,” he will say “Don’t be, others have it worse.” It is an attitude that profoundly impacts those who meet him and one can’t help but use Barry’s outlook on life to reflect on their own perspectives. If a person with ALS is going to live with such optimism, it gives everybody hope.
After ten years of living with ALS, Barry continues to inspire and motivate people through his simple message of hope and compassion. It’s why he succeeds in helping the ALS cause. As a result, this summer, in his tenth year participating, Barry’s Bikers was the top fundraising team for ALS Express.
Thank you to Barry for your years of work supporting the entire ALS community and for challenging all of us along the way to do the most with our lives. The Greater Philadelphia Chapter is happy to have you as our Volunteer of the Month, but even happier to have you as a friend.