ALS Ice Bucket Challenge Progress

 

John's Match

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We want to make life better for families like ours
who are living with ALS…today and in the future.

 

 

Six years ago, ALS came crashing down on my life. The hardest part wasn’t giving up golf or working out, or even being confined to a wheelchair; those are obvious. It was that fleeting moment when I felt there wasn’t anything I could do about it.


But everything changed when my wife Loretta and I realized we were not alone. We live in Southampton Township, New Jersey and the ALS Association has been with us since my diagnosis. In fact, their staff of caring professionals was always a step ahead and became our go-to resource for help at each turn. Because we are so grateful for the Chapter’s amazingly supportive network, we both agreed that we would do everything we could to accelerate progress in ALS research, patient care, and advocacy.

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The ALS Association Greater Philadelphia Chapter serves ALS families in the eastern half of Pennsylvania, central and southern New Jersey, and the state of Delaware.

Your gift provides funding for the vital progress we embrace…


Progress in Research – Because research is critical to finding a cure, I encourage everyone who can, to participate in research studies like I do. This includes The National ALS Registry, the largest ALS research project ever created. It helps researchers learn who gets ALS and connects people to clinical trials. I also provide a patient’s perspective as a member of the Department of Defense’s Consumer Review Panel (CDMRP) which investigates groundbreaking ALS research. Every year, The ALS Association funds millions of dollars in research, in 150 laboratories around the globe because of your contributions.

 

Progress in Care – I look at the Chapter’s website and see it now supports EIGHT comprehensive ALS Treatment Centers! Any time Loretta and I need help, the Chapter is just a phone call or email away. At our South Jersey Support Group, both our social worker and the participants in our group offer such valuable information and insight. My personal fight is fueled by the courage of ALS families I encounter. This disease can be very lonely. I see a need so great and I see The ALS Association care services team filling that need.


Progress in Advocacy – This year, Loretta and I are the proud recipients of the Chapter’s Flame of Hope Award for Advocacy. Advocates like us use our voices to request funding from legislators in both Washington, DC, and in our home state of New Jersey. Sharing our stories gives us empowerment and hope. We have worked
to secure millions of dollars for critical care and research, advocating on behalf of the entire ALS community. I believe ALS is not incurable — just underfunded.

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Our friend Karolina and her children Emma, Sophia, and Zach completed the Ride to Defeat ALS to honor their father and to support me. Please join all of us and help us finish this fight against ALS.