I am Donna York

a family member of someone we've lost to ALS

“I believe your father has ALS and I wouldn't wish it on my worst enemy.”

My dad was diagnosed with ALS in 2007 after 18 months of having symptoms no one could explain. After a battery of painful tests for my father, I called the doctor in New York to see what the diagnosis was. He said, “I believe your father has ALS and I wouldn’t wish it on my worst enemy.” At the time, we had no idea what ALS was or how devastating it would become. 


My dad was the strongest man I’ve ever known. He taught me, by example, to be the best person I can be, to love my kids with everything I have, to share the gifts that God gave me, and if I’m given the opportunity to help someone — always take it. Slowly he lost his ability to talk, swallow and walk on his own. Eighteen months later, he took his last breath at home with all seven of his children there to say goodbye. We didn’t need any financial assistance — my dad was a veteran — so he received benefits from the VA, he had a retirement he could draw from and he had seven of us living close enough to take care of him at home. Not long after my dad passed, a good friend’s husband was diagnosed with ALS and, because they had no insurance and very little savings, she had to quit her job to stay home and take care of him. By the time he passed away, she was financially devastated. Her house was in foreclosure, and she had nothing left. I asked myself where people in this situation can get help and found very little resources for families facing financial hardship due to ALS. I decided to find a way to provide those resources, and I took that leap of faith! It has profoundly affected me as I get to know some of these families on a very personal level. One of the hardest parts of our journey with ALS is not having anyone to talk to that personally experienced it. A short time after my dad passed away, I got connected to a couple that lost their 33 year-old son to ALS. We talked and cried for two hours. It was so comforting to speak to someone that finally understood how devastating this is for families. I now can be that person for others going through it. Sometimes I’m just a shoulder to cry on, an honest answer to what might come next, or someone to assure them it’s okay to feel the way you do. One of the biggest challenges I faced when I started Hark ALS was how to raise money for a disease that most people know nothing about and feel it is so rare that it will never affect their family. A friend came to me and said, “I want to hike the 48 highest peaks in the White Mountains, but I want to do it for someone other than myself. I thought a lot of your father and I want to honor him.” How do we use that to raise awareness and funds? We filmed a documentary — Hope on the Horizon: An Expedition for ALS — which started a yearlong journey to hike the 48 peaks. We provide financial assistance to families in the form of small grants for various needs associated with ALS. Our more successful, and different, approach is for families that need a significant amount of funding to truly make a difference in their lives and enable them to keep their loved ones at home with them as the disease progresses. There is no organization that exists with the resources to provide the level of funding needed by these families. We work with patients and their families and friends to organize and host a fundraising event using our film as the focus. We also integrate other fundraising activities such as basket auctions, live auctions, 50/50s, etc. The film serves as a way to educate the attendees on what the family is facing as they journey through ALS. These events raise $20K-$100K with 100% going to the family. We started the Hope mobiles for pALS in 2016 for accessible vans. We raise the funds to purchase a van, gift it to a family, and when they no longer need it, they give it back to us to give to another family.

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