ALS Association volunteers are a special breed of superhero — they are the heart and soul of this Chapter. They give up countless hours of their personal time to provide us with all manner of help – in the office, in the homes of people living with ALS, on our board of directors, as public policy advocates, on our committees, at our special events – without asking for anything in return.
So many of our volunteers have been personally impacted by ALS, and have seen up close and personal the devastation the disease brings upon a family. These wonderful people become volunteers to fight for a cure and to ensure that other families are supported physically and emotionally on their disease journey.
Two of those special volunteers are Don and Claire Bratcher, who have been ALS warriors and volunteers for close to 15 years. Claire recently agreed to share their story and we’re delighted to post it here in her own words.
And so my story begins. In 1990, at age 80, my dad, Larry Boberschmidt, Sr., was diagnosed with spinal muscular atrophy and died at age 82. In 1994, at age 55, my sister, Marie Serena was diagnosed with ALS and died at age 57. In 2002, at age 55 my sister, Eleanor Ecuyer, also heard the words, “You have amyotrophic lateral sclerosis (ALS)” – aka Lou Gehrig’s disease – and died at age 57. I then realized my dad probably was misdiagnosed and also had ALS.
The most common form of ALS in the United States is “sporadic” ALS, which means that the disease can affect anyone, anywhere. Our family falls in to the other ten percent of cases – the inherited form of the disease, called “familial” ALS. Families members who fall into this category have a fifty percent chance that they will inherit the gene mutation and may develop the disease.
Lou Gehrig’s wife name was Eleanor. On July 4, 1939 at the young age of 36, Lou Gehrig announced to the crowd in attendance at Yankee Stadium who came to watch him play, that instead he was retiring from the game he loved because he had been diagnosed with ALS. My sister Eleanor died on July 4th. Coincidence? I don’t think so. Eleanor was probably the most independent person I have ever known, but when you live with ALS, this horrific disease robs you of all of your independence which was, for Eleanor, the most difficult thing about having ALS. She didn’t want to have to depend on everyone for everything. I believe by her death occurring on July 4th, it was a way she showed that she was regaining her independence. Despite all of that, she considered this disease a gift, as it brought people together in prayer who ordinarily would not even speak to each other.
In 2003, I decided that I needed to do something more. I knew that I couldn’t waste any more time with negative feelings about what ALS had done to our family, but decided instead to channel those feelings into positive actions. I reached out to the St. Louis Regional Chapter and asked what I could do to help. That is when the Eleanor’s Hope team was formed and we became a part of the Walk to Defeat ALS. I still felt I needed to do more, so I became a part of the St. Louis Regional Chapter’s Walk committee. I didn’t know it at the time, but not only was I becoming a member of this committee, I was joining a fabulous group of people that I now consider my ALS family.
The Eleanor’s Hope team continues to walk for those who can’t and will continue to be part of the Walk to Defeat ALS as long as it takes. As the song goes, “I Can Only Imagine.” I would add to that and say that my prayer is “I can only imagine a world without ALS.” I believe we are very close to realizing that dream.
Claire and Don Bratcher
Eleanor’s Hope Team Captain