Curtis Vance Foundation Seeks Meaning in ALS, The North Star Monthly, June 21, 2001. Written by Heidi Erdmann Vance.
One autumn afternoon in 1999, Curtis Vance, my husband, attempted to speak with clear, sharp words, "Heids," he said, "do you think that they will remember me?" The words were not clear or sharp because of his weakened muscles, but they stung nonetheless.
Curtis knew he was dying; he had known he was dying for almost a year, since he had been diagnosed with amyotrophic lateral sclerosis (ALS) commonly known as Lou Gehrig's disease. Although he had been forced to let go of his physical being, he had held onto life.
"Curtis, how could anybody ever forget you?"
My Curtis was so afraid that his nine year-old nephew and almost seven year-old niece would grow up and forget that an uncle Curtis ever existed or perhaps only remember him as the man who got sick one day and eventually couldn't walk, use his arms, breathe, eat and could barely be heard. He feared that his death would allow those he loved to forget that Curtis Vance had lived.
And so it came to be on that fall afternoon in 1999 that I promised my husband three things. 1.) To help others to remember his kind, caring soul, giving nature, humor and desire to live each day to the fullest. 2.) That I would somehow, someday, figure out why his ALS gene surfaced at age 25, in order to prevent it from happening to others in the future. 3.) That I would play a role in finding a cure for ALS, and assist others with ALS, just as our wonderful community of Danville, its surrounding towns, and other friends and family had helped us in our time of need.
Curtis and I created The Curtis R. Vance Foundation, a nonprofit corporation, whose purposes include, but are not limited to, public education and funding of research for a cure for ALS and providing assistance to the victims of the disease and their families. It was our attempt to fulfill these three promises.
In our first year, we raised almost $30,000! In January 2001 we donated $5,000 to Massachusetts General Hospital to aid in the process of finding a cure for ALS.
Since then, our foundation has begun to fly! We are hosting fundraisers in both San Francisco, CA and Chicago, IL in April, 2001. The events will hopefully draw 500 people each, and news of the events will reach thousands more. We secured a spot on TV Channel 5 in California to promote the foundation and the event.
Unfortunately, the mother of one of our performers in Chicago has ALS, but she plans to fly in for the event, and bring a busload of over 100 supporters! Since January, I have designed our foundation's web site, www.als-curtisvancefoundation.org, which contains over 40 pages. I was fortunate to have a woman donate her time and energy to design our foundation's logo and brochure.
Our foundation's officers and board members, including Danville's own Beth Chamberlin, star of CBS's The Guiding Light, all donate their time and energy, as do I. Close to 100% of the money raised for the foundation goes directly to the cause. We are dedicated to make a difference in the lives of ALS patients, both present and future.
I thank you for giving me the strength to mold this foundation into a tribute to Curtis' life. You taught Curtis and me how it feels to be loved, cared for and protected, and as a result, there is a burning desire inside of me to share this love with others who are willing to open their hearts, both with and without ALS.
Memories of Curtis remain vivid in my mind's eye and soul, and I pray that they will never diminish, but I have also learned to only hold onto the part of Curtis that he needs me to keep.
I recognize the need to let him fly, and for me to go on. As time goes forward, so do I, and with the passing of each moment, my character continues to change and grow. Many of you urged me to leave the beautiful Northeast Kingdom for the winter, knowing that I needed to fly, too, and yet you have held on to the part of me that needs to always remain.
When I return home, to Danville, Joe's Pond, our gravestone and our orchard, I feel as though I have never left. Thank you.
My and Curtis' love and respect of Vermont and its people is intense and real, and I hope that you will all continue to support our foundation, which represents the love that you gave to us.
The Curtis R. Vance Spring Celebration 2001 is on June 23rd. I welcome each and everyone of you to join in the festivities. Please allow it to be a time for you to come together with loved ones and celebrate life, and remember those that you have lost. Woo Woo, Curtis' black Chinese Sharpei, and I look forward to seeing everyone there!
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