Age: 61
Residence: Highland Beach
Family: Husband, Michael; two sons
Career: Retired teacher
Cause: The National Fragile X Foundation, an organization formed in 1984 to help families, spread awareness and support research for all Fragile X-associated disorders.
Q: Why do you volunteer?
A: I was the mother of a son who had something wrong with him, but no one could say what. Before Dan became diagnosed with Fragile X at 21, I had to go it alone without much help. I volunteer so other people don't go through what I did.
A: NAXF is the largest and strongest group lobbying to support research in Fragile X. They also offer support and information to people concerning Fragile X-associated disorders. It's where I can make the greatest difference in helping others.
Q: Describe your volunteer role.
A: I am a volunteer at Dan's weekly bowling league in Boca Raton. For the Special Olympics, I volunteer at the adult bowling group. Through NAXF, once a year I go toWashington, D.C., to lobby for continued federal research funding. On July 25-29, the Fragile X conference will be in Miami, and I am co-chair for recruiting volunteers. And I advocate for all special-needs adults.
Q: What are your goals?
A: My short-term goal is to recruit 50 volunteers for the NAFX convention. My ongoing goal is to spread the word about Fragile X syndrome so that more of the population gets tested. When Dan was born 34 years ago, no accurate blood tests existed; today they do. This means families should be tested. My grandmother, mother, aunt and I were all silent carriers.
Q: What challenges do you face?
A: Dan doesn't have the ability to live on his own yet. He is very good in a routine, but not in handling change or in always reacting appropriately. Right now, he still needs an advocate in his corner. But he continues to grow and his abilities continue to increase, so I'm optimistic.
Q: What has Dan accomplished?
A: Since he was 17, Dan has worked at McDonald's, first in Chicago and now in Boca. He tried several jobs initially, but he loved McDonald's. Actually, he's so well trained he can work at any McDonald's in the world. The supervisor in Boca said, "I thought I'd give him a chance, but I never expected him to be so good."
Q: What have you personally accomplished?
A: I've just reissued as an eBook "The Broken Toy: A Story of a Fragile X Syndrome Child." It's to help parents of special-needs children, starting from childhood and going into adulthood. [Visit] http://www.brokentoybook.com.
Q: What does your organization need?
A: Increased awareness of Fragile X and the progress being made to find a cure.
For more information, please visit http://www.fragilex.org.
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