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.

   Q: How did you choose this organization?

    A: NFXF 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 NFXF, once a year I             go to Washington, 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                  NFXF 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 Raton. 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 Raton 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.

       Originally published in the South Florida Sun-Sentinel

                         May 18,  2012