Katie Clapp - An Inspiration

October 2004

Ordinarily, being a working mother is not an uncommon job. It becomes extraordinary when you turn this job into something different and you become the only employee of a non-profit organization called FRAXA Research Foundation whose primary purpose is to find a cure for Fragile X Syndrome. Katie Clapp is that employee and she is a co-founder of FRAXA. She works 60-hour weeks for FRAXA and has taken few vacations during the last ten years. Katie has been highly instrumental in increasing funding for Fragile X Syndrome Research, creating a means by which other parents of children with Fragile X can communicate with each other and lobbies for all children afflicted with Fragile X.

Fragile X Syndrome affects 90,000 Americans, is the leading inherited cause of mental impairment and the leading known cause of Autism. Fragile X affects about one in 4,000 boys and one in 8,000 girls of all ethnic groups. One in 250 women and one in 800 men carry Fragile X. Keep in mind, these are only estimates because it is also estimated the ninety percent of individuals with Fragile X are not correctly diagnosed. Children and adults with Fragile X usually have mental impairment and behavioral problems including extreme anxiety, hyperactivity and features of autism.

Katie's son, Andy, was first diagnosed with Fragile X twelve years ago. At that time, only five people in the entire world were researching the gene that causes Fragile X. Now, due largely in part to Katie's drive and to many other parents who have contributed to FRAXA, they've built the field to include Nobel Laureates, National Academy Scientists and Howard Hughes Medical Institute Investigators. The research field has grown to over 6,000 people in the research network.

I also have a child afflicted with Fragile X and wrote the following at a time when I was at my wits end, thought no one understood, no one cared, and everything was hopeless.

Alone

Alone I am nothing, I am but one, one of many.

Alone I am empty, with a heart that seeks empathy.

Alone there is only fear, displayed in the form of many tears.

Alone there is only darkness, there is nothing to take away the harshness.

Alone sorrow will consume me, alone is not where I want to be.

The list serve that FRAXA provides took away that emptiness and serves as my lifeline. As a working mother, you haven't faced challenges, experienced sorrow, or worked harder then when your work might one day cure your child. In Katie's own words, "Ever since my son was diagnosed, I haven't been able to stop thinking about what to do next to cure fragile X." Words cannot express my gratitude for Katie and all of her accomplishments in working towards a cure not only for her son, but also for all the sons and daughters of the world affected by Fragile X Syndrome.

October 5th of every year is National Fragile X Research Day. Visit fraxa.org to learn more about FRAXA Research Foundation.