About Friends for Fragile X

People often ask “I’ve never heard of Fragile X before, so how is it possible it affects 1 in 130 females and 1 in 250 males?”  Let us tell you our story, and you’ll better understand why this virtually unknown, yet widespread genetic disorder touches over 1 million Americans, and millions more world-wide.   

For the record, no one in our family had ever heard of Fragile X or any of the associated disorders prior to April 2010.  While most of our physicians had heard of the condition, it was only a distant medical school memory and not something they had diagnosed, or seen in practices.  This is because it is estimated that 1 in 130 females and 1 in 250 males are simply “carriers” of the genetic condition and these individuals are not generally affected by their “carrier” status.  When the “carrier” status changes over family generations, the full mutation, or “Fragile X Syndrome” (FXS) can abruptly occur.

In April 2010, our son, Tyler was diagnosed with the full-mutation of FXS at 17 months of age.  A year prior, we noticed various symptoms that led us to believe he was not developing as a “normal” baby, and it was a frustrating year of misdiagnosis and treatments for other conditions before FXS was finally identified as the root cause for Tyler’s global developmental delays and other associated medical problems, including severe feeding problems, sleep disturbances and low muscle tone. 

Raising a child with intellectual disability (also known as mental retardation), is a life-long journey and one of both joy and sorrow.  We wish to share Tyler’s story as a conduit to raise money to help find a cure for FXS and also assist other families with FXS children that are in need.  Friends For Fragile X is a 501(c) (3) non-profit California corporation and donations are tax deductible.  Our personal family, including Tyler, will not directly benefit from your financial contributions, however, our Board of Directors will oversee your donations and allocate to research projects we support in our quest to find a cure, and to assist families of FXS children with financial need.

About Our Name

Physicians have told us that children with Fragile X Syndrome will not have the capacity to create, foster and grow friendships like normal children.  Through Friends for Fragile X, we are creating a large network of supporters, or “Friends,” in Tyler’s’ name to join us in our search for a cure.  We invite you to sign our guestbook and/or make a donation and join us in becoming a “Friend” in the search of a cure for Fragile X.