How it All Began

WITH A DIAGNOSIS. The X Family Foundation was founded in 2011. Although it is a new non-profit foundation, the idea for the foundation came to its founder, Rosa Perez, 7 years ago, about a year after she got “the call” from the doctor’s office with a diagnosis: Fragile X Syndrome. So many of us can remember that phone call. Where we were and what we were doing when we received the news. Once the fog lifted for Rosa, she came to realize that there was a greater purpose for this. Rosa drew strength from her difficulties and, with her family standing by her side and supporting her, decided that she would be an advocate, not only for her son, William, but for all the other children and families affected by Fragile X Syndrome.

An initial foundation was started under the name of the Florida Fragile X Families Foundation, but when Rosa’s goals could not be accomplished through that foundation, again with her family by her side, she started The X Family Foundation, which now consists of some of the same original officers and directors as the previous foundation, but with a renewed purpose of directly assisting individual families as well as the new Fragile X Clinic at the University of Miami in Miami, Florida.