What does it feel like to have Fragile X? What is it like to be a mom? Meet some of our families. Click on an image to meet a child. If you would like to donate in honor of a special child, we will let the family know. Thank you!!

Family Stories

  • Turning 22 with Fragile X Syndrome – What’s Next?
    Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by this transition. Our son, Ryan, had been attending a residential school, New England Center for Children, for the .....
  • Rolling Stone Magazine: Luke’s Best Chance: One Man’s Fight for His Autistic Son
    Rolling Stone Magazine published a powerful article by award-winning writer, Paul Solotaroff, featuring his son, Luke. Luke is 17 years old and has fragile X syndrome. What will happen when Luke becomes an adult and no longer has a right to schooling?   .....
  • FRAXA announces three new board membersFRAXA Announces 3 New Board Members
    FRAXA, the world’s leading organization fully committed to finding a cure for fragile X syndrome, has announced Theodore G. Coutilish, Kathan Pierce, and Jessica Haugan have joined its Board of Directors. Kathan Pierce most recently held senior finance .....
  • FRAXA volunteer Emily FluetResources for Families: Fragile X – A to Z and Medication Guide
    FRAXA Research Foundation is fortunate to attract volunteers and interns from universities far and wide. FRAXA has just four staff on the payroll (three of whom are part time), to keep expenses low and devote your donations to Fragile X research. That also .....
  • Simon is weird and wonderful. He's friendly and curious and talks non-stop. He's an athlete and an artist. He's unbelievably generous and crazy stubborn. He often repeats sentences. When his mom reprimands him for something, he'll say, "Well I have Fragile X." His next sentence is often, "I want to get rid of it." Sometimes he says, "It's your fault."Simon is Weird and Wonderful
    “Well, I have Fragile X” Simon is weird and wonderful. He’s friendly and curious and talks non-stop. He’s an athlete and an artist. He’s unbelievably generous and crazy stubborn. He often repeats sentences. When his mom .....
  • Elizabeth Higgins ClarkThis Is My Brother, speech by Elizabeth Clark at FRAXA’s Fall X Ball
    In a heartfelt, humorous and insightful speech, Elizabeth Higgins Clark imparts the inspiration and love she has received from her brother, David, who has Fragile X Syndrome.  Fragile X is the most common form of genetically transferred intellectual .....
  • Darren’s Smile
    Darren’s Smile – This is a very difficult post to write because it is about a son, Darren, who has passed away. Darren’s dad has written a memoir – a beautiful tribute to his son. Darren had Fragile X syndrome. He lived a rich life and was very .....