How have we helped you?
How has the NFXF helped you and your family over the years? As we close out our 30th year of service to families, we'd like to share pictures and statements of how we've helped you [...]
Quick Survey: Treatments for Problem Behaviors in FXS
Please help the NFXF and the Fragile X clinics gather the information necessary to support clinical trials in Fragile X syndrome (FXS) across the country. These studies are designed to find out if medicines commonly [...]
Xpressing Gratitude! We Need Your Videos!
The NFXF is always hard at work doing everything we can to help the Fragile X community. You know that and we do, too! But do you know who's really making this all happen? That’s [...]
Invite Your Members of Congress to a Fragile X Roundtable Discussion
On May 17th, Representatives Gregg Harper and Eliot Engel will be hosting a Roundtable discussion on Fragile X and autism for members of Congress and their staff. Please send an email today to invite your Members of Congress to this important event.
Let the Senate Know We Need Fragile X Funding!
The "letter to appropriators" urging support for Fragile X funding has now been presented in the Senate by our FX champions, Senators Stabenow and Isakson. So far, none of their colleagues have signed on, but [...]
Let Congress Know We Want Fragile X Research!
It’s Advocacy Time Again—Fragile X Needs Your Help Today! As you all know, nearly 200 Fragile X advocates gathered in Washington, DC on March 6 to brave the snow storm that wasn’t and then hand-carry [...]
Thankful for… Image Request
Thanksgiving is around the corner and we'd like to know what you are thankful for? Share your favorite family photo along with what your family is thankful for and we will be compiling these into [...]
Pictures of Fragile X Fathers
Father's day is right around the corner and we're working on a tribute to some of the amazing Fragile X Dads out there. We would like you to share some pictures of your dad or [...]
A Mother's Touch image request
Mother’s Day is fast approaching and this year we’re focusing on a Mother’s Touch. We'd like people to share an image they may have of someone affected by a Fragile X-associated disorder and their mom. [...]
URGENT: National Institutes of Health call for Update to Fragile X Research Plan
The NIH has extended the deadline to March 16, 2012. The National Institutes of Health (NIH) has asked the National Fragile X Foundation to help organize feedback regarding the aims and future direction of [...]
How Do You Say I Love You?
We have a special little project just around the corner and need your help! We all show and say I love you in many different ways - We want to see how you and your [...]
What are you thankful for?
We are working on a project and we would like to know what you are thankful for. Please complete the form below by Wednesday, November 9, 2011.
These Fragile X groups want to know more about you
Several of our Fragile X LINKS Groups have short online surveys for local families to take so that they can stay up to date with your needs and interests. Your feedback is important [...]
Share about a transition point in your life
The National Fragile X Foundation is looking people to share a first-person story from parents/family members point of view facing specific transition points. Submissions will be considered for inclusion into the Fragile X Quarterly and other future foundation communications.