The NFXF Blog
National Call-In Day in Support of the ABLE Act , Wednesday April 25, 2012
The National Fragile X Foundation is co-hosting National Achieving a Better Life Experience (ABLE) Act Call-In Day on Wednesday, April 25, along with Autism Speaks, National Down Syndrome Society, Muscular Dystrophy Association, NDSC, and several [...]
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. [...]
UI Opened the State's First Fragile X Clinic in 2010
Logan Edwards Fragile X — a rare chromosomal mutation — is difficult to recognize, but those advocating for its treatment say they hope the University of Iowa Hospitals and Clinics will bring better local [...]
JS Genetics Announce Launch of its Bloodless, Cheek Swab Test for Fragile X Syndrome
New Haven Conn., April 18, 2012 /PRNewswire/ -- JS Genetics announces the launch of XCAT-FX, its propitiatory buccal swab test for the detection of Fragile X syndrome. Fragile X syndrome is the most common cause [...]
Fragile X Syndrome Can Be Reversed in Adult Mouse Brain
Robert Miller Executive Director National Fragile X Foundation Readers should know that the researchers involved with this study, and their affiliated institutions and companies, are highly regarded and well-known in the Fragile X [...]
A Letter to Implement the Affordable Care Act
As part of our continuing public policy activities, we have been monitoring the incremental implementation of the Affordable Care Act (ACA). Many of you know that the Act is currently under review by the Supreme [...]
Autism Awareness Day: Do Genes Cause Autism? Without a Doubt!
Robert Miller National Fragile X Foundation Member of the FXCRC Steering Committee On this World Autism Awareness Day it is important to remember that one of the significant causes of autism is already [...]
Fragile X got Talent
Calling all performers with Fragile X: Let’s spice things up in Miami and have some fun with a homegrown Fragile X Talent Show! Do you (or your loved one) sing, play an instrument, dance, act, [...]
Meet our new Development Manager: Julie Stutzman
Julie Stutzman is the new Development Manager at the National Fragile X Foundation. If you have any questions regarding fundraisers or grants which benefit the Foundation, you can reach Julie at fundraisers@fragilex.org. I am thrilled [...]
Across my Desk: Females and FXTAS
Liane Abrams, MS, CGC Each day I receive calls and emails from parents, relatives and individuals affected by Fragile X-associated Disorders. Many of the emails and calls include questions about FXTAS (Fragile X-associated tremor ataxia [...]
International Fragile X Conference Updates
Curious about what's going to be at the conference? Here are a few highlights: Keynote presentations by Elizabeth Berry-Kravis MD PhD, Kim Huber PhD, , Stephen Warren PhD, and Rick Guidotti of Positive Exposure [...]
How To Choose an App
Sarah "Mouse" Scharfenaker There are millions of great apps out there. Here are some guidelines as to how to pick 'em. What is your goal in using a specific app? Reinforcing/practicing concepts from therapies? Keep [...]