The NFXF Blog
Focused on his future
We found out our oldest child Jacob had Fragile X syndrome 3 days after his 3rd birthday in October of 2003. Shortly afterward we discovered his little sister Samantha had the full mutation too... she [...]
A Special Sibling Bond
Josh is a 17 year old, happy and charming young man... one of the kindest and most compassionate teenagers I have ever known. He is severely affected with Fragile X syndrome and Autism and I [...]
Darienne's Passions: Dance and Cheerleading
"Nothing great in the world has been accomplished without passion" ~ Hegel Darienne has a passion for dance. She began dancing at 4 years old and danced for 15 years, taking classes in ballet, tap, [...]
Darienne’s Passions: Dance and Cheerleading
"Nothing great in the world has been accomplished without passion" ~ Hegel Darienne has a passion for dance. She began dancing at 4 years old and danced for 15 years, taking classes in ballet, tap, [...]
The Team Fragile X Slot Car
We have a friend in Italy named Richard Bennett who participates in slot car racing for Team Fragile X. Check out the sweet FX custom-designed Lancia Stratos. An earlier design for this car was used [...]
Cross-country Bike Ride to Raise Awareness for Fragile X Syndrome and Multiple Sclerosis
Joe Wainwright and Eric Sheerin share a bond and now a cause. The Pinehurst, NC, recent college graduates are leaving on a cross-country bike ride June 1 to raise awareness and money for the National [...]
Fragile, Not Broken Walk for Knowledge
On May 7th, 2011 over 400 people celebrated the 5th Annual Fragile, Not Broken Walk for Knowledge. It poured rained as volunteers from the FX Resource Center of Missouri set up for the event but [...]
The Fabric of Fragile X
Facebook, Twitter, email, blogs, conferences, seminars, group barbecues and long phone conversations. What do these have to do with each other and with Fragile X? They are all places where one can go, or tools [...]
Dr. Craig Erickson Discusses the Drug Acamprosate for the Treatment of FXS
Acamprosate, a drug used to treat alcohol abuse, improves communication and social behaviors associated with a common form of autism. IU autism researcher Craig Erickson, MD, will discuss his ongoing study of acamprosate and Fragile [...]
Research Study for Premutation Males Ages 18-50
The University of California, Davis MIND Institute is currently recruiting men with the Fragile X premutation between the ages of 18-50 to participate in a research study focusing on emotion and memory. Participation includes 2 [...]
Advocacy Action Alert: Write Your Legislators about TEAM
Here's your chance to step-up and take action. Representative Gregg Harper has already introduced the TEAM Act package of bills for his son and for all of our family members and friends impacted by FX. [...]
Take the National IDEA Survey!
The Individuals with Disabilities Education Act (IDEA) will be reauthorized within the next year or two. To prepare for the reauthorization of IDEA, several disability organizations are sponsoring a survey that seeks to answer this [...]