Brighton's Love of Horses
Hi, we're Marc and Rachael. We have three children ages 11, 5 and 1... one boy and two girls. They all have Fragile X syndrome. Our oldest, our son, embraces his uniqueness and gets so [...]
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 [...]
Longitudinal Outcomes & Neuroimaging of FXS…
Longitudinal Outcomes and Neuroimaging of Fragile X Syndrome + Neurodevelopmental Profiles of Infants and Preschool Age Children with Fragile X Syndrome By Aubrey Rho, Stanford University School of Medicine Mentors: Amy Lightbody, PhD and Allan [...]
Fragile X Premutation and FXPOI
Analysis of Ovaries from FMR1 CGG Repeat Mice Research Summary: National Fragile X Foundation – Translational Research Grant Renate Hukema PhD - $50,000 Erasmus MC, The Netherlands SPECIFIC AIMS: The CGG repeat sequence located in [...]
Parent Mediated Language Intervention for Young Children with FXS: A Pilot Efficacy Study
Research Summary: National Fragile X Foundation – Translational Research Grant Len Abbeduto PhD - $75,000 University of Wisconsin – UC Davis M.I.N.D. Institute SPECIFIC AIMS: The proposed project is designed to gather preliminary data on [...]
NIH Issues Research Plan on Fragile X Syndrome and Associated Disorders
The National Institutes of Health has developed a research plan to advance the understanding of Fragile X syndrome and its associated conditions, Fragile X-associated tremor/ataxia syndrome and Fragile X-associated primary ovarian insufficiency. Fragile X syndrome [...]
A Double-Blind Randomized Controlled Cross Over Trial of Minocycline in Children with Fragile X Syndrome
Research Summary: National Fragile X Foundation – Translational Research Grant Randi Hagerman MD - $100,000 UC Davis MIND Institute This project will study the efficacy of the antibiotic drug minocycline for children ages 4 to [...]