The NFXF Blog
Health Care Reform’s Impact on People with Disabilities
We’ve all heard about the Affordable Care Act. (Often referred to as “Obamacare.”) What will it mean for individuals with Fragile X syndrome or their families? What about those with FXTAS or FXPOI? Will it [...]
Research: Study for Medication at University of Louisville
Kosair Charities Pediatric Clinical Research Unit at the University of Louisville Do you have Fragile X syndrome? Are you the parent or caregiver of a person with Fragile X syndrome, or know someone who [...]
Thank You, 2012 Fundraisers!
We hope your new year is off to a great start! This month we will take a moment to recognize the many individuals, families, students and LINKS groups who took it upon themselves to raise [...]
LINKS Gets Into Gear for the New Year!
2012 was the most active year ever in the LINKS Support Network program, with everything from monthly Saturday gatherings for coffee to statewide awareness walks dotting the calendar. In addition to actively participating at the International Conference, many LINKS groups held local educational conferences for families and professionals in their communities. We also saw a lot of growth in the LINKS network, with eight new groups forming and two groups changing leadership. All this activity helped us reach out to more families across the U.S. than ever before.
A Fond Farewell to the FX Community
My first Fragile X case was in graduate school in 1984. A young man, about to be married, had a brother with Fragile X syndrome, and he wanted genetic counseling prior to his wedding. The first rumblings of "transmitting males" were arising so we imparted on him a small risk to be some sort of carrier, with no symptoms, and to be at risk for grandchildren with FXS. Even then, that was pretty advanced stuff, straying from the usual X-linked inheritance that previously reassured unaffected males that they could not pass on the disorder.
Suburban Research Associates: Investigational Medicine RO4917523
Suburban Research Associates 107 Chesley Drive, Unit 4 Media,PA19063 (610) 891-9024 (610) 891-9699 fax www.suburbanresearch.com Dear Parent or Caregiver, We are currently seeking volunteers who have Fragile X syndrome to take part in a [...]
Autism Speaks Lists Fragile X Syndrome Research on its Top Ten Autism Research Advances of 2012
Autism Speaks, the world's largest autism advocacy organization, recently released it's Top Ten Autism Research Advances of 2012. Included in this list is Fragile X research, mainly two drug studies of Arbaclofen. This is a [...]
Opportunity from Novartis Pharmaceuticals
Novartis Pharmaceuticals Dear Friend of National Fragile X Foundation: We would like to inform you of clinical research studies to find out if a new investigational drug is safe and has beneficial effects in [...]
Published: Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X
The NFXF is pleased to see the recent publication of Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X in Pediatrics, the official Journal of the American Academy of Pediatrics.
Texas Walks Across the State!
Congratulations to the three Texas LINKS “pardners” for organizing their successful and fun Fragile X awareness walks on Saturday November 10th. Walkers of all ages participated in Houston, San Antonio and Dallas to raise money [...]
Seaside Therapeutics Harbor-C Trials
Seaside Therapeutics is studying the science of the brain and working to deliver treatments that improve the underlying causes of developmental disorders like Fragile X syndrome. Right now, Seaside is testing an investigational medicine called STX209 (arbaclofen) for individuals with Fragile X syndrome with social impairment. Thanks to the dedication and efforts of families, one of the clinical trials is almost complete.
Changing Minds: Advocates Reshape How We Think About Autism
Brandon Reynolds, the author of the article Changing Minds: Advocates Reshape How We Think About Autism which recently appeared in the SF Weekly, has a brother with Fragile X syndrome and has been a past contributor to the NFXF’s Foundation Quarterly. The article features quotes from our executive director, Robert Miller, FX expert and medical director at UC Davis’ MIND Institute, Randi Hagerman, and several FX parents.