For the past 4 years Eric & I have been attending the National Fragile X Foundation’s annual Advocacy Day in Washington, DC. This year our son, Caleb (9, FXS), joined the Massachusetts delegation for the first time. Also in attendance from Massachusetts were Denise & Kelley Devine and Kathleen Quinn. Ed Hanrahan, a long . . . » Continue reading
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 Dr. Walter Kaufmann, the co-director of the Fragile X Syndrome Program at Boston Children’s Hospital has written a terrific article, “Autism clinical trials are ripe for improvement.” He references the arbaclofen trials conducted by Seaside Therapeutics and the disappointment over the termination of the open-label fragile X trials. He raises three key issues with . . . » Continue reading Add this to your calendar!! The Fragile X Resource Center of Western Massachusetts will be hosting a fragile X family picnic on Sunday, June 9, 2013! The event will be held at Look Park in Northampton, MA. They ask that you bring something to grill and a dessert or side dish to share. Contact . . . » Continue reading Boston Children’s Hospital recently became a site for a Novartis drug trial testing an mGluR5 antagonist in adults. Additionally, a Novartis trial of the same drug in adolescents is actively recruiting at BCH. The adult study is for individuals with fragile X ages 18-45, while the adolescent study is for 12-18 year olds. The . . . » Continue reading The Neurodevelopmental Disorders Lab at the University of South Carolina has a newly-funded research study examining how language abilities impact the success of adolescents with fragile X syndrome after graduating high school and entering into adulthood. They are currently recruiting adolescent males who are 14-22 years of age with the full mutation of fragile . . . » Continue reading Planning a trip to a Fragile X Clinic? Ask your clinic’s coordinator about the Fly With Me Fund grant which helps with travel and lodging! Students with Fragile X Syndrome can often be like the proverbial girl with the curl in the middle of her forehead – when they’re good, they’re very, very good, and when they are bad they are horrid. Knowing these 10 things will help bring out the good and minimize the horrid! The #1 . . . » Continue reading Thanksgiving is right around the corner, and for most people that means spending time with family while enjoying great meals, good times, and a big helping of gratitude. Then comes Black Friday, the day when stores nationwide have blowout sales and people line up around the block for the best deals. After that . . . » Continue reading The LINKS Support Network is a wonderful way to get involved in the Fragile X community on a local level, to meet new families, share experiences, work together to raise awareness, advocate, fund raise, build friendships and most importantly, be a part of the support for families just like yours. Visit our LINKS . . . » Continue reading
Here in the Fragile X world we spend a lot of time parsing mutations, CGG repeat numbers and trying to define Fragile X. From a medical and scientific point of view, that effort is necessary so that clinicians and researchers can communicate with each other in a descriptive and . . . » Continue reading |
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