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
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
Today is the final day for registering for National Fragile X Advocacy Day March 4 & 5 2014! National Fragile X Advocacy Day is an annual event organized by the National Fragile X Foundation. We encourage you to attend to let your voice be heard by your Senators & Representative at a time when the federal budget for 2015 is being discussed…. . . . » Continue reading
On Sunday, March 16, 2014 at 2:00 PM we will be hosting our inaugural business meeting. If you are interested in attending please contact via an email to EasternMA@fragilex.org to RSVP prior to March 7.
Topics to be discussed include:
The creation of a Strategic Plan to guide the group over the coming year. . . . » 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