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By Melissa, on March 17th, 2014
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
By Melissa, on March 12th, 2014
 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
By Melissa, on April 2nd, 2013
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
By Melissa, on April 2nd, 2013
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
By Melissa, on April 2nd, 2013
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
By Melissa, on December 5th, 2012
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!
By Melissa, on December 4th, 2012
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
By Melissa, on November 8th, 2012
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
By Melissa, on November 7th, 2012
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
By Melissa, on November 6th, 2012
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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