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Business Meeting on June 21, 2014

On Saturday, June 21, 2014 at 3:00 p.m. we will be hosting our next business meeting in Cambridge, MA. If you are interested in attending please contact via an email to EasternMA@fragilex.org to RSVP prior to June 16.

Topics to be discussed include:

The creation of a Strategic Plan to guide the group over . . . » Continue reading

Meeting Minutes from March 16, 2014

Location: Cambridge, MA

Date: Sunday, March 16, 2014 2:00 – 4:30 p.m.

Attendees: Melissa Welin, Eric Welin, Aimee Freedman, Emily Hanke, Christy Avlasov, Kate Leonard

Minutes:

Introductions Announcements New co-leader is Aimee Freedman New Regional Leader is Paula Fasciano (all northeast groups report to her). Name changed from LINKS Group to CSN, explanation of new branding . . . » Continue reading

Advocacy Day Round-up **Action Requested!**

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

Improving Fragile X and Autism Related Clinical Trials.

Walter Kaufmann

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

Still Time to Register for National Fragile X Advocacy Day!

MA-Warren

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

Inaugural Business Meeting

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

Fragile X Family Event in Western, MA!

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 research opportunity!

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

USC Adolescent Language Study

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

A Grant for Traveling to Clinics

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!