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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 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


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.

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!

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 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!