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Fun & Fundraising!

A local business has offered to host a fundraising event for the National Fragile X Foundation! Eric and I will be going (YAY for grown up time!) and we’d LOVE to see some other families and friends there too. 25% of the proceeds will benefit the NFXF! A lifting magnet is a special kind . . . » Continue reading

Advocacy Day - 2013

MA and ME advocates with Sen. Elizabeth Warren (D-MA)

On March 5th and 6th almost 200 advocates from across the country descended upon Washington, D.C. to advocate on behalf of continued funding of fragile X research and the passage of several pieces of disability related legislation. We were excited to accompany several returning advocates, Ed Hanrahan (Mashpee), Denise Devine (Hadley), Kelley Devine (Hadley) . . . » 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

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!

Top 10 Things a Teacher Should Know About Fragile X Syndrome

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

What is #GivingTuesday?

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