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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

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

Seaside Therapeutics & Roche Announce Alliance to Advance Treatments

Seaside Therapeutics of Cambridge, MA along with Hoffman-La Roche announced their landmark alliance today to advance treatment for fragile X syndrome and autism spectrum disorders. The National Fragile X Foundation shared the press release on their website earlier today and plan to add additional commentary later this afternoon. Be sure to stop in and . . . » Continue reading

Connecticut Fragile X Awareness Day

Connecticut Fragile X Awareness Day was September 13, 2011. Andy Selinger did an appearance to spread awareness.

. . . » Continue reading

National Fragile X Awareness Day!

Today, July 22nd, is the 12th annual National Fragile X Awareness Day!

If you haven’t already, please visit the Fragile X Awareness page and share it with your friends and family. We’ve shared our story and we hope you’ll share yours as well. The National Fragile X Foundation has also created a . . . » Continue reading

Advocacy Opportunity - The TEAM Act

From the NFXF’s Washington Team:

Dear Advocates and Friends of Fragile X

Here’s your chance to step-up and take action.

Representative Gregg Harper has already introduced the TEAM Act package of bills for his son and for all of our family members and friends impacted by FX. But for these bills to really stand . . . » Continue reading

Take the National IDEA Survey

The Individuals with Disabilities Education Act (IDEA) will be reauthorized within the next year or two.

To prepare for the reauthorization of IDEA, several disability organizations are sponsoring a survey that seeks to answer this question: “Are parents treated as equal partners in planning their children’s education?”

If you are the parent of a . . . » Continue reading

New Studies coming from Seaside Therapeutics.

For anyone who is interested, two Phase 3 Studies of STX209 for Social Withdrawal in Fragile X Syndrome will be starting soon. The initial study will cover ages 12 – 25 with a study covering ages 5-11 following. There will be 20 study sites, including one in Worcester, MA. The studies are not yet recruiting but we will . . . » Continue reading

Advocacy Day 2011

It is time to start planning for Advocacy Day! Advocacy Day is March 1st and 2nd in Washington, D.C. Eric and I will be attending for the first time and we would LOVE to be part of a large Massachusetts contingent!

So, who is coming to D.C. with . . . » Continue reading

Resource Library

I want to point out, in case you’ve missed it, that the National Fragile X Foundation has provided us with a number of books to share with you all. Please check out the Resource Library for a listing of our current volumes. Contact Eric or I if there is anything you’d like to borrow. . . . » Continue reading