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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

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 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

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

Save the Date! Tracy & Mouse are coming back to MA!

Fragile X Educational Conference

Hosted by: Fragile X LINKS Group of Eastern Massachusetts Fragile X Resource Center of Western Massachusetts

Saturday, April 14, 2012

Featuring Special Guest Speakers

Tracy Stackhouse and Mouse Scharfenaker from Developmental FX! Tracy and Mouse will be speaking about core issues in fragile X syndrome with a focus on understanding . . . » 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

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

Obama signs "Rosa's Law;" "mental retardation" out, "intellectual disability" in

It’s official! “Rosa’s Law” is now federal law after President Obama officially signed it today! It mandates that Federal statutes will no longer use the term “mental retardation” replacing the phrase with “intellectual disability.”

THE WHITE HOUSE Office of the Press Secretary

FOR IMMEDIATE RELEASE

October 5, 2010

Statement by the Press Secretary

On . . . » Continue reading

Mystic Aquarium for Families Affected by Autism Spectrum Disorders

Kind of short notice on this one, but it sounds like a great event for anyone in the CT area.

Mystic Aquarium for Families Affected by Autism Spectrum Disorders

Where: The Mystic Aquarium For Whom: Individuals and families affected by autism spectrum disorders When: October 6th 2010, Wednesday, from 6:00 p.m. to 9:00 . . . » Continue reading