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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

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

MA residents, can you write a letter for us?

Eric & I will be leaving for Washington D.C. on Monday, March 8th in order to participate in the National Fragile X Foundation’s annual Advocacy Day event. This will be our second year attending. If anyone would like to write letters for us to deliver we would love to be able to do so. . . . » Continue reading

Advocacy works!

We just received some fantastic news from Ed Hanrahan, one of the Massachusetts delegates to Washington, D.C. on Fragile X Advocacy Day!

Ed –

I wanted to let you know that I spoke with Congressman Keating about your visit and he has decided to join the Congressional Fragile X Caucus.



Fantastic job . . . » Continue reading

We're Back from Advocacy Day!

We had a fantastic time in Washington, D.C. acting as advocates on behalf of the National Fragile X Foundation! This was the first year that we participated and it was a amazing experience. This year the Massachusetts delegation consisted of Eric and Melissa Welin (hi!), Denise and Kelley Devine of the Fragile X Resource . . . » Continue reading

Action Request for Fragile X Families in Massachusetts!

We are excited to be representing the Fragile X LINKS Group of Eastern Massachusetts at the upcoming 2011 Advocacy Day in Washington, DC. We know that many of you wish you could also attend but here is a way you can still have an impact.

Please Write a Letter!

We will . . . » Continue reading