To my friends in the Fragile X community:

As you will read in the current issue of the Foundation Quarterly the state of affairs in our nation’s capitol is……unsettled. Drastic cuts loom and unless we stand up for what matters to us, our programs could disappear. Whether its you that’s impacted, your child, your parent, grandparent, sibling, relative, patient, student, friend or neighbor, you have a story to tell. And telling that story really-does-make-a-difference.

Sending letters works too, but taking the time to travel to DC to educate your members of Congress about Fragile X and our priorities is powerful; there’s no denying it. We don’t invite FX into our lives and there’s only so much we can do to push-back. And Advocacy Day is an opportunity to do just that.

Stand up. Step forward. Join us in Washington. Tell your story. Make a Difference! It will change your life, we promise.

Jeffrey Cohen | Director of Govt Affairs & Advocacy
National Fragile X Foundation

A few words from some Fragile X advocates:

The experience was simply wonderful…..our minds and hearts feel great! This was part of our healing and acceptance of Fragile X …. I would strongly recommend Advocacy Day to everyone. After the first meeting, the jitters were gone and it was smooth sailing”

We had a great day. We had a great response. It was an incredible experience and our family team is looking forward to our next Advocacy Day!

The opportunity is empowering…Families get to help solve the problem and members of Congress are reminded that those who elected them have specific needs and requests

I did not start with interest in government, just a mission to help my kids with Fragile X. I don’t even read the paper daily (I do watch or listen to the news) so the idea of going to Washington to speak to my Representative and Senators did intimidate me. The first year I was the only one from my state and I was paired with another solo advocate. We encouraged each other and helped when one of us lost our train of thought or needed to make a point. Our feet hurt after visiting all of the offices from both states. The next year we traveled together and both had others to help from our states which was great! I saw my Congressman on our flight to DC and made another great connection. Recently, our family met our members of Congress during the 350th anniversary celebration of our town. I wasn’t a pest; I just mentioned that I would be visiting in the spring to talk about Fragile X and told them how my son was doing. I also sent an update with a picture of Patrick and Kelley and mentioned that I looked forward to seeing them again. This past Advocacy Day I was proud that our daughter attended. She was quiet during most of the meetings but when she spoke she told her very personal story of having a sibling with FX and what it means to help her brother. I am looking forward to my sixth year attending AD. I encourage all of you to attend. It does matter that voters, common citizens and families go to Washington to tell their stories!

Advocacy Day is March 6-7, 2012. You can register and find more information at