Posted at February 13, 2013 | Categories : 2013 | 0 Comment

Helping FX and Yourself—A Two-for-One Special!

Jeffrey Cohen
Director of Government Affairs & Advocacy


Doing the right thing, making a difference, going the extra mile, digging deep. We all know what these phrases mean, we know they require a personal commitment of time and in many cases, dollars, and we all know the sense of satisfaction and well-being we get in return. Very often these acts are charitable, with the intention to help others in need. But sometimes we are presented with opportunities to combine altruism and self-interest in one neat little package. What a great way to make both the outside world and your personal world a better world. Kind of like a two-for-one special, isn’t it?

Well, opportunities like this don’t come around all that often, so lean in close and I’ll share a secret phrase: the National Fragile X Foundation’s public policy and advocacy efforts. Yup, advocacy and public policy. Advocacy Day is coming up in Washington, DC in a few weeks, so time is running a bit short to make that trip (not to mention we’ve got about 180 folks already signed up and no hotel rooms left). But in those two days, our advocates will help make the world a better place for their families—and yours. First, they’ll create greater awareness of FX among the 535 Members of Congress who control the gazillion-dollar federal budget. From greater awareness will come not only greater understanding but also increased funding for research and services.

Self Advocates at NFXFAD with Congressman Gregg Harper

All of us who have been around Fragile X for a while know it isn’t just something that happens to you, tough luck, now go mope in the corner. You can push back and turn it into something you can do something about. Advocates who go to DC have that figured out. Sure, it takes two days out of your week (March 5-6) and you’ll have to go out-of-pocket to get there, but it will change your world and the world of so many others. If this sounds like something you’re interested in you’d have to register by Friday, February 15 and find a hotel room on your own.

But there are other ways to support this effort, too. Join the Advocates List, respond to email Action Alerts, get to know your Members of Congress by corresponding and visiting with them in their home offices. Help the NFXF promote Advocacy Day in your local community. There’s no registration fee to attend an NFXF Advocacy Day. Everything we strive to accomplish on NFXFAD is solidly in line with the foundation’s mission, an effort we undertake for the good of the entire community.

Finally, yes, there are costs involved with all these activities. So even if you can’t join us this year in DC, you can still help. You’ll soon be receiving a mailer describing the NFXF’s annual public policy fundraising campaign. Even with all of the pressures to trim and cut federal expenditures, nobody in the private sector comes close to funding the amount of medical research that the federal government does—and we must make sure that continues. So dig deep, please! Help your family and the entire community impacted by FX by supporting the NFXF’s public policy and advocacy activities. This is a limited time offer and a true “two-for-one special” you don’t want to pass up.