Jeffrey Cohen
Director of Government Affairs & Advocacy

To the casual observer it may look like absolutely nothing is going on in Washington, DC but if your observation stopped there you’d be missing a lot. Like the quiet but game-changing ABLE Act that, thanks to continued pressure on members of Congress from the Fragile X and other communities is gaining sponsors every day. Legislators don’t like to bring a new bill up for a vote unless they’re pretty sure its going to pass. Getting members to co-sponsor is a good way to judge how many people will actually vote in favor of it when.

Be sure to check out the progress for the House and Senate and if you don’t see your members of Congress listed, please reach out to them and send a letter asking them to cosponsor.

There’s much more going on too. Seclusion and Restraint is a hot topic we’re watching, we’ve recently:

  • Participated in a two day meeting at NIH to update the Research Plan for Fragile X Associated Disorders
  • Met with Kathleen Sebelius, Director of Health and Human Services
  • Met with our Fragile X Team at CDC
  • Will soon be meeting with Thomas Frieden, Director of the CDC
  • Will soon be meeting with representatives from the Office of Management and Budget (OMB) to talk about the 2013 Budget and beyond.

Stay tuned, we’ve been busy.