- Fragile X-associated Disorders
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7:00 AM Southwest Airlines Flight 989 to BWI. Seat 12C, exit row. Less than 30 days until the New Year and less than 15 until Congress is scheduled to go on vacation. The so-called fiscal cliff looms, compromise remains elusive and I’m headed to DC to meet with some friends in Congress to brainstorm, consider the implications of the just concluded election and continue to develop a strategy for Advocacy Day 2013 and beyond.
There are a couple of things you can do right now. Nearly everyone agrees that Congress needs to get a deal done before the end of the year. They intentionally imposed upon themselves drastic across-the board-cuts, that none of them could live with to force themselves to reach a more measured compromise. Those cuts are poised to take effect on January 1 and so the time for that measured compromise is yesterday.
The 535 members of Congress need to hear from the 300 million of us that we’d like them to find that compromise and stop playin’ chicken with our lives. So we’ve prepared a letter you can send that makes this point and mentions Fragile X. Fill in your info, review the letter, then send it today if you can. Then forward the link far and wide. The more the better. Those who have already sent their letters have reported some pretty good feedback from both sides of the aisle. That’s your first assignment.
Next, think about joining us for NFXF Advocacy Day. This will be the 10th installment of this annual trek. Much has changed in those ten years: doubling of NIH research dollars spent on FX yearly, the creation of the National Center on Birth Defects and Developmental Disabilities at CDC, the creation of a funded national fragile x public health program, government funding to support the now 26 clinic strong Fragile X Clinical and Research Consortium, funding of FX research by the Department of Defense and most importantly the fruit that is growing on those 10 year old trees we planted back in 2004.
That’s right, the clinical trials of targeted drugs which could reverse many of the neurobiological disruptions in the brain caused by alterations in normal levels of FMRP are truly the fruits of your labor.
But we’re not to the finish line yet. Now is the time to pick up the pace, to devote more resources to the quest. And yet, there’s the economy, the debt, the deficit, spending cuts, sequestration, the cliff, and on and on. What’s an FX advocate to do? As you probably guessed I’m going to ask you once again to join us on Advocacy Day. Consider it a holiday gift to the member(s) of your family impacted by FX; one that will pay dividends for many years to come. I hope to see you in DC!
Just about ready to land now. Seat belts on, tray tables up and power down. From all of us at the NFXF, and from my family to yours, we wish you peace and progress in the New Year.