- Fragile X-associated Disorders
- Treatment & Intervention
- Public Policy & Legislative Advocacy
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Here’s a question I often hear from families at election time: Which candidate(s) would be best for Fragile X?
First of all, the NFXF is a non-profit, so we are by law (as well as by good sense) prohibited from endorsing political candidates. That said, there is much at stake in every election, so it behooves everyone to learn as much as possible about where candidates and political parties stand on the issues that may have a direct bearing on their family.
Those issues represent an impressive list, when you lay it out: Medicare, Medicaid, the Affordable Care Act, Social Security, basic and clinical research and clinical trials by the NIH, CDC and DOD, passage of ABLE legislation and a seclusion and restraint bill, support for the Fragile X Clinical & Research Consortium, a pediatric research consortium bill, sub-minimum wages, services in public schools, inclusion, the ADA, the IDEA, FDA action on drugs in clinical trials, sequestration. All those issues directly affect Fragile X families, and most of them are influenced to one degree or other by what legislators decide on the 2013 and 2014 budgets.
Will tax cuts or tax increases help enhance the general health of the economy? What impact will the debt and deficit have on the availability of funding for matters dear to individuals and families living with FMRP and Fragile X-associated Disorders?
These are difficult questions to answer, but we do know this: this election will have consequences, and each of the issues mentioned above deserve our study in determining how we will vote.
So please consider these issues carefully and then definitely vote! No sitting this one out. And probably most important for us is that regardless of who our next president or your senators or congress-members will be, we as a community will face great challenges and opportunities. Whether that means getting to know a new administration and Congress or working with old friends, the critical point is that everything starts anew on November 7. (Yes, there remain many opportunities in a lame-duck Congress.)
Other big dates are January 21, 2013 when newly elected officials get sworn in, and March 5-6, 2013, when another NFXF Advocacy Day gives us all the opportunity to make a huge difference for our cause.
Many years ago during wartime our government plastered posters throughout the country featuring a picture of Uncle Sam with the slogan: “I Want YOU,” The pitch then was for volunteers to enlist in the Army. Today, We (the NFXF) Want YOU to join our corps of Fragile X Advocates! It may be the most important thing you do this year.
Just follow these three easy steps:
The FX world is changing right before our eyes in many exciting ways. The depth and breadth of FX research, programming, services and treatments will be impacted by decisions made in Congress in 2013. Don’t let your Members of Congress make these decisions without hearing from YOU!