Good news! The 2012 federal budget process has finally concluded, and Fragile X has emerged from the process with federal funding and programs intact. This was only because of the relationships we’ve nurtured and grown since the first Fragile X Advocacy Day in 2004, and because we continued to make the case for our cause with Members of Congress.

Next year is certain to present equal or greater challenges, and that’s why if you’ve attended Advocacy Day before you must return! And if you haven’t attended before, 2012 is the year to start. March 6-7, 2012 is the date; Washington DC is the place. Register Now at


The consolidation of FX programs which had been proposed and which would have resulted in the elimination of the line item funding restricted to FX at the CDC NCBDDD has been DEFEATED (it didn’t pass). Therefore the FX line item and the FX public health program at the CDC have survived. In addition, our friends in the Senate mandated that if such a consolidation is considered again next year, it must first be demonstrated that such a move would benefit and not harm the disability community. This result was achieved by us coming together with the other recipients of similar line item funding from the CDC, reaching out to Senator Harkin and others on Appropriations and strongly opposing such consolidation. The language in the final bill passed reads:

The conferees have rejected the consolidation proposed in the fiscal year 2012 budget for disability initiatives in the National Center on Birth Defects and Developmental Disabilities (NCBDDD). The conferees direct that any new consolidation put forward by the administration be accompanied by an assessment of the needs of people with disabilities that includes the categories of disabilities currently served, validates the value of such a consolidation, considers the input of stakeholders, and establishes the  basis for any proposed efficiencies and commonalities.

With regard to the funding for the FX program at the CDC, we were successful in securing LEVEL FUNDING from 2011 to 2012. At its highest level this amount was just over $1.9 million. Over the last 2-3 years, although we have avoided any specific cuts to this program, there have been small across-the-board cuts of 1-2%, and the same will occur again for 2012. This will result in a funding level for the program in 2012 of about $1.7 million.

We were also successful in securing the directive appropriations language we sought, which pertains to the FX program at the CDC. This language is:

Fragile X-Associated Disorders (FXD)—The Committee encourages CDC to focus its efforts on identifying ongoing needs, effective treatments and positive outcomes for families through epidemiological research, surveillance, screening and the promotion of early interventions and supports for individuals living with FXD. The Committee commends CDC for its efforts to establish the Fragile X Clinical & Research Consortium. The Committee encourages CDC to work with the National Institute of Child Health and Human Development to consolidate and coordinate Federal investments in data collection efforts related to Fragile X. Additionally, the Committee encourages CDC to focus on improving access to clinical services for underserved populations and to effectively disseminate information on promising practices related to diagnosis and early intervention to healthcare entities working with underserved populations.


Congress does not mandate a specific amount of money for FX but rather, provides only directive appropriations language. For 2012 we were also successful is securing the directive appropriations language we requested. The language reads:

Fragile X—The Committee urges NIH, working with NICHD, the Fragile X Clinical Research Consortium and the private research sector, to fully implement the NIH Research Plan on Fragile X Syndrome and Associated Disorders. NIH is encouraged to support translational research that shows significant promise of safer and more effective treatments for the various Fragile X-associated Disorders. The Committee requests an update in the fiscal year 2013 congressional budget justification regarding the status of federally funded registry initiatives and how they might be coordinated.


We were also once again successful in keeping FX on the limited list of approved conditions for which research is funded through the Department of Defense-Peer Reviewed Medical Research Program (DOD PRMRP). This is a $50 million appropriation, from which research is funded (only) for the congressionally designated conditions. The language we secured is as follows:


The conference agreement provides $50,000,000 for a Peer-Reviewed Medical Research Program. The conferees direct the Secretary of Defense, in conjunction with the Service Surgeons General, to select medical research projects of clear scientific merit and direct relevance to military health. Research areas considered under this funding are restricted to: arthritis, composite tissue transplantation, drug abuse, dystonia, epilepsy, food allergies, Fragile X syndrome, hereditary angioedema, inflammatory bowel disease, interstitial cystitis, lupus, malaria, nanomedicine for drug delivery science, neuroblastoma, osteoporosis and related bone disease, Paget’s disease, polycystic kidney disease, post-traumatic osteoarthritis, scleroderma, tinnitus, and tuberculosis. The conferees emphasize that the additional funding provided under the Peer-Reviewed Medical Research Program shall be devoted only to the purposes listed above.

These results, combined with the awarding of the new four-year FX Clinical and Research Consortium grant should be taken as great a success. For fiscal year 2013 (Advocacy Day 2012) we will work to maintain and grow these programs and take advantage of new opportunities. Of note is a new program funded by Congress at the NIH known as the “National Center for Advancing Translational Sciences.” The relevant language is:

The National Center for Advancing Translational Sciences (NCATS) will study steps in the therapeutics development and implementation process, consult with experts in academia and the biotechnology and pharmaceutical industries to identify bottlenecks in the processes that are amenable to re-engineering, and develop new technologies and innovative methods for streamlining the processes. In order to evaluate these innovations and new approaches, NCATS will undertake targeted therapeutics development and implementation projects. In all of these efforts, the conferees expect that NCATS will complement, not compete with, the efforts of the private sector.

We are hopeful the funds from this new center will be made available to FX projects, and we will work to make this happen.

On the human services front, the ABLE and Seclusion and Restraint acts have been reintroduced in Congress, and we will work to secure their passage in 2012. Also, the TEAM Acts remain pending, and we will likewise work to secure passage of one or more of these acts. In addition we will continue participation in the Collaboration to Promote Self Determination (CPSD) and work to secure passage of legislative and regulatory efforts aimed at creating ever greater opportunities for adults with FX to live included, supported, independent and productive lives.

Don’t stand on the sidelines; don’t sit this one out. Step Forward and join us on Advocacy Day. Register now at