The 2012 federal budget remains an unsettled matter. The 2011 fiscal year ends on 9/30 and 2012 begins on 10/1. Under “normal” circumstances the 2012 budget (that we began advocating for on Advocacy Day last March) would be finalized by now but things in Washington, DC are anything but “normal”.

The budget is a collaboration between the President, House and Senate. The President put forth a budget in February. The House and Senate have been delayed by debt reduction and debt limit matters.

Fragile X programming and funding can be found in the Defense budget and in the Labor, Health and Human Services and Education (L-HHS-E) budget. Below is the Fragile X news that came out of the budgets, accompanied with a few excerpts.

The Good News – Funding from 2012 Defense Budget

The 2012 Defense Budget has once again allocated funding for the Peer Reviewed Medical Research Program and Fragile X has once again (3rd year in a row) made the list of medical conditions that will receive research funding.

Peer Reviewed Medical Research Program. — The Committee recommends $50,000,000 for a Peer Reviewed Medical Research Pro gram. The Committee directs 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: amyotrophic lateral sclerosis, Alzheimer’s, arthritis, autism, composite tissue transplantation, drug abuse, epilepsy, food allergies, Fragile X syndrome, gulf war illness, hemorrhage and hemostasi research, hereditary angioedema, inflammatory bowel disease, interstitial cystitis, kidney cancer, lupus, melanoma, mesothelioma, multiple sclerosis, nanomedicine for drug delivery science, neuroblastoma, neurofibromatosis, orthopedic extremity trauma research, osteoporosis and related bone disease, Paget’s disease, Parkinson’s, polycystic kidney disease, post-traumatic osteoarthritis, scleroderma, tinnitus, tuberculosis, tuberous sclerosis complex, and vision research. The Committee emphasizes that the additional funding provided under the Peer Reviewed Medical Research Program shall be devoted only to the purposes listed above.

More Good News – Senate approps com adopts our 2012 budget requests made last advocacy day

Although the House has indicated that it will not pass a L-HHS-E budget and will opt for an Omnibus Bill for 2012, the Senate has passed its 2012 budget and the FX requests made on 2010 Advocacy Day were included verbatim. We now must work to assure that this language in included in the Omnibus Bill.

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.

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.

Also the Senate has adopted a position very favorable to FX concerning budget consolidation at the NCBDDD.

*See Table 1 below

What is Consolidation?

Historically The NCBDDD receives only specifically designated funding from Congress. Each year a specific amount of money is provided for a specific purpose (i.e. Fragile X) and the money can only be used for the designated purpose. There are currently approximately 20 different such funding lines. In the President’s budget it was proposed that all of these individual funding lines be consolidated into one funding line and the Center would then have the discretion to allocate dollars to the greatest identified need (rather than the specific condition attached to the funding). Under this model each of the conditions (like FX) that helped start the NCBDDD and continued to advocate for its funding each year, could see their programs eliminated. For this reason, and because we felt that the consolidation plan was not well thought out, the NFXF came together with groups representing the other medical conditions similarly effected and strongly advocated against consolidation. The Senate L-HHS-E budget passed adopted this position and rejected consolidation for 2012. The language from the Senate budget is below.

The Committee has rejected the consolidation proposed in the fiscal year 2012 budget for disability initiatives in the National Center on Birth Defects and Developmental Disabilities [NCBDDD] out of concern that the progress that has been made on behalf of people with disabilities would be lost in the proposed structure. Should the administration decide to put forward a similar request in fiscal year 2013, the Committee encourages CDC to ensure that it is  accompanied by a needs assessment 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.

More Good News – FXCRC Funding

The Fragile X Clinical Research Consortium (FXCRC) has been funded by CDC for another 4 years.

While overall government funding and funding for FX research and programming remain complicated of great concern, our advocacy efforts continue to pay dividends. Your help is needed now more than ever so please mark your calendar for Fragile X Advocacy Day 2012 on March 6-7. Registration information will be posted shortly on

Within the total provided, the following amounts are provided for the following categories of funding:
[In thousands of dollars]
Budget activity Fiscal year 2011
Fiscal year 2012
Craniofacial Malformation 1,809 ( 1 ) 1,809
Fetal Death 808 ( 1 ) 808
Fetal Alcohol Syndrome 9,891 ( 1 ) 9,891
Folic Acid 2,795 ( 1 ) 2,795
Infant Health 7,925 ( 1 ) 7,925
Autism 21,380 23,778 21,380
Limb Loss 2,836 ( 1 ) 2,836
Tourette Syndrome 1,701 ( 1 ) 1,701
Early Hearing Detection and Intervention 10,672 ( 1 ) 10,672
Muscular Dystrophy 5,865 ( 1 ) 5,865
Paralysis Resource Center 6,739 ( 1 ) 6,739
Attention Deficit Hyperactivity Disorder 1,718 ( 1 ) 1,718
Fragile X 1,684 ( 1 )
Spina Bifida 5,812 ( 1 ) 5,812
Congenital Heart Failure  — ( 1 ) 2,000
Hemophilia 16,670 ( 1 ) 16,670
Thallasemia 1,861 ( 1 ) 1,861
Table 1