Fragile X Research at the DOD

Thanks to the hard work of NFXF Advocates years ago, Fragile X is one of the authorized research areas at the Department of Defense’s Congressionally Directed Medical Research Program (DOD CDMRP). Millions of dollars in Fragile X research has been funded to date.

The National Fragile X Foundation works with a coalition of other patient advocacy groups to sustain the program, notably in the last year, as some in Congress work to neuter the program. We were successful last year in removing language that would effectively halt the program from the annual National Defense Authorization Act.

This week, the NFXF joined 110 other patient groups to proactively protect the program (the letter is below), and are visiting Hill offices with coalition partners to raise awareness of Fragile X and the importance of the DOD CDMRP.

We say Together, We’re Stronger, because, as Fragile X families, we are stronger together. We are also stronger with other patient advocacy groups, and, together, we will help advance medical research for all diseases and disorders.

Thank you for your investment in the NFXF to make this possible.

FY19 NDAA Letter-Defense Health Research Programs letter (PDF)

Dear Chairmen McCain and Thornberry and Ranking Members Reed and Smith:

As you work to develop your respective versions of the fiscal year 2019 National Defense Authorization Act (NDAA), we encourage you to refrain from including any language that would have a detrimental impact on research at the Congressionally-Directed Medical Research Program (CDMRP) and other medical research conducted by the U.S. Department of Defense (DoD).

Last year, the fiscal year 2018 NDAA reported by the Senate Committee on Armed Services and ultimately approved by the Senate included provisions that would have individually and collectively restricted, if not outright prohibited, medical research on diseases and disorders that affect our nation’s men and women who serve or have served in the U.S. Armed Services.  These provisions (sections 733, 891, 892, and 893 of the Senate bill) would have restricted the types of research that could be funded, and added burdensome contracting and auditing requirements designed for large weapons system contracts.  Moreover, one of these provisions (Section 733) would have affected all medical research at DoD, not just the CDMRP.

In response to the inclusion of this language last year, the U.S. Army’s Medical Research and Materiel Command issued a memorandum that stated:

“This language will impact force readiness and medical providers’ readiness….  Impacts on military medical training programs will negatively affect the readiness of our military health care providers.”

Because the Senate version of the bill is not marked-up in public, our organizations did not have a chance to respond to this language until after the bill was reported from committee.  Furthermore, an amendment to remove this language was filed in the Senate and cosponsored by more than half of the Senate, but was not given a vote on the Senate floor.   After passage of the bill, “Dear Colleague” letters asking for removal of this language in the House-Senate conference were circulated and signed by 54 Senators and 180 Representatives.

Thankfully, the final version of the FY18 NDAA did not include this language.  This result was due in large part to an arduous four-month advocacy campaign by your constituents, who expended an enormous amount of time and energy to defeat language that a clear Majority in Congress opposed from the outset.

The strong level of bipartisan Congressional support for the defense health research programs is a beacon of hope to the military families, retirees, veterans and civilians who must cope with these diseases and disorders.  We urge you to honor their concerns and refrain from including in this year’s NDAA any language that would restrict medical research at DoD.

We appreciate your prompt and urgent consideration of our request.


Action to Cure Kidney Cancer
Adult Congenital Heart Association
ALS Association
American Academy of Dermatology Association
American Academy of Ophthalmology
American Association of Clinical Urologists
American Brain Tumor Association
American College of Rheumatology
American Gastroenterological Association
American Liver Foundation
American Psychological Association
American Urological Association
Aplastic Anemia and MDS International Foundation
Arthritis Foundation
Association of American Cancer Institutes
Association of Public and Land-grant Universities
The Asthma and Allergy Foundation of America
Autism Speaks
Beyond Celiac
Bladder Cancer Advocacy Network
Children’s National Health System
Children’s Tumor Foundation
Christopher & Dana Reeve Foundation
Citizens United for Research in Epilepsy
Coalition for National Security Research (CNSR)
Critical Mass: The Young Adult Cancer Alliance
Crohn’s & Colitis Foundation
Debbie’s Dream Foundation: Curing Stomach Cancer
debra of America
Digestive Disease National Coalition
Duke University
Duke University School of Medicine
Dystonia Advocacy Network
Dystonia Medical Research Foundation
Epilepsy Foundation
Fight Colorectal Cancer
FORCE: Facing Our Risk of Cancer Empowered
Foundation to Eradicate Duchenne
GBS|CIDP Foundation International
Global Health Technologies Coalition
Indiana University
International Foundation for Functional Gastrointestinal Disorders
Interstitial Cystitis Association
Hepatitis B Foundation
Hydrocephalus Association
Indiana University
Infectious Diseases Society of America
International Myeloma Foundation
Kidney Cancer Action Network
Kidney Cancer Association
Leukemia & Lymphoma Society
Littlest Tumor Foundation
Living Beyond Breast Cancer
Lung Cancer Alliance
LUNGevity Foundation
Lupus Foundation of America
Lymphoma Research Foundation
Malaria No More
Malecare Cancer Support
Marfan Foundation
The Michael J. Fox Foundation for Parkinson’s Research
Muscular Dystrophy Association
National Alliance for Eye and Vision Research
National Alliance of State Prostate Cancer Coalitions
National Autism Association
National Brain Tumor Society
National Fragile X Foundation
National Kidney Foundation
National Multiple Sclerosis Society
National Organization for Rare Disorders (NORD)
NephCure Kidney International
Neurofibromatosis Midwest
Neurofibromatosis Network
Oncology Nursing Society
Ovarian Cancer Research Fund Alliance
Pancreatic Cancer Action Network
Parent Project Muscular Dystrophy
Penn State University
Prostate Cancer Foundation
Pulmonary Hypertension Association
Research! America
Restless Legs Syndrome Foundation
Scleroderma Foundation
The Sergeant Sullivan Circle
Sleep Research Society
Society of Gynecologic Oncology
Stony Brook University
Susan G. Komen
TB Alliance
Texas NF Foundation
Theresa’s Research Foundation
Tuberous Sclerosis Alliance
University of California System
University of Hawaii
University of Iowa
University of New Mexico Health Sciences Center
University of Pittsburgh
University of Virginia School of Medicine
US Hereditary Angioedema Foundation
Us TOO International Prostate Cancer Education & Support
Vanderbilt University
Vanderbilt University Medical Center
Veterans for Common Sense
The Veterans Health Council
Vietnam Veterans of America
Wayne State University
Weill Cornell Medicine
ZERO-The End of Prostate Cancer

cc:  Members of the House and Senate