November 21, 2024

Dear Chair Baldwin, Ranking Member Capito, Chair Aderholt, and Ranking Member DeLauro,

We, the undersigned organizations, are writing to express our strong support for the National Institutes of Health (NIH) Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative and the NIH All of Us Research Program. As Congress completes negotiations on FY 2025 appropriations we respectfully request that you maintain or exceed the total Senate-proposed funding levels of $680.4 million for the BRAIN Initiative and $541 million for the All of Us Research Program for Fiscal Year 2025. Each of these programs is supported by the 21st Century Cures Innovation Fund. With diminishing resources available from the Innovation Fund, it is critical that Congress provide sufficient discretionary appropriations to allow these two groundbreaking programs to continue to make revolutionary advances that can improve brain and overall health outcomes.

BRAIN Initiative
Despite tremendous progress, brain disorders, such as Alzheimer’s disease, Parkinson’s disease, autism, epilepsy, schizophrenia, depression, and traumatic brain injury, are projected to be some of the most disabling and costly chronic diseases in the 21st century. One in three Americans will have a brain or nervous system disorder sometime in their life and the cost of treating neurological disorders is nearly $1.5 trillion each year. The BRAIN Initiative is revolutionizing our understanding of the brain and offering hope for the millions of individuals impacted by brain diseases and conditions.

Significant strides in neuroscience research have been made in the past few years. Some examples of this include advancements in Deep Brain Simulation (DBS), which have provided life-changing improvements for patients with severe depression, obsessive-compulsive disorder,
and traumatic brain injury (TBI), and more recently, a study that showed success in demonstrating that a computerized brain implant can decode internal speech.

Another recent advancement includes the monumental neuroscience news that the BRAIN Initiative Cell Census Network (BICCN) program, for the first time ever, created a cell atlas of a whole mouse brain and a draft cell atlas of the human brain. These multidisciplinary findings bring researchers closer to understanding the brain’s cellular makeup and how brain disorders develop, progress, and are best treated and provide important tools for researchers to continue to make discoveries.

Despite continued progress and growing opportunity, The BRAIN Initiative has faced decreased funding in recent years, reducing its capabilities. Due to the drop in 21st Century Cures funding and the lack of additional discretionary funding, the BRAIN Initiative received only $402 million in FY 2024—roughly a 40% cut from the previous year’s appropriation. The significant funding reduction has impacted the BRAIN Initiative’s capacity to support potential groundbreaking research, with only 50% of proposals being funded in FY 2024. With flat discretionary funding in FY 2025, the BRAIN Initiative will face an additional $81 million cut, resulting in fewer than 20% of research proposals being funded. This would impede new clinical neurologic advancement for thousands of those with debilitating brain diseases and conditions. Ultimately, we strongly encourage you to further your support for the BRAIN Initiative to ensure that these exciting advancements in neuroscience continue.

All of Us Research Program
The All of Us Research Program is designed to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, the program aims to uncover paths toward delivering precision medicine—tailored to the individual.

The program's diverse cohort is critical to its success. Historically, medical research has not always been representative of the population at large, leading to gaps in knowledge and care. All of Us is committed to including participants from all walks of life, especially those who have been underrepresented in biomedical research. This inclusivity is essential for ensuring that the findings of the research are applicable to everyone and can lead to more precise healthcare solutions based on individual differences and improved public health outcomes.

The program is still working towards the goal of enrolling one million participants, yet it is already delivering results to participants and the scientific/medical community. More than 100,000 participants have received personalized health-related DNA reports from the program, with information about hereditary disease risk and how their bodies process certain medications. Through these reports, All of Us provided potentially life-saving information about the genetic risk of cancers, heart disease, or other conditions to more than 2,000 participants already. Researchers and institutions from all fifty states have signed up to utilize the All of Us dataset. As a result, researchers have initiated more than 10,000 projects using All of Us data and published hundreds of papers in peer-reviewed journals – on cancer, diabetes, kidney health, heart disease, depression, glaucoma, COVID-19, alcohol and substance use, physical activity, and other topics.

Just recently, the program reported the discovery of 275 million previously unknown genetic variants from data shared by All of Us participants, a massive tranche that may offer new clues about genetic influences on health and disease.

Much more work remains before the full potential of All of Us can be realized. This includes the active recruitment of children into the cohort to improve the health of children and to better understand conditions that onset in adulthood but are rooted in childhood. However, decreased funding in Fiscal Year 2024 now threatens the program and the scientific breakthroughs envisioned for the program. In FY24, All of Us received $357 million representing a decrease of $184 million (34%) compared to last year’s appropriation. According to the program’s leadership, this decrease in funding will have a substantial impact, including: a decrease in the rate of new enrollments, a delay in the launch of pediatric enrollment, and a slowing of new data collection.

Conclusion
Further funding cuts for the Brain Initiative and the All of Us Research Program in FY 2025 will limit their ability to advance research, support new studies, spark discoveries that revolutionize understanding of brain function, and ensure researchers have data that is representative of the entire population. As champions of the BRAIN Initiative and the All of Us Research Program, we urge you to support these important programs in FY 2025 to ensure continued innovative research and improved health for all Americans. Thank you for your attention to this important matter and for your continued commitment to advancing medical research and public health. If you have questions or would like further information, please reach out to Meghan Riley at mriley@dc-crd.com.

Sincerely,

American Brain Coalition
A Nation of Hope
ACCESS
Alliance for Aging Research
Alliance for Headache Disorders Advocacy
Alliance for Patient Access
American Academy of Neurological Surgery
American Academy of Neurology
American Association of Colleges of Nursing American Association of Colleges of Pharmacy
American Association of Neurological Surgeons
American Association on Health & Disability
American Clinical Neurophysiology Society
American College of Clinical Pharmacy
American College of Neuropsychopharmacology
American Epilepsy Society
American Neurological Association
American Public Health Association
American Society of Human Genetics
American Stroke Association
Anxiety and Depression Association of America
Area Health Education Center for Western Washington
Asian Health Coalition
Association of University Professors of Neurology
Baker Street Cares Foundation
BCI Pioneers Coalition
BDSRA Foundation
Brain Aneurysm Foundation
Brain Injury Association of America Brown University
CACNA1A Foundation
Canavan Foundation
Carilion Clinic/ Virginia Tech Carilion School of Medicine
Cerebral Palsy Research Network
Childhood Brain Tumor Foundation
Chronic Migraine Awareness, Inc.
Coalition to Cure CHD2
Congress of Neurological Surgeons
Council on Social Work Education
CSNK2A1 Foundation
Cure Alzheimer's Fund
Cure Brain Disease
CURE Epilepsy
CURE GABA-A
cureCADASIL
CureSHANK
Danny Did Foundation
Dementia Society of America
Dillard University Community Relations
Dravet Syndrome Foundation
Dup15q Alliance
DYNC1H1 Association
Dyspraxia DCD America
Epilepsies Action Network (EAN)
Epilepsy Alliance America
Epilepsy Foundation of America
Epilepsy Leadership Council
FAM177A1 Research Fund
FamilieSCN2A Foundation
FND Hope
Friedman Brain Institute, Icahn Mount Sinai
Friedreich’s Ataxia Research Alliance (FARA)
GABA-A Alliance
GRIN2B Foundation
Harvard University
Headache and Migraine Policy Forum
Hope for HIE
Hope for Hypothalamic Hamartomas
Huntington's Disease Society of America
Hydrocephalus Association
IEEE Brain
INADcure Foundation
International Alliance for Pediatric Stroke
International BCI Society
International Bipolar Foundation
International Essential Tremor Foundation
International Foundation for CDKL5 Research
International OCD Foundation
Kappa Alpha Psi Fraternity Inc
KCNQ2 Cure Alliance
Lakeshore Foundation
LEAD Coalition (Leaders Engaged on Alzheimer's Disease)
Lennox-Gastaut Syndrome (LGS) Foundation
Lundbeck Pharmaceuticals LLC
M-CM Network
Maryland Rural Health Association
McLean Hospital
MdDS Balance Disorder Foundation
Medical Technology Enterprise Consortium (MTEC)
Miles for Migraine
MLD Foundation
Movement Disorders Policy Coalition
Nash Family Center for Advanced Circuit Therapeutics at Mount Sinai
National Alliance on Mental Illness
National Association for Biomedical Research
National Association of Hispanic Nurses
National Association of State Head Injury Administrators
National Association of State Mental Health Program Directors
National Ataxia Foundation
National Headache Foundation
National Hispanic Medical Association National Institute of Mental Health
National Multiple Sclerosis Society
National Network of Depression Centers
National Rural Health Association
Neurotech Network
New Orleans Council on Aging
New York University
NORSE Institute North American Neuromodulation Society
Northwest Noggin
NR2F1 Foundation
Otsuka America Pharmaceutical, Inc. Parkinson’s Foundation
Pediatric Epilepsy Research Consortium
Phelan-McDermid Syndrome Foundation
PURA Syndrome Foundation
Rare Epilepsy Network (REN) Coordinating Committee
Rural Minds
SCDAI Sickle Cell Disease Association of Illinois
Seven Star Academy Inc
Society for Neuroscience
Society for Women’s Health Research
Society of Neurological Surgeons
South Carolina Advocates for Epilepsy
Southern University at Shreveport
STXBP1 Foundation
SynGAP Research Fund dba Cure SYNGAP1
TBF for Brain Aneurysm Prevention
The Association for Frontotemporal Degeneration
The Brain Donor Project
The Cute Syndrome Foundation
The Kennedy Forum
The Michael J. Fox Foundation for Parkinson's Research
The Salk Institute
The STARR Coalition
The Sturge-Weber Foundation
Treatment Advocacy Center
TSC Alliance
UnidosUS University of Illinois College of Medicine
University of Kansas Medical Center
University of Nebraska Medical Center
University of Pittsburgh
v-ATPase Alliance
Vanderbilt University Medical Center
Walt's Waltz
YWHAG Research Foundation
cc: The Honorable Patty Murray, Chair, U.S. Senate Committee on Appropriations
The Honorable Susan Collins, Vice Chair, U.S. Senate Committee on Appropriations
The Honorable Tom Cole, Chair, U.S. House Committee on Appropriations