Georgetown Neurosciences Foundation

Georgetown Neurosciences Foundation

More than 16 million people in the U.S. have been identified with cognitive impairment. Progressive dementia in people 65 and older makes up about 50% of this population. The social and economic burden of cognitive impairment is one of the greatest challenges facing our healthcare system — one that will be compounded by the projected increase in the aging population. A large and stable community of seniors and their families have organized in Georgetown Texas to serve as a resource for multi-generational clinical studies into the causes and prevention of cognitive impairment and neurodegenerative diseases. The community has forged working relationships with different academic research centers and pharmaceutical research centers to conduct clinical studies. The community desires to share the outcomes and value of the clinical data which they own and which they wish to see used to support solutions for various neurodegenerative disorders. To accomplish this, the Georgetown community has formed the Georgetown Neuroscience Foundation, a non-profit company to serve as the business resource which will secure and manage the community’s medical information to the regulatory standards required for leading medical research. This Foundation will expand its numbers of subject participants, establish and manage relationships with medical and pharmaceutical research organizations, and commercialize its collective anonymized and aggregated study data, in support of cures and treatment for neurodegenerative diseases.

Vision

A world where the value of a community can be measured by the difficult problems it may creatively solve in partnership with others.

Mission Statement

A multi-generational community committed to lead global medical research in the prevention, cures, and care of Neurodegenerative Diseases.

Objectives

Three objectives of the Georgetown Neuroscience Foundation are to:

1) establish infrastructure for conducting population and clinical research in line with the mission of the GNF
2) establish contracts, collaborations, and partnerships with public and private entities to further the mission of the GNF.
3) educate and assist in furthering the mission of the GNF locally and internationally.

The GNF has is collaborating with the American Brain Coalition which brings together patient programs with professional scientific and clinical organizations and academic institutions. The GNF would represent a unique community based clinical studies focused foundation. This type of foundation is currently not represented in their non-profit membership and affords access to collaborative educational and funding opportunities. The corporate members represent those focused at the leading edge of brain research most of who already work with our medical research colleagues.

Non-profit Membership

• Alliance for Aging Research
• Alliance for Patient Access
• Alzheimer’s Association
• American Academy of Addiction Psychiatry
• American Academy of Neurology
• American Association of Multi-Sensory Environments
• American Brain Foundation
• American Brain Tumor Association
• American College of Neuropsychopharmacology
• American Stroke Association American Dystonia Foundation
• American Epilepsy Society
• American Headache Society
• American Neurological Association
• American Psychiatric Association
• American Psychological Association
• American Society for Experimental NeuroTherapeutics
• American Society of Clinical Psychopharmacology
• American Society of Neurorehabilitation
• Anxiety & Depression Association of America
• Association of University Professors of Neurology
• A-T Children’s Project
• Autism Speaks Brain Aneurysm Foundation
• Benign Essential Blepharospasm Research Foundation
• Biotechnology Industry Organization (BIO)
• Brain & Behavior Research Foundation
• Brain Donor Project
• Bridge the Gap – SYNGAP Education and Research Foundation
• cureCADASIL
• CADASIL Together We Have Hope
• Cerebral Palsy International Research Foundation
• Childhood Brain Tumor Foundation Child Neurology Society
• Cure Alliance for Mental Illness
• Cure Alzheimer’s Fund
• cureSHANKDementia Society of America
• Depression & Bipolar Support Alliance
• Down with DystoniaDyspraxia Foundation USA
• Dystonia Medical Research Foundation
• Encephalitis Global
• Epilepsy Foundation
• Federation of Associations in Behavioral & Brain Sciences
• FND Hope
• Hereditary Disease Foundation Hope for Hypothalamic Hamartomas
• Huntington’s Disease Society of America
• Hydrocephalus Association
• International Alliance for Pediatric Stroke
• International Bipolar Foundation
• International Essential Tremor Foundation
• International Neuroethics Society
• International Parkinson and Movement Disorder Society
• International Rett Syndrome Foundation
• Intracranial Hypertension Research Foundation LGS Foundation
• M-CM Network
• MdDS Balance Disorder Foundation
• Movement Disorders Policy Coalition
• NAMI – National Alliance on Mental Illness
• National Aphasia Association National Association of State Head Injury Administrators
• National Association for Biomedical Research
• National Ataxia Foundation
• National Headache Foundation
• National Multiple Sclerosis Society
• National Organization for Rare Disorders (NORD)
• National Organization for Tardive Dyskinesia
• National Spasmodic Dysphonia
• North American Neuro-ophthalmology Society
• N.W. Noggin One Mind
• Parkinson’s Foundation
• Phelan-McDermid Syndrome Foundation
• PMG Awareness Organization
• Professors of Child NeurologyResearch!America
• Rett Syndrome Research Trust
• Schizophrenia & Related Disorders Alliance of America
• Society of Biological Psychiatry Society for Neuroscience
• Spina Bifida Association
• StopCTE – Patrick Risha CTE Awareness Foundation
• The Association for Frontotemporal Degeneration
• The Bee Foundation
• The Brain Recovery Project: Childhood Epilepsy Surgery Foundation
• The Michael J. Fox Foundation
• The Myelin ProjectThe National Endowment for Alzheimer’s Research
• The Sturge-Weber Foundation
• Tourette Association of America
• Tug McGraw Foundation
Corporate Membership

Early GNF outreach to several contacts in this corporate group has already been initiated through earlier GNF director contacts with decision-makers in collaboration with our clinical institutional research partners.

• AbbVie, Inc.
• Allergan
• Amgen
• Biogen
• GE Healthcare
• Greenwich Biosciences
• Janssen Research & Development, LLC
• Lundbeck, LLC
• Mitsubishi Tanabe Pharma
• Neurocrine Biosciences, Inc
• Novartis Pharmaceuticals Corporation
• Takeda Pharmaceuticals America, Inc.
• Teva Pharmaceuticals Industries Ltd.

These early operational funding efforts with our research partners both current and to come will lay the infrastructure, track record, and relationships for larger-scale federal funding in support of the longitudinal multi-generational studies. The GNF has initiated informational outreach to the program directors of the following: The National Institutes Collaborative Aging-in-place Research Using Technology; the National Institute of Aging, The National Institue of Neurological Disorders and Stroke, The National Institute of Nursing Research, the Department of Veteran Affairs Health Services Research and Development and the National Cancer Institute.

The goal of these efforts will be to establish the GNF along with our research collaborators as a unique community based clinical research resource to recognize the Georgetown Brain Health Study as the major reference study for clinical insight into neurodegenerative diseases.