irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $254KAdvocacy Initiatives - Patient Support and Empowerment programs.
- #2 $214KProviding research funding for projects at major University Research Centers.
named programs · 4 · from sources
What they call their work
Clinician Education
Programs designed to educate medical professionals about dysautonomia conditions, treatments, and research advancements
Dysautonomia International Autonomic Disorders Fellowship
One-year clinical training program at the University of Toledo Medical Center to train physicians in diagnosing and treating autonomic disorders, led by Dr. Blair Grubb
Patient Support and Empowerment Programs
Initiatives providing educational resources and emotional support for individuals living with dysautonomia and their families
Research Funding
Grants provided to support scientific research projects at major university research centers focused on dysautonomia
activities · 4 groups
What they do
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Disease-Specific Clinical & Patient Education 2 activities
- Providing clinical and scientific education programsOrganizes conferences and produces educational content for clinicians and medical professionals on dysautonomia, including POTS, multiple system atrophy, and other autonomic disorders. Compiles and shares curated journal articles and resources for physicians and provides comprehensive materials such as Dr. David Goldstein’s 709-page textbook 'Principles of Autonomic Medicine'.
- Providing educational resources for patients and the publicDistributes free, accessible educational materials about dysautonomia and related conditions, including POTS, familial dysautonomia, and diabetic autonomic neuropathy. Produces easy-to-read brochures, fact sheets (e.g., '10 Facts About Dysautonomia'), symptom forms, medical accommodation cards, and exercise guides. Also publishes school presentations and patient stories to raise awareness and reduce isolation.
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Biomedical Research and Innovation 1 activity
- Conducting and supporting research collaborationsCollaborates with researchers to collect long-term follow-up data on POTS patients and compiles key research articles for public access. Supports scientific advancement through data aggregation and dissemination.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding research on dysautonomia and autonomic disordersFunds medical research to advance understanding of autonomic disorders, develop treatments and cures, and supports research grants globally through a competitive, peer-reviewed process. Has funded over $5 million in POTS research and established the Dysautonomia Research Fund to expand funding beyond POTS. Grants include multi-year projects, pediatric-focused research, and equipment awards to institutions including Johns Hopkins, Stanford, Dartmouth-Hitchcock, and the University of Calgary.
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Cancer Peer Support & Wellness Programs 1 activity
- Operating patient support and empowerment programsRuns local support groups, an interactive map to connect patients and events, and shares patient stories to foster community and reduce isolation. Engages in advocacy initiatives and provides emotional health resources, including pandemic-specific guidance and video support.
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financials · form 990 · fy2024
revenue
Total revenue$1.11M
Contributions & grants$874K79%
Program service revenue$159K14%
Investment income$97K9%
Other revenue$-19K
expenses
Total expenses$1.22M
Program expenses87%
Admin / overhead1%
Fundraising12%
Salaries & benefits$581K
Grants paid out$111K
Largest expense lineCompensation
balance sheet
Total assets$2.74M
Cash$2.65M
Investments$24K
Liabilities$142K
Net assets$2.60M
Liquid reserves26.4 mo
3 years on record · 2020–2024 · YoY revenue -25.2%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| LAUREN STILES JD | President & CEO | 70 | $135K |
board members · 6
- AMY KOHUT JD — Director
- IRENE COLLINS — Director
- JACQUELINE RUTTER GULLY — Vice President
- LIZA FISHER MBA — Secretary
- SALVATORE DESENA MD — Director
- SHANNON KOPLITZ — Treasurer & CFO
relationships · 34
Who they work with
- Brigham & Women's Hospital Partner — Funded network analysis and brain imaging studies in dysautonomia at Brigham & Women's Hospital, Harvard Medical School.
- CDC Government — Monitors and references CDC reports and guidance in providing information to the dysautonomia community.
- Call for Proposals Partner — Platform for disseminating research funding opportunities
- Case Western Reserve University Partner — Funded immunology-focused POTS research at Case Western Reserve University.
- Christopher & Dana Reeve Foundation Partner — Collaborates by providing or linking to information on autonomic dysreflexia.
- Dartmouth-Hitchcock Medical Center Partner — Received an equipment grant for a Transcranial Doppler device for dysautonomia research and clinical care.
- Dysautonomia Foundation, Inc. Partner — Partner organization providing resources on familial dysautonomia.
- Dysautonomia International Support Group Network — Local support groups operated by Dysautonomia International to connect individuals affected by dysautonomia.
- FD Now Partner — Partner organization offering educational content on familial dysautonomia.
- Harvard University Partner — Funded POTS research studies conducted at Harvard University and affiliated institutions.
- Johns Hopkins University Partner — Funded multiple POTS research projects led by investigators at Johns Hopkins University.
- Johns Hopkins University Partner — Funded research on SCN9A mutations and provided equipment grants for Transcranial Doppler devices at its autonomic lab.
- Kings College London Partner — Funded research on autoantibodies and sympathetic dysfunction in POTS and Long COVID at Kings College London.
- Lumia Health Partner — Gold sponsor contributing support to the organization.
- Lumia Health Partner — Gold sponsor supporting Dysautonomia International's programs.
- Lund University Partner — Funded international research on autoantibodies and proteome profiling in POTS at Lund University in Sweden.
- Mayo Clinic Partner — Collaborates with researchers at Mayo Clinic on POTS studies, including long-term follow-up data.
- Medical Advisory Board Partner — Consults with its Medical Advisory Board to inform public health communications during the pandemic.
- National Institute of Neurological Disorders and Stroke Network — References information from the National Institute of Neurological Disorders and Stroke.
- National Institutes of Health Rare Disease Network's Autonomic Disorders Consortium Network — Collaborates with or references research from the NIH Rare Disease Network's Autonomic Disorders Consortium.
- NormaLyte Partner — Gold sponsor supporting Dysautonomia International's programs.
- Normalyte Partner — Gold sponsor supporting the organization's initiatives.
- Reflex Sympathetic Dystrophy Syndrome Association Partner — Partner organization linked for information on complex regional pain syndrome.
- Stanford University Partner — Funded an open-label study on immune therapies for autoimmune gastrointestinal dysmotility.
- Stanford University Partner — Funded multiple POTS research initiatives at Stanford University, including studies on immune therapies and autonomic complications of Long COVID.
- The Dysautonomia Center Partner — Partner institution providing clinical and educational resources on dysautonomia.
- University of Calgary Partner — Funded numerous POTS research projects led by Dr. Satish Raj and others at the University of Calgary.
- University of Calgary Partner — Received an equipment grant for a Transcranial Doppler device for dysautonomia research and clinical care.
- University of Utah Partner — Funded studies on exercise intolerance, mitochondrial dysfunction, and nitric oxide metabolism in POTS at the University of Utah.
- University of Utah Partner — Received an equipment grant for a Transcranial Doppler device for dysautonomia research and clinical care.
+ 4 more
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Education-First Awareness and Diagnosismethodology: education-firstBy increasing public and professional education about dysautonomia, we improve early diagnosis and care access, because foundational understanding of the autonomic nervous system and condition-specific symptoms reduces misdiagnosis and delays in treatment.
- Multi-Stakeholder Research Evaluationmethodology: multi-stakeholder_reviewBy involving scientists, clinicians, and patient advocates in the grant review process, we ensure funded research is both scientifically rigorous and aligned with patient needs, because inclusive evaluation improves research relevance and real-world impact.
- Patient-Empowered Care Ecosystemmethodology: patient-empowered_provider_educationBy equipping patients with educational tools and peer networks, we enhance their ability to engage with providers and manage their condition, because informed and connected patients drive better clinical communication and self-advocacy.
- Targeted Research Funding for Treatment Developmentmethodology: research-funding for treatment developmentBy funding research focused on underlying causes and expanding support to under-researched forms of dysautonomia, we accelerate treatment and cure development, because targeted investment in scientific inquiry drives medical breakthroughs.