named programs · 3 · from sources
What they call their work
Chiari & Syringomyelia Handbook
Comprehensive patient and family guide available for free download or purchase, providing detailed information on diagnosis, treatment, and living with Chiari and syringomyelia.
Patient Education Resources
Online informational materials including definitions, symptoms, diagnostic methods, and treatment options for Chiari malformation and syringomyelia.
Video Library
Collection of educational videos featuring expert speakers on Chiari malformation, syringomyelia, and related disorders, aimed at patients and medical professionals.
activities · 6 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Advocating for policy change and research fundingOrganizes Advocacy Day on Capitol Hill to meet with legislators and advocate for improved recognition, research, and grant support for rare and connective tissue disorders including Chiari malformation and syringomyelia.
- Facilitating research participation and collaborationSupports collaboration between clinicians and researchers to advance understanding of Chiari and syringomyelia. Facilitates patient enrollment in genetics research studies conducted by Washington University and other partners.
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Medical Professional Education & Training 1 activity
- Advancing medical education for professionalsProvides medical education programs such as “Consider Chiari” and maintains a video library with expert speakers to train physicians and medical professionals. Ensures scientific accuracy through annual reviews by the Scientific Education & Advisory Board.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding research on Chiari malformation, syringomyelia, and related disordersFunds innovative research studies on Chiari malformation, syringomyelia, and related disorders conducted by external researchers, with over $6 million awarded to date. Supports and advances scientific understanding through grantmaking.
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Charity Event Organization 1 activity
- Organizing awareness and fundraising eventsCoordinates a nationwide network of fundraising and awareness events for individuals affected by Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome, dysautonomia, and related disorders. Hosted the 2025 Thrive Summit in Washington, D.C., bringing together medical experts, researchers, and patient advocates.
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Familial Support for Rare Genetic Conditions 1 activity
- Supporting patient and caregiver communitiesOperates an online support community on Inspire and provides connection and emotional support for families affected by Chiari and syringomyelia. Connects patients and caregivers with social services through partnerships with the Child Neurology Foundation and Unite Us.
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Uncategorized 1 activity
- Providing educational resources for patients and familiesOffers comprehensive, board-reviewed handbooks, downloadable PDFs, and online information about Chiari malformation and syringomyelia for free access. Includes condition-specific guidance on complications like hydrocephalus and tools such as the Chiari@School program to support children’s education.
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financials · form 990 · fy2025
revenue
Total revenue$1.15M
Contributions & grants$1.22M106%
Program service revenue$00%
Investment income$48K4%
Other revenue$-117K
expenses
Total expenses$917K
Program expenses70%
Admin / overhead13%
Fundraising17%
Salaries & benefits$562K
Grants paid out$1K
Largest expense lineCompensation
balance sheet
Total assets$1.68M
Cash$752K
Investments$898K
Liabilities$66K
Net assets$1.62M
Liquid reserves21.6 mo
6 years on record · 2020–2025 · YoY revenue +17.4%
leadership · form 990 part vii · fy2025
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| DOROTHY J POPPE | EXECUTIVE DI | 40 | $176K |
board members · 17
- AMANDA HARRIS — DIRECTOR
- CAMERON KIM DAWSON — DIRECTOR
- CATHERINE LOUGHIN DVM — TREASURER
- CODY LAIRD — TRUSTEE
- CRAIG LIBSON — TRUSTEE
- DOMINIC J MARINO DVM — TRUSTEE
- JAMES RAINS — CHAIR
- KATHERINE CLAY — TRUSTEE
- LORY WATSON — VICE CHAIR
- MARINA C WHITE — DIRECTOR
- MICHAEL N MIKULA — TRUSTEE
- PAM FENNER — SECRETARY
- PAUL J FARRELL — CHAIR EMERIT
- ROBERT JONES BLACK — TRUSTEE
- ROBERT WALKER WESTBROOK — TRUSTEE
- TYGH WYCKOFF MD — TRUSTEE
- TYLER GUETTLER — TRUSTEE
relationships · 31
Who they work with
- Cathy Poznik Partner — Point of contact for event coordination and support for unite4answers events.
- Child Neurology Foundation Partner — Partnered to connect patients and caregivers with social service options.
- Children’s of Alabama – University of Alabama Partner — Collaborates through Brandon G. Rocque, M.D., contributing pediatric neurosurgical expertise to the foundation's educational content.
- Children’s of Alabama – University of Alabama Partner — Partners with pediatric neurosurgery faculty from Children’s of Alabama and University of Alabama
- Duke University Medical Center Partner — Collaborates through Allison Ashley-Koch, M.D., contributing expertise in medical genetics to the foundation's educational content.
- Duke University Medical Center Partner — Collaborates with medical contributors from Duke University Medical Center's Department of Medicine, Section of Medical Genetics
- Epilepsy Foundation Partner — Lists the Epilepsy Foundation as a reputable external resource for patient education.
- Hydrocephalus Association Partner — Lists the Hydrocephalus Association as a trusted resource for hydrocephalus-related information and community support.
- Inspire Partner — Hosts a support community for patients and families affected by Chiari malformation and syringomyelia.
- Metropolitan Neurosurgery Group Partner — Collaborates through Fraser C. Henderson, M.D., contributing neurosurgical expertise to the foundation's educational content.
- Metropolitan Neurosurgery Group Partner — Partners with neurosurgical experts from Metropolitan Neurosurgery Group
- National Combined Federal Campaign Government — Participant in the National Combined Federal Campaign (CFC), enabling federal employees to donate.
- National Institutes of Health Government — Collaborates with Dr. John Heiss, affiliated with the National Institutes of Health
- National Institutes of Health Partner — Collaborates through John Heiss, M.D., contributing research expertise in neurological surgery to the foundation's educational content.
- Norris Lab at MUSC Partner — Co-hosted the 2025 Thrive Summit with Bobby Jones CSF.
- Oregon Health Science Center Partner — Collaborates through Daniel Guillaume, M.D., contributing neurosurgical expertise to the foundation's educational content.
- Oregon Health Science Center Partner — Partners with neurosurgery department at Oregon Health Science Center
- Paul J. Farrell Government — Chair Emeritus of Bobby Jones CSF’s Board of Directors and namesake of the Paul J. Farrell Research Endowment.
- Scientific Education & Advisory Board Partner — Collaborates with medical experts and scientists to develop, review, and approve medical content and research direction.
- The Cleveland Clinic Partner — Collaborates through Edward C. Benzel, M.D., contributing neurological surgery expertise to the foundation's educational content.
- The Cleveland Clinic Partner — Collaborates with former neurological surgery faculty from The Cleveland Clinic
- The University of Akron Partner — Collaborates through Francis Loth, M.S., Ph.D., contributing engineering expertise to the foundation's educational content.
- The University of Akron Partner — Engages engineering faculty from The University of Akron for research collaboration
- Unite Us Partner — Partnered to connect patients and caregivers with social service options.
- University of Idaho Partner — Collaborates through Bryn A. Martin, Ph.D., contributing biomedical engineering expertise to the foundation's educational content.
- University of Idaho Partner — Collaborates with researchers in biological engineering from the University of Idaho
- University of Michigan Partner — Collaborates through Cormac O. Maher, M.D., contributing neurological surgery expertise to the foundation's educational content.
- University of Michigan Partner — Works with neurological surgery faculty from the University of Michigan
- University of Wisconsin Hospitals and Clinics, Madison Partner — Collaborates through Bermans J. Iskandar, M.D., contributing neurosurgical expertise to the foundation's educational content.
- University of Wisconsin Hospitals and Clinics, Madison Partner — Collaborates with neurosurgical experts from the Department of Neurological Surgery at University of Wisconsin
+ 1 more
strategies · 3
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.
- Integrated Research, Education, and Support Modelmethodology: integrated_research-education-supportBy simultaneously advancing research, educating medical professionals and the public, and empowering affected families through support, the foundation improves patient outcomes because progress in each area reinforces the others, creating a synergistic effect that accelerates understanding and care for Chiari malformation and syringomyelia.
- Patient Empowerment Through Education and Storytellingmethodology: patient_education_and_storytellingBy providing medically accurate, accessible education and training in storytelling, the foundation enables patients and families to navigate care and advocate effectively because informed and narratively empowered individuals achieve better health decisions and reduced isolation.
- Peer-to-Peer and Community-Led Advocacy & Fundraisingmethodology: peer-to-peer_fundraisingBy empowering community members to lead fundraising events and share personalized campaigns, the foundation increases awareness and donor engagement because personal networks amplify reach and trust, leveraging lived experience to drive participation.