Spinal Csf Leak Foundation
Public records show a registered, tax-exempt organization in good standing.
What it says it does
The Spinal CSF Leak Foundation is a 501(c)(3) nonprofit organization dedicated to reducing the suffering of any person affected by intracranial hypotension or spinal cerebrospinal fluid leak.
- Income
- $117,854
- Spending
- $120,953
- Reserves
- 33.5 months of spending
- Largest source of income
- donations and private grants, 99%
- Highest pay
- $37,398, executive dir.
Source: Form 990EZ for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 90 out of 100. Higher than 71% of charities in its peer group (diseases, under $250k).
Reserves
35 of 35Spendable reserves would cover 33.5 months of spending.
Debt
20 of 20It owes 4% of what it owns.
Living within its means
8 of 15Spending exceeded income by 3% of income.
Source: Form 990EZ for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.
Source: Form 990EZ for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $30,159 spent. The Spinal CSF Leak Foundation is a 501(c)(3) nonprofit organization dedicated to reducing the suffering of any person affected by intracranial hypotension or spinal cerebrospinal fluid (CSF) leak. The organizations educational programs provide broad public benefit by increasing access to accurate medical information, improving health literacy, reducing diagnostic delays, and strengthening community support. Online educational resources on the Spinal CSF Leak Foundations website this year included expanding a Physician Directory, increasing patient and clinician resources about spinal CSF leak, and adding to an extensive online educational video library. More than 800 individuals from the United States and internationally registered for the Spinal CSF Leak Foundations annual Spinal CSF Leak: Bridging the Gap Conference, where the attendance was free for patients worldwide whether attending in person or virtually. This unique conference integrated physician and medical professional presentations with patient presentations sharing lived experience of the condition, and the agenda included both physician, medical professional, and patient perspectives in diagnosis, imaging, management, interdisciplinary care, and emerging research. All sessions were recorded and later published with transcripts on the Spinal CSF Leak Foundations website, at no cost, further expanding access to educational content for individuals facing financial, geographic, health, or mobility barriers. During the fiscal year, the Spinal CSF Leak Foundation responded to 181 patient inquiries submitted through its website, along with hundreds of additional messages received through email, social media, and the Inspire support community. While medical advice cannot be provided, the Spinal CSF Leak Foundation offered educational guidance and referrals to reputable resources to help individuals better understand their condition, navigate care, and communicate more effectively with clinicians and loved ones. The Spinal CSF Leak Foundation also provided an educational grant supporting the 2025 Intracranial Hypotension Conference, an international scientific meeting with leaders in the field. As a result of this grant, the Spinal CSF Leak Foundation was able to share video replays and transcripts from the conference on its website and social media, further expanding access to no-cost educational content and reducing barriers for the spinal CSF leak community. These videos are not available elsewhere online and provide an important resource for patients.
- $10,549 spent. The Spinal CSF Leak Foundation advanced public and community awareness of intracranial hypotension or spinal CSF leak through national digital outreach and educational campaigns. The annual awareness campaign, leakweek, featured myth-and-fact posts created in collaboration with international patient nonprofits in the field, along with city and state proclamations and 15 landmark light-ups across 15 states in the United States, increasing national visibility of spinal CSF leak. The Spinal CSF Leak Foundation also hosted its annual duradash activity challenge, inviting participants to log 150 minutes of activity to raise awareness and funds. Program expenses for this initiative included use of a peer-to-peer fundraising platform to support participation and outreach. The Spinal CSF Leak Foundations digital awareness footprint continued to grow and includes 15,698 Inspire community members, more than 11,000 Facebook followers, 5,860 YouTube subscribers, more than 2,500 Instagram followers, and over 150,000 page views on its website. These platforms serve as accessible channels for patients, caregivers, and clinicians seeking reliable information, emotional support, and connection with others. Educational graphics, articles, and story-based outreach helped reduce isolation, promote early recognition, and support informed conversations between patients, caregivers, and healthcare providers. This growing digital impact provides connection, peer support, shared learning, and collective advocacy for thousands of individuals in the United States and worldwide. By responding to patient inquiries, guiding individuals toward reputable information, and elevating the patient perspective through a governance structure composed entirely of patients with lived experience of intracranial hypotension or spinal CSF leak, the Spinal CSF Leak Foundation helps reduce misinformation and improve understanding and awareness of a debilitating neurological condition. These awareness and education efforts also help patients become more effective advocates for themselves and support clinicians in better understanding the patient perspective, producing long-term community-wide benefit.
- $4,697 spent. The Spinal CSF Leak Foundation advanced research through continued development of its international patient registry and by expanding free public access to scientific literature relevant to spinal CSF leak. Registry development activities included survey refinement and multiple rounds of testing by patients and volunteers. Once launched, the international patient registry will support patient-driven data collection, research collaboration, and improved understanding of diagnostic pathways and treatment outcomes. The Spinal CSF Leak Foundation also expanded its online publication abstract library by adding more than 100 abstracts from newly published scientific papers during the fiscal year. By providing centralized access to current research at no cost, the Spinal CSF Leak Foundation reduced financial and access barriers for patients, clinicians, and researchers seeking up-to-date information on diagnostic methods, imaging advances, treatment outcomes, and emerging research in the field.
Source: Form 990EZ for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending June 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since October 2014.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.