Spinal CSF Leak Foundation

What it reported doing in 2024

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.

Financial Efficiency

• Mission deployment rate: 38.5%; rating input score 39
• Program expense ratio: 37.5%; rating input score 38

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
• Major donor itemization: Yes; rating input score 100

Sustainability

• Operating margin: -2.6%; rating input score 27; 27th percentile among comparable filings
• Total-asset coverage ratio: 2.92; rating input score 89; 89th percentile among comparable filings
• Liabilities to assets ratio: 0.04; rating input score 31; 31st percentile among comparable filings
• Officer compensation ratio: 32.9%; rating input score 10; 10th percentile among comparable filings

Growth

• Program expense growth: 5.4% per year; rating input score 100; 48th percentile among comparable filings
• Revenue growth: 2.9% per year; rating input score 100; 36th percentile among comparable filings
• Asset growth: 17.2% per year; rating input score 100; 76th percentile among comparable filings