Programs

  • Headache Disorder Awareness and Support

    Provided educational information, videos, articles, documents, and other resources to laypersons as well as medical professionals. Connected with other organizations to advocate for persons with headache disorders and spinal CSF leak. Engaged our community and educated others via our awareness week and inclusive marketing campaigns. Provided community support for those living with spinal CSF leak. Provided research grants and participated in various research meetings regarding Spinal CSF Leak. Provided educational grants and other educational materials regarding Spinal CSF Leak.
    Geographies
    Not indicated
    Dates
    Jul 1, 2021 – Jun 30, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $118.3K

  • Program 1 [2025]

    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.
    Geographies
    Not indicated
    Dates
    Jul 1, 2024 – Jun 30, 2025
    Source
    990
    No causes provided
    No populations provided
    –
    $30.2K

  • Program 2 [2025]

    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.
    Geographies
    Not indicated
    Dates
    Jul 1, 2024 – Jun 30, 2025
    Source
    990
    No causes provided
    No populations provided
    –
    $10.5K