2026-01-25T10:42:53-08:00 2025-06-30 812852311 W Stevens LLP 9485 E 191st St Noblesville IN 46060 990EZ 2024-07-01 471141080 Spinal CSF Leak Foundation SPIN 5096764112 100 N Howard St Ste 5792 Spokane WA 99201 Jennifer MacKenzie Treasurer 2026-01-24 true true Wendy Stevens CPA P01964214 3172819063 X 2024 2025-03-06 01:10:19Z X https://spinalcsfleak.org X X 117854 X 117131 723 0 0 0 0 117854 46037 36996 649 702 36569 120953 -3099 341049 337950 X 345555 346707 6463 345555 353170 4506 15220 341049 337950 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. 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. 30159 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. 10549 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. 4697 45405 Jennifer Schoon PT DPT Director 5.00 0 Martha Bond Director 5.00 0 Jodi Ettenberg President 40.00 0 Cara Gady Church Director 3.00 0 Jennifer MacKenzie Executive Dir. 20.00 37398 Kyle Spawn Vice President 10.00 0 Aubrey Bolan Secretary 10.00 0 Isaac Brodsky Director 5.00 0 Olivia Chelko Executive Dir. 30.00 2428 Jennifer MacKenzie Treasurer 20.00 0 false false false false false false false 0 0 0 false 0 0 false Jennifer MacKenzie 100 N Howard St Ste 5792 Spokane WA 99201 5096764112 false false false false false false false false false false false NONE NONE true X 165793 221789 157182 176156 117131 838051 0 0 165793 221789 157182 176156 117131 838051 0 838051 0 0 410 484 533 580 723 2730 840781 0.99680 0.99750 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Other Expenses.1002 Office Expenses $673 Other Expenses.1003 Information Technology $6078 Other Expenses.1007 Conferences, Conventions, and Meetings $25916 Other Expenses.1 Books, Subscriptions, $1275 Other Expenses.2 Membership Dues $1200 Other Expenses.3 Job Advertising $703 Other Expenses.5 Educational Expenses $408 Other Expenses.6 Community Support $244 Other Expenses.8 Telephone $72 Other Assets.1 Undeposited Funds - Beginning $0 Undeposited Funds - Ending $6463 Total Liabilities.1001 Accounts Payable and Accrued Expenses - Beginning $4506 Accounts Payable and Accrued Expenses - Ending $15197 Total Liabilities.1 Payroll Liabilities - Beginning $0 Payroll Liabilities - Ending $23