Liabilities / Assets
74th percentile
Higher debt load relative to assets than 74% of similar nonprofits.
Spinal Csf Leak Foundation
EIN 47-1141080 • 501(c)3 • Spokane, WA
Profile
To reduce the suffering of persons affected by intracranial hyoptension of spinal cerebrospinal fluid leak.
Siviq Scores
Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.
0.04x
Liabilities / Revenue
84th percentile
Higher debt load relative to revenue than 84% of similar nonprofits.
Net Margin
40th percentile
Higher net margin than 40% of similar nonprofits.
Top Officer Pay
96th percentile
Higher top officer pay than 96% of similar nonprofits.
Top officer pay equals 31.7% of source-year revenue.
Asset Growth
65th percentile
Faster asset growth than 65% of similar nonprofits.
Revenue Growth
32nd percentile
Faster revenue growth than 32% of similar nonprofits.
Balance Sheet
Assets
Up$353,170
Up $7,615 (+2.2%) from 2024
Liabilities
Up$15,220
Up $10,714 (+238%) from 2024
Net Assets
Down$337,950
Down $3,099 (-0.9%) from 2024
Revenue
Down$117,854
Down $58,882 (-33%) from 2024
Expenses
Down$120,953
Down $32,643 (-21%) from 2024
Net Income
Down-$3,099
Down $26,239 (-113%) from 2024
Trend Graphs
Filings
Most recent year
2025 • Form 990EZDetailed filing. Detailed filing data is available for this year.
- Assets
- $353,170
- Liabilities
- $15,220
- Net assets
- $337,950
- Revenue
- $117,854
- Expenses
- $120,953
- Net income
- -$3,099
Latest Filing Detail
Jump To
Filing Snapshot
- Filing Period
- Jul 1, 2024 to Jun 30, 2025
- Signed
- Jan 24, 2026
- Return Version
- 2024v5.2
- Gross Receipts
- $117,854
Mission and Program Overview
Mission
To raise awareness and provide educational and research grants regarding Spinal CSF 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 leak.
Program Services
| Description | Grants | Expenses |
|---|---|---|
| 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. | - | $30,159 |
| 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. | - | $10,549 |
| 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. | - | $4,697 |
Compensation and Service Providers
Employees
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Jennifer MacKenzie | Executive Director | PT | $37,398 | - | $37,398 |
| Olivia Chelko | Executive Director | PT | $2,428 | - | $2,428 |
| Jennifer Schoon PT DPT | Director | PT | $0 | - | - |
| Martha Bond | Director | PT | $0 | - | - |
| Jodi Ettenberg | President | FT | $0 | - | - |
| Cara Gady Church | Director | - | $0 | - | - |
| Kyle Spawn | Vice President | PT | $0 | - | - |
| Aubrey Bolan | Secretary | PT | $0 | - | - |
| Isaac Brodsky | Director | PT | $0 | - | - |
| Jennifer MacKenzie | Treasurer | PT | $0 | - | - |
Filing and Contact Details
Filer
- Filer Name
- Spinal CSF Leak Foundation
- EIN
- 47-1141080
- Phone
- 5096764112
- Address
- 100 N Howard St Ste 5792, Spokane, WA 99201
Signing Officer
- Name
- Jennifer MacKenzie
- Title
- Treasurer
- Signed
- 2026-01-24
- Discuss with paid preparer
- Yes
Preparer
- Firm
- W Stevens LLP
- Address
- 9485 E 191st St, Noblesville, IN 46060
- Preparer
- Wendy Stevens CPA
- Phone
- 3172819063
Supplemental Narrative
Additional Explanations
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”
Raw XML Appendix203 raw XML fields
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
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| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 0 | 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. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 1 | 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. |
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| ReturnHeader/BusinessOfficerGrp/SignatureDt | 0 | 2026-01-24 |
| ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt | 0 | Spinal CSF Leak Foundation |
| ReturnHeader/Filer/BusinessNameControlTxt | 0 | SPIN |
| ReturnHeader/Filer/EIN | 0 | 471141080 |
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| ReturnHeader/Filer/USAddress/AddressLine1Txt | 0 | 100 N Howard St Ste 5792 |
| ReturnHeader/Filer/USAddress/CityNm | 0 | Spokane |
| ReturnHeader/Filer/USAddress/StateAbbreviationCd | 0 | WA |
| ReturnHeader/Filer/USAddress/ZIPCd | 0 | 99201 |
| ReturnHeader/IRSResponsiblePrtyInfoCurrInd | 0 | true |
| ReturnHeader/PreparerFirmGrp/PreparerFirmEIN | 0 | 812852311 |
| ReturnHeader/PreparerFirmGrp/PreparerFirmName/BusinessNameLine1Txt | 0 | W Stevens LLP |
| ReturnHeader/PreparerFirmGrp/PreparerUSAddress/AddressLine1Txt | 0 | 9485 E 191st St |
| ReturnHeader/PreparerFirmGrp/PreparerUSAddress/CityNm | 0 | Noblesville |
| ReturnHeader/PreparerFirmGrp/PreparerUSAddress/StateAbbreviationCd | 0 | IN |
| ReturnHeader/PreparerFirmGrp/PreparerUSAddress/ZIPCd | 0 | 46060 |
| ReturnHeader/PreparerPersonGrp/PhoneNum | 0 | 3172819063 |
| ReturnHeader/PreparerPersonGrp/PreparerPersonNm | 0 | Wendy Stevens CPA |
| ReturnHeader/PreparerPersonGrp/SelfEmployedInd | 0 | X |
| ReturnHeader/ReturnTs | 0 | 2026-01-25T10:42:53-08:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990EZ |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2024-07-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2025-06-30 |
| ReturnHeader/TaxYr | 0 | 2024 |
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