SPINAL CSF LEAK FOUNDATION

Financials

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990-EZ for the year ended June 30, 2025, highest compensation first.

Address and contacts

Address (IRS master file)

100 N HOWARD ST STE 5792, SPOKANE, WA 99201-0508

Mailing address (990-N for 2016)

170 S Lincoln Su 100, Spokane WA 99201

Principal officer (990-N for 2016)

Connie Deline, 304 Blacklatch Lane, Camp Hill PA 17011

Signed the 990-EZ

Jennifer MacKenzie, Treasurer

Phone

(509) 676-4112

Website

https://spinalcsfleak.org

Return prepared by

W Stevens LLP

Mission

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 accomplishments

• 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.
  Expenses $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.
  Expenses $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.
  Expenses $4,697

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in June, so each return is due on the 15th day of the 5th month after that.

IRS record

EIN

47-1141080

Tax-exempt status

501(c)(3): Charitable, religious, educational or scientific organization

Foundation status

Publicly supported organization (509(a)(2))

Donations deductible (Pub 78)

Public charity, 50% deduction limit

Exempt since

2014

Accounting year ends

June

Files

Form 990 or 990-EZ

Category (NTEE)

Voluntary health associations and medical disciplines (G01)

Assets (IRS master file)

$353,170

Income (IRS master file)

$117,854

Filing history

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 47-1141080).

Questions about SPINAL CSF LEAK FOUNDATION

What is the EIN of SPINAL CSF LEAK FOUNDATION?

The employer identification number (EIN) of SPINAL CSF LEAK FOUNDATION is 47-1141080.

Is SPINAL CSF LEAK FOUNDATION tax-exempt?

Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2014.

Are donations to SPINAL CSF LEAK FOUNDATION tax-deductible?

Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).

Which annual return does SPINAL CSF LEAK FOUNDATION file?

Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.

When is the next return of SPINAL CSF LEAK FOUNDATION due?

The return for tax year 2025 (the year ending June 30, 2026) is due November 16, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.

When did SPINAL CSF LEAK FOUNDATION last file with the IRS?

The latest return in the IRS public files is the 990-EZ for the year ended June 2025.

Who is the principal officer of SPINAL CSF LEAK FOUNDATION?

The 990-N for 2016 names Connie Deline.

Who are the officers and directors of SPINAL CSF LEAK FOUNDATION?

The 990-EZ for the year ended June 30, 2025 lists 10 people; 2 received compensation from the organization, the highest $37,398 (Jennifer MacKenzie, Executive Dir.).

How much revenue does SPINAL CSF LEAK FOUNDATION have?

On its 990-EZ for the year ended June 30, 2025 it reported revenue of $117,854, expenses of $120,953 and total assets of $353,170 at year end.

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