What Spinal Csf Leak Canada Charitable Organization does

Spinal CSF Leak Canada is a Canadian national health charity (registered #717019681RR0001) founded to improve outcomes for patients with spontaneous intracranial hypotension (SIH) and spinal cerebrospinal fluid (CSF) leaks. The organization is 100% volunteer-run with 1–10 staff and operates across patient advocacy, public awareness, education, and research support. Its core stakeholder groups include affected patients and their caregivers, treating clinicians (neurology, anesthesia, interventional radiology), and researchers; the charity serves as the de facto national coordinator for this rare-disease community in Canada.

The charity's product and resource surface is primarily educational and community-facing rather than technology-centric. It distributes pamphlets, medical accommodation cards, and a quarterly case rounds program (since 2022), and has co-organized the Canadian SIH Conference in partnership with the University of Toronto (second edition in January 2025). It promotes the "Upright CSF Leak Tracker" patient app — developed by Dr. Andrew Callen at the University of Colorado and licensed/distributed by the charity — to help patients document positional symptom patterns. It has also funded an SIH patient registry housed at CHAMP Calgary and published the first Canadian national patient survey in the Canadian Journal of Neurological Sciences in 2023.

Revenue mechanics are donation-driven and highly distributed. The charity receives individual contributions (including via CanadaHelps), grants, and merchandise sales (e.g., awareness t-shirts at approximately CA$25). There is no enterprise sales motion, no subscription product, and no disclosed revenue figures; the volunteer-run cost structure suggests low operating overhead and reliance on partner institutions (e.g., University of Toronto) to absorb much of the conference and research infrastructure cost.

Name

Spinal Csf Leak Canada Charitable Organization

Legal name

Spinal Cerebrospinal Fluid (CSF) Leak of Canada

Website

https://spinalcsfleakcanada.ca

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

1–10 employees

Short description

Spinal CSF Leak Canada is a 100% volunteer-run national health charity that improves outcomes for Canadians affected by spontaneous intracranial hypotension through awareness, education, advocacy, and research support, including patient resources and the Upright CSF Leak Tracker app.

Ownership category

akta.pro rank

Headquarters

HQ city

Ottawa

HQ country

Canada

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others, Technology or R&D

Revenue model

1. Donations and Charitable Contributions: The organization is a registered Canadian charity (717019681RR0001) that relies entirely on tax-deductible donations from individuals to fund its mission of awareness, education, and research support.
2. Merchandise Sales: Sale of 'Stand Up For A Leaker' t-shirts at CA$25.00 to raise funds and awareness during Spinal CSF Leak Awareness Week.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels9 records

Core offering

Spinal CSF Leak Canada is a registered Canadian national health charity that supports patients with spontaneous intracranial hypotension (SIH) and spinal CSF leak through awareness campaigns, patient and caregiver education, accredited continuing medical education for clinicians, peer-to-peer fundraising, and financial support for the SIH Registry. Offerings are delivered primarily as free digital resources, free webinars and conferences, and awareness merchandise, funded by tax-deductible donations.

Product overview

Spinal CSF Leak Canada is a national health charity offering patient education resources, support materials, and awareness initiatives. The organization's portfolio includes the Upright: CSF Leak Tracker mobile application (developed by Dr. Andrew Callen), downloadable educational resources such as the Spinal CSF Leak Pamphlet and Medical Accommodation Card, video-based content including Patient Stories and Caregiver Testimonials, merchandise for awareness fundraising, and virtual/recorded educational conferences for both patients and healthcare professionals.

Differentiator

Problem solved

Functional benefit

Products and services

• Upright: CSF Leak Tracker App Mobile app for SIH/spinal CSF leak patients to track head pain, upright tolerance, and other symptoms daily through check-ins, view summary charts, run the 48-Hour Flat Test for diagnostic purposes, and export clinical summary reports to share with their care team. Developed by Dr. Andrew Callen (University of Colorado) and made available to patients through the Apple App Store.
• Spinal CSF Leak Pamphlet Downloadable brochure published by Spinal CSF Leak Canada with medically reviewed information on the symptoms, causes, diagnostic methods, and treatment options for spinal CSF leaks, including aftercare guidance. Distributed free of charge to patients and the broader Canadian public.
• Medical Accommodation Card Downloadable card designed for patients to present in public situations where lying down is required, briefly describing spinal CSF leak symptoms and the need for accommodation, and encouraging others to provide space to lie down. Made available free of charge via the charity's website.
• Stand Up For A Leaker T-Shirt Awareness t-shirt sold by Spinal CSF Leak Canada at CA$25.00 each during Spinal CSF Leak Awareness Week, with proceeds supporting the charity's mission of awareness, education, and research support for spinal CSF leak.

Quantifiable outcome

• 88% of patients with confirmed diagnosis consulted at least four healthcare providers before receiving an accurate diagnosis
• +9 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Ten partnerships are on record, tiered core, major and minor.

• University of Toronto - Department of Anesthesia and Pain MedicinecoreStrategic or Co-development Partner · 9 January 2025The 2nd Canadian SIH Conference was organized by Spinal CSF Leak Canada in affiliation with the Department of Anesthesia and Pain Medicine, University of Toronto. The conference was accredited through Continuing Professional Development, Temerty Faculty of Medicine, University of Toronto.
• Spinal CSF Leak Foundation (US)coreStrategic or Co-development PartnerInternational sister foundation partnership for coordinating annual Spinal CSF Leak Awareness Week. The organizations collaborate to give the awareness week international reach and share resources, expertise, and educational materials.
• CSF Leak Association (UK)coreStrategic or Co-development PartnerInternational sister foundation partnership for Spinal CSF Leak Awareness Week. The CSF Leak Association based in the UK collaborates with Spinal CSF Leak Canada to raise awareness globally and share resources.
• ILC Charitable FoundationmajorStrategic or Co-development PartnerPartnership for the 'Pain | Shedding Light on Inequities of Health' conference held November 7, 2020. The ILC Charitable Foundation co-hosted this event with Spinal CSF Leak Canada to address health disparities in pain management.
• Calgary Headache Assessment and Management Program (CHAMP)coreStrategic or Co-development PartnerSpinal CSF Leak Canada assisted in funding the Spontaneous Intracranial Hypotension Registry (SIH Registry Research) established by Dr. Farnaz Amoozegar and staff at CHAMP in Calgary, AB.
• FinchbloomminorOthersIT Conference Sponsor for the 2020 conference. Finchbloom is a Microsoft Gold Certified Cloud Services Provider and IT Professional Services firm.
• AGeneration PlusminorOthersEvent sponsor for the June 12, 2021 webinar on nationwide expert perspectives on access to care.
• Canada Legal ProminorOthersEvent sponsor for the June 12, 2021 webinar.
• SOK LLPminorOthersEvent sponsor for the June 12, 2021 webinar.
• STAXSHSminorOthersEvent sponsor for the June 12, 2021 webinar.

Scale indicators3 records

Regional players

• Migraine Canada: Canadian patient-advocacy charity for migraine and headache disorders with overlapping symptoms to SIH. Both are Canadian non-profits that rely on volunteer boards, educational resources, and awareness campaigns to support patients with debilitating neurological conditions.

Direct peers

• Spinal CSF Leak Foundation: The US-based sister organization explicitly partnered with Spinal CSF Leak Canada to coordinate the annual international Spinal CSF Leak Awareness Week. Both organizations share the same patient-advocacy mission, awareness events, and educational focus on spontaneous intracranial hypotension.
• CSF Leak Association: UK-based charity and sister foundation of Spinal CSF Leak Canada. Both organizations collaborate on international awareness and provide overlapping educational resources, support services, and patient advocacy for the same rare neurological condition.

Others

• Hydrocephalus Association: US-based patient-advocacy non-profit for hydrocephalus, a CSF-related neurological condition. Provides a comparable model of patient education, community support, research funding, and physician engagement for a disorder involving cerebrospinal fluid dynamics.
• American Migraine Foundation: US-based patient-advocacy organization focused on headache disorders that frequently overlap with spinal CSF leak symptoms. Operates a similar model combining patient education, physician CME, awareness campaigns, and research support.
• Concussion Legacy Foundation: Patient-advocacy organization focused on concussion and brain injury with comparable educational and awareness infrastructure, including patient stories, CME for clinicians, and research collaboration. Operates at significantly larger scale but follows a similar volunteer-amplified mission model.
• Dysautonomia International: Patient-advocacy non-profit for dysautonomia, which is frequently comorbid with SIH and addressed in Spinal CSF Leak Canada's webinars. Operates a comparable volunteer-driven model focused on awareness, physician education, and research funding for a related rare neurological condition.
• Chiari & Syringomyelia Foundation: Non-profit dedicated to Chiari malformation and syringomyelia, rare neurological conditions that share diagnostic and patient-education challenges with SIH. Operates a similar charity model with patient resources, awareness campaigns, and research funding.

Broad incumbents

• National Organization for Rare Disorders (NORD): Large US umbrella organization that advocates for patients with rare diseases, including neurological conditions like SIH. It serves as a comparable policy advocacy and patient-support model at much greater scale, representing the broader category in which Spinal CSF Leak Canada operates.

Market position

Strengths4 records

Weaknesses4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/spinalcsfleakcanada
• Xx.com/SpinalCSFCanada

Revenue estimate

Valuation estimate

Number of profiles

Profiles13 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Spinal Csf Leak Canada Charitable Organization