CJD Foundation, Inc.

What CJD Foundation, Inc. does

CJD Foundation, Inc. is a 501(c)(3) nonprofit headquartered in Akron, Ohio that serves individuals and families affected by prion disease, including Creutzfeldt-Jakob Disease. The foundation's service portfolio centers on a HelpLine, peer support groups, an annual Family Conference (scheduled for July 2026 in Chicago), a research-grant program (approximately $900,000 awarded in 2026), and advocacy on behalf of patients and families. It also convenes professional segments including medical, funeral, hospice, and genetic-counselor communities to improve awareness and care quality.

The foundation runs Strides for CJD, a grassroots community fundraising program that has expanded to more than 20 U.S. locations and engaged over 2,000 participants. Revenue mechanics rely on individual donations, community-driven event fundraising, merchandise sales, and corporate matching gifts; the foundation has maintained Charity Navigator's 4-star rating for five consecutive years, supporting donor confidence. Operationally the organization runs with a lean staff of approximately five employees, supplemented by volunteers, which constrains overhead but also limits the pace of programmatic scaling.

Strategically, the foundation has moved into translational research co-sponsorship, partnering with the Broad Institute on a first-in-human PrP-siRNA clinical trial and with Ionis Pharmaceuticals on the PrProfile study evaluating Regimen 3. These collaborations position CJD Foundation as a bridge between affected families and the academic/biotech pipeline, broadening its role beyond traditional patient advocacy into clinical-research enablement within the rare prion disease segment.

Name

CJD Foundation, Inc.

Legal name

CJD Foundation Inc.

Website

https://cjdfoundation.org

Company type

Private

Founded year

1993

Operating status

Operating

Headcount range

1–10 employees

Short description

CJD Foundation is a 501(c)(3) nonprofit supporting individuals and families affected by prion disease, including Creutzfeldt-Jakob Disease. It operates a HelpLine, support groups, an annual family conference, research grants, and Strides for CJD community fundraising events across the United States.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Prion disease support
• Rare disease advocacy
• Family caregiver services
• Patient support services
• Medical research funding

Headquarters

HQ city

Akron

HQ country

United States

HQ region

North America

Offices1 record

Markets served

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations: Tax-deductible donations from individuals, families, and supporters to fund family support programs, medical education, and research grants
2. Merchandise Sales: Online store selling awareness merchandise, T-shirts, bracelets, and other items to raise funds and awareness
3. Corporate Matching Gifts: Corporate matching gift programs where employers match employee donations to amplify contributions

Go-to-market motion2 records

Distribution channels5 records

Marketing channels8 records

Core offering

The CJD Foundation, Inc. is a 501(c)(3) nonprofit organization dedicated to supporting families affected by Creutzfeldt-Jakob Disease (CJD) and other human prion diseases. The foundation delivers direct patient and family support services (including a HelpLine, family liaison, and an annual family conference), funds prion disease research through grants, educates medical professionals about prion disease, and advocates on behalf of the prion disease community.

Product overview

The CJD Foundation is a non-profit organization offering a comprehensive suite of support services for families affected by prion diseases. The core offerings include a 7-day HelpLine, support groups, educational webinars, an Annual Family Conference, and a research grant program funding international prion disease research. Additional programs include advocacy efforts, the Memory Quilt tribute program, Strides for CJD awareness events, medical education for healthcare professionals, and family fundraising support resources.

Differentiator

Problem solved

Functional benefit

Brands

• Strides for CJD: Annual fundraising and awareness event with multiple locations across the United States

Products and services

• CJD HelpLine Telephone-based support service for patients, family members, and caregivers affected by CJD and other prion diseases, providing information, emotional support, and referrals.
• Family Support Program Direct support services for families impacted by prion disease, including liaison assistance, resource connection, and ongoing care navigation throughout the disease course.
• Annual CJD Family Conference Yearly in-person gathering for prion disease families, featuring medical updates, support sessions, and community connection for patients, caregivers, and bereaved family members.
• Research Grant Program Funding mechanism that awards grants to scientific investigators conducting research into CJD and other human prion diseases to advance understanding, diagnosis, and treatment.
• Medical Education Program Educational resources and programming that trains healthcare professionals on the recognition, diagnosis, and care of patients with prion disease.
• Advocacy Program Policy and awareness advocacy efforts on behalf of the prion disease community, engaging legislators, regulators, and public health bodies.
• Strides for CJD Community awareness and fundraising walk events held in locations around the country to raise visibility of CJD and generate support for the foundation's mission.

Quantifiable outcome

• Nearly $900,000 in research grants awarded to international prion disease researchers
• +1 more outcomes

Named customers1 record

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

Seven partnerships are on record, tiered core, major and moderate.

• Broad InstitutecoreStrategic or Co-development PartnerBroad Institute and CJD Foundation announced launch of first-in-human clinical trial of PrP-siRNA, a divalent siRNA drug candidate administered intrathecally to reduce prion protein production in the brain. This represents a significant advancement in prion disease treatment research.
• Ionis PharmaceuticalscoreStrategic or Co-development PartnerIonis Pharmaceuticals announced addition of Regimen 3 to the PrProfile study for prion disease. CJD Foundation shared community updates about this clinical trial advancement with families.
• Centers for Disease Control and Prevention (CDC)coreOthersCDC provides grant funding to CJD Foundation and funds the National Prion Disease Pathology Surveillance Center which supports CJD surveillance. The website was made possible in part by a grant from CDC.
• National Prion Disease Pathology Surveillance CentercoreOthersThe Surveillance Center, funded through CDC, provides diagnostic support and autopsy programs for prion disease cases. CJD Foundation advocates for continued CDC funding to support this critical program.
• Scientists, Clinicians, and Medical CentersmajorStrategic or Co-development PartnerCJD Foundation collaborates with scientists, clinicians, and medical centers to advance prion disease research and provide expert connections for families seeking second opinions and medical guidance.
• Health Authorities and Professional OrganizationsmoderateOthersCJD Foundation works with health authorities and professional organizations to educate medical professionals about prion disease diagnosis and handling protocols.
• International Patient AssociationsmoderateGTM or Marketing PartnerCJD Foundation collaborates with international patient associations to share information and resources across borders, supporting the global prion disease community.

Scale indicators7 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• ALS Association: U.S. patient-services and research-grant nonprofit for another rapidly progressive, fatal neurodegenerative disease. It is a close operational analogue: multi-channel family support, national walk events (Walk to Defeat ALS), peer-reviewed research grants, advocacy, and Charity Navigator-rated financials, and serves as a model CJD Foundation could scale toward.
• CJD Support Network (UK): UK-based patient organization serving families affected by all forms of CJD and other prion diseases. CJD Foundation's Scientific Advisory Committee includes the Network's Chair (Richard Knight), and the two organizations share resources, support materials, and clinical referrals across the U.S./U.K. prion community—making it the most directly comparable peer.
• Prion Alliance: Nonprofit focused on genetic prion disease—particularly GSS and FFI—and on accelerating therapeutic development. It directly overlaps with CJD Foundation's Genetic Prion Disease support group, research grant funding priorities, and clinical trial communications, and represents a focused counterpart in the same disease niche.
• Huntington's Disease Society of America: U.S. nonprofit supporting families with Huntington's disease—a rare, fatal, hereditary neurodegenerative disorder. Shares the same family support, genetic-counseling, peer support groups, advocacy, and research-grant operating model, making it one of the closest functional analogues to CJD Foundation.
• Muscular Dystrophy Association (MDA): Large U.S. nonprofit funding research and providing multidisciplinary care and family services across a portfolio of rare neuromuscular diseases. Comparable in scale, fundraising model (events + donations), and multi-disease research grant structure, even though its clinical focus differs.

Broad incumbents

• Michael J. Fox Foundation for Parkinson's Research: Largest nonprofit funder of Parkinson's research globally, with a model of high-dollar competitive research grants, biotech partnerships, and direct clinical-trial community engagement. Although broader in scope, it is a relevant structural peer for how CJD Foundation could evolve its research-grant and drug-development intermediary role over time.
• National Organization for Rare Disorders (NORD): Umbrella organization representing the U.S. rare disease community. While not a direct disease-specific peer, it provides the policy advocacy, research-grant infrastructure, and umbrella support that disease-specific groups like CJD Foundation both rely on and are benchmarked against.
• Alzheimer's Association: Largest U.S. nonprofit dedicated to a neurodegenerative disease, with an extensive family-services HelpLine, research-grant program, advocacy day on Capitol Hill, and a national Walk to End Alzheimer's event series. It is a structural analogue for how a rare-disease foundation can scale into a mass-market awareness and fundraising organization.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/CJDFoundation
• YouTubeyoutube.com/@cjdfoundation
• Facebookfacebook.com/CJDFoundation
• LinkedInlinkedin.com/company/cjd-foundation

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about CJD Foundation, Inc.