What CureGRIN Foundation does

CureGRIN Foundation is a 501(c)(3) public charity founded in 2019 by parents of children with GRI Disorders (genetic variants in ionotropic glutamate receptor genes, including GRIN, GRIA, GRIK, and GRID). The foundation's mission is to drive research toward treatments and cures while providing education and support to the global patient community. Its primary constituents are patient families, with secondary audiences of academic researchers, clinicians, and biopharma companies developing therapies for these rare neurodevelopmental conditions.

The foundation's core technology assets are patient data infrastructure rather than commercial products. The GRI Census is a global registry available in 11 languages capturing gene variants, symptoms, treatment priorities, and demographic data. The GRI Patient Registry runs deeper natural history data collection in partnership with University of Colorado, University of Leipzig, and Simons Searchlight. A public Research Roadmap Dashboard tracks progress against 10 essential research questions. CureGRIN supplements these with educational programs (GRI in 10 Days course, science basics, glossary), a 100+ story patient narrative library, an annual GRICON conference, monthly Community Chats, and an ambassador network of 50+ volunteers across 12+ countries and 20+ U.S. states. Research grantmaking is a core function: the foundation has awarded over $1.3 million cumulatively, including a $450,000 CZI grant in 2020 and a $652,500 grant cycle in 2023.

CureGRIN's revenue model is donation-driven across multiple streams: individual giving (including a recurring CureGRIN Champions program at $25/month+ and seven one-time donation tiers up to $100K+), charitable grants from foundations and rare-disease initiatives, branded merchandise via Bonfire, and book sales (Stories of GRI) on Amazon in 9+ countries. Distribution is primarily digital (website, REDCap-hosted surveys, Constant Contact newsletter, social channels across Facebook, Instagram, YouTube, LinkedIn, and X) with field reach through the global ambassador network. The foundation secured a dedicated ICD-10 code (QA0.011) for GRI Disorders effective October 2025 and engages biopharma sponsors (GRIN Therapeutics, Lundbeck, UCB, Praxis Precision Medicines) on clinical trial readiness, indicating a shift toward more formalized industry partnerships.

Name

CureGRIN Foundation

Legal name

CureGRIN Foundation

Website

https://curegrin.org

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

1–10 employees

Short description

CureGRIN Foundation is a 501(c)(3) patient advocacy nonprofit founded in 2019 that funds research, runs the global GRI Census patient registry in 11 languages, and supports families affected by ionotropic glutamate receptor (GRI) disorders worldwide.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (8132)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient registry services
• Genetic disorder research
• Family support programs
• Medical research grants

Headquarters

HQ city

Parker

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: One-time and recurring donations from individual supporters. The CureGRIN Champions program offers monthly giving at various levels ($25/month+ with branded merchandise incentive). Donor levels range from Friend of CureGRIN ($1-$499) to Visionary Circle ($100,000+).
2. Charitable Grants: Research grants from foundations and initiatives. Notable grants include $450,000 from Chan Zuckerberg Initiative (CZI), $200,000 in 2025 research funding announcements, and $652,500 awarded in 2023 research grants.
3. Merchandise Sales: Sale of branded merchandise (apparel, accessories) through Bonfire storefront. Charity give-back programs with partners including Billy Footwear (15% donation) and other affiliate programs.
4. Book Sales: Sale of 'Stories of GRI' e-book and paperback available through Amazon in multiple countries (US, UK, Canada, Germany, Spain, Italy, France, Australia, Netherlands).

Pricing tiers

Go-to-market motion3 records

Distribution channels6 records

Marketing channels10 records

Core offering

CureGRIN Foundation is a nonprofit patient advocacy organization dedicated to GRI Disorders (ionotropic glutamate receptor genetic disorders). It operates the global GRI Census and GRI Patient Registry to collect natural history data, awards research grants to advance therapeutics, hosts the annual GRICON conference, and delivers family support and educational programs including New Family Orientation and the "GRI in 10 Days" course.

Product overview

CureGRIN Foundation is a patient advocacy and research foundation focused on GRI Disorders (ionotropic glutamate receptor disorders affecting GRIA/AMPA, GRID/Delta, GRIK/Kainate, and GRIN/NMDA receptor genes). The organization does not offer a technology product; instead it provides educational resources, patient registries (GRI Census, GRI Registry), family support programs (ambassador networks, support groups, community chats), research funding and coordination, conferences (GRICON), and awareness materials. Core offerings include the GRI Census (global patient registry), educational courses (GRI in 10 Days), Stories of GRI (e-book and paperback), physician directories, and annual conferences. The foundation drives research through grant funding, research roadmap development, and partnerships with biotechnology and pharmaceutical companies developing treatments.

Differentiator

Problem solved

Functional benefit

Products and services

• GRI Census

Quantifiable outcome

• 150 families representing 10 genes and 16 countries completed the GRI Census within one week of launch
• +1 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

13 partnerships are on record, tiered core and minor.

• Emory University School of MedicinecoreStrategic or Co-development Partner · 1 January 2019Researchers at Emory University are generating iPSC lines from children with GRIN mutations and using these for 3-D brain organoid disease modeling and therapeutic compound screening. Emory hosted the world's first global academic conference on GRIN Disorder in September 2019.
• Simons SearchlightcoreStrategic or Co-development Partner · 1 January 2010CureGRIN is partnered with Simons Searchlight, a research program focused on understanding genetic neurodevelopmental conditions. Simons Searchlight has been the foundation's trusted research partner since 2010, collecting complementary registry data and facilitating genetic research.
• Global Genes FoundationminorOthersCureGRIN is listed as a partner organization with Global Genes, a leading rare disease advocacy organization.
• National Organization for Rare Disorders (NORD)coreOthersCureGRIN is an official Platinum member of NORD, providing access to advocacy resources, policy support, and the broader rare disease community network.
• University of LeipzigcoreStrategic or Co-development PartnerDr. Johannes Lemke and team at Leipzig University Hospital's Institute of Human Genetics conduct GRI Registry data collection for Europe, Asia, and Africa. Also conducting facial recognition research to identify subtle facial similarities among individuals with GRI-related disorders.
• University of Colorado (Drs. Kristen Park and Tim Benke)coreStrategic or Co-development PartnerUniversity of Colorado researchers conduct GRI Registry data collection for North America, South America, and Australia. Study approved by COMIRB (16-1520).
• GRIN TherapeuticscoreOthersBiopharmaceutical company running clinical trials for GRIN Disorders. CureGRIN leadership met with them at American Epilepsy Society meeting to discuss clinical trial readiness.
• LundbeckcoreOthersBiopharmaceutical company engaged with CureGRIN at American Epilepsy Society meeting regarding clinical trials for GRI Disorders.
• UCBcoreOthersBiopharmaceutical company engaged with CureGRIN at American Epilepsy Society meeting regarding clinical trials for GRI Disorders.
• Praxis Precision MedicinescoreOthersBiopharmaceutical company engaged with CureGRIN at American Epilepsy Society meeting regarding clinical trials for GRI Disorders.
• COMBINEDBrain ConsortiumcoreStrategic or Co-development PartnerCureGRIN is a member of COMBINEDbrain, a consortium accelerating therapy development for neurodevelopmental disorders by sharing data, models, and expertise across member organizations.
• Dr. Bayat (Filadelfia)minorStrategic or Co-development PartnerDr. Bayat's registry collects clinical data specifically for GRIA variants, complementing the broader GRI Registry efforts. Contact: [email protected]
• Billy FootwearminorGTM or Marketing PartnerAdaptive footwear company that donates 15% of purchases to CureGRIN when customers shop through their affiliate link.

Scale indicators7 records

Recent moves6 records

Expansion highlights7 records

Direct peers

• GRIN Therapeutics: Biopharmaceutical company developing precision medicines for GRIN Disorders. As a direct clinical trial partner, GRIN Therapeutics relies on the same patient population CureGRIN serves, making them the most direct comparator in the GRI Disorder ecosystem.
• Simons Searchlight: Research program collecting registry data on genetic neurodevelopmental conditions and a CureGRIN partner since 2010. Operates a similar patient registry model for overlapping populations, making it the closest functional peer.
• COMBINEDBrain: Consortium accelerating therapy development for neurodevelopmental disorders, of which CureGRIN is a member. Shares data, models, and expertise across member organizations, making it a direct functional peer in the rare neuro disorder space.
• Cure SMA: Disease-specific nonprofit driving research and patient support for spinal muscular atrophy. Operates a comparable model of patient registry, research funding, family support, and pharma partnership for a single rare genetic disease.
• Tuberous Sclerosis Alliance: Rare genetic disorder nonprofit combining research funding, patient registries, family support programs, and pharma engagement. Strong functional parallel to CureGRIN in scope and operating model.
• Phelan-McDermid Syndrome Foundation: Patient advocacy foundation for a rare genetic neurodevelopmental disorder running a patient registry, research grants, family conferences, and pharma partnerships. Highly comparable operating model to CureGRIN.
• Foundation for Prader-Willi Research: Parent-founded nonprofit funding research and supporting families affected by a rare genetic neurodevelopmental disorder. Closely matches CureGRIN's origin, operating model, and stakeholder mix.
• SLC6A1 Connect: Parent-led patient advocacy organization for a single rare genetic neurological disorder, running a patient registry, research grants, and pharma partnerships. Direct small-scale model peer to CureGRIN.

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest U.S. rare disease umbrella organization, of which CureGRIN is a Platinum Member. Operates broadly across all rare diseases rather than specializing in GRI Disorders, but is highly comparable in advocacy and policy function.
• Global Genes Foundation: Leading rare disease advocacy organization that lists CureGRIN as a partner. Operates a broader rare disease mission rather than focusing on GRI specifically, making it a broad incumbent peer.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/CureGrin
• YouTubeyoutube.com/channel/UCYTw0SlU7qNH-G85KD-PXyQ
• Facebookfacebook.com/cureGRIN
• LinkedInlinkedin.com/company/curegrin
• Instagraminstagram.com/curegrin_foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about CureGRIN Foundation