THE RYR-1 FOUNDATION
The RYR-1 Foundation is a Pittsburgh-based 501(c)(3) public charity founded in 2016 that serves as the sole patient advocacy organization for individuals and families affected by RYR-1-Related Diseases, funding research, publishing multilingual Clinical Care Guidelines, hosting international Family Conferences, and operating a Patient Registry globally.
- Company typePrivate
- Founded2014
- HeadquartersPittsburgh, United States
- Headcount1–10
- GTM typeB2B and B2C
- OfferingServices
What THE RYR-1 FOUNDATION does
The RYR-1 Foundation is a Pittsburgh-based, 501(c)(3) public charity founded in 2016 by the Goldberg Family to serve as the sole organization dedicated to advocating for patients and families affected by RYR-1-Related Diseases (RYR-1-RD) — a group of rare genetic conditions involving skeletal muscle calcium regulation that include malignant hyperthermia susceptibility, congenital myopathies, and rhabdomyolysis. It was created to fill a void, as the foundation states that no other organization existed solely to advocate for and serve this patient population at the time of founding.
The foundation's core offerings center on patient and research infrastructure rather than commercial products: a free, multilingual Clinical Care Guidelines resource available in 10+ languages (English, Spanish, Vietnamese, Chinese, French, German, Arabic, Russian, Brazilian Portuguese); international Family Conferences convening affected individuals, families, researchers, and medical professionals; a Research Grants Program funding investigator-led studies; a Patient Registry that aggregates affected-individual data for research use; Research Workshops for the scientific community; RYR-1-RD mice research models supporting preclinical studies; and a Video Gallery plus monthly newsletter for community education. It also participates in Rare Disease Week on Capitol Hill for federal advocacy.
The foundation is governed by a 9-member Board of Directors and supported by a Scientific Advisory Board that includes clinicians and researchers from the University Health Network, NIH/NINDS, and Neurocrine Biosciences. Co-founders Lindsay Goldberg, BSN, RN (Executive Director & Patient Liaison) and Dr. Michael F. Goldberg, MD, MPH (President, Board of Directors and Co-Chair of Research) lead day-to-day operations along with a single Program Manager. Revenue is generated exclusively through tax-deductible donations and fundraising activities (individual giving, end-of-year and GivingTuesday campaigns, hosted fundraisers, and corporate partnerships such as the Seattle Seahawks My Cause My Cleats campaign). All patient resources are provided free of charge, and the foundation works with affected families, researchers, biotech/pharma companies, and healthcare providers across the globe to facilitate communication, fund research, advance therapies, and optimize standards of care.
THE RYR-1 FOUNDATION firmographics
Firmographics- Name
- THE RYR-1 FOUNDATION
- Legal name
- The RYR-1 Foundation
- Website
- https://ryr1.org
- Company type
- Private
- Founded year
- 2014
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The RYR-1 Foundation is a Pittsburgh-based 501(c)(3) public charity founded in 2016 that serves as the sole patient advocacy organization for individuals and families affected by RYR-1-Related Diseases, funding research, publishing multilingual Clinical Care Guidelines, hosting international Family Conferences, and operating a Patient Registry globally.
- Ownership category
- akta.pro rank
THE RYR-1 FOUNDATION industry classification
Industry- Product category
- Rare Disease Patient Advocacy
- NAICS
- Voluntary Health Organizations (813212)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600)
- 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
Where THE RYR-1 FOUNDATION is headquartered
LocationHeadquarters
- HQ city
- Pittsburgh
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
THE RYR-1 FOUNDATION business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others, Technology or R&D
Revenue model
- Donations and Fundraising: As a 501(c)(3) non-profit public charity, the foundation generates revenue primarily through tax-deductible donations from individuals, families, and corporate sponsors. Fundraising activities include end-of-year giving campaigns, GivingTuesday campaigns, hosted fundraisers, and the My Cause My Cleats campaign partnership with Seattle Seahawks.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Others | Free access to all foundation resources |
Go-to-market motion1 record
Distribution channels2 records
Marketing channels6 records
THE RYR-1 FOUNDATION product offering
Product offeringCore offering
The RYR-1 Foundation is a non-profit patient advocacy organization that funds research, provides multilingual Clinical Care Guidelines, hosts International Family Conferences, operates a patient registry, runs research workshops, and delivers educational and support resources for patients and families affected by RYR-1-Related Diseases (RYR-1-RD). All patient-facing resources are provided free of charge, with operations sustained through donations, fundraising, and grants.
Product overview
The RYR-1 Foundation operates as a unified patient advocacy and research support organization rather than a platform-plus-modules product architecture. The foundation's core offerings center on the Clinical Care Guidelines (a free multilingual guide), the International Family Conferences, Research Grants Program, Patient Registry, Research Workshops, RYR-1-RD Mice research models, and the Video Gallery. These services collectively serve affected patients and families, researchers, biotech and pharmaceutical partners, and healthcare providers to facilitate communication, fund research, advance therapies, and optimize standards of care for RYR-1-Related Diseases.
Differentiator
Problem solved
Functional benefit
Products and services
- Clinical Care Guidelines A free, multilingual informative guide providing practical and accessible information for individuals and families affected by RYR-1-Related Diseases, covering care standards, disease management, and resources for patients, families, and healthcare providers. Available in 10+ languages including English, Spanish, Vietnamese, Chinese, French, German, Arabic, Russian, and Portuguese-BR.
- RYR-1 International Family Conferences International conferences bringing together affected individuals, families, researchers, and healthcare providers to share knowledge, build community, and advance understanding of RYR-1-Related Diseases. The foundation's homepage impact counter tracks the number of conferences hosted.
- RYR-1-RD Research Grants Program Grant program funding innovative research to advance treatments and cures for RYR-1-Related Diseases, including Individual Investigator Research Grant Awards supporting high-impact basic science and clinical research. Funded research has resulted in publications in Nature Communications and other peer-reviewed journals.
- RYR-1-RD Patient Registry A registry program enabling affected individuals to join and contribute data that supports research and connects the RYR-1-RD community. Patients enroll online to provide data that supports research, clinical trial recruitment, and the broader RYR-1-RD community.
- RYR-1-RD Research Workshops Periodic workshops convening researchers and scientists to discuss RYR-1-Related Disease research progress, share findings, and identify research priorities within the RYR-1-RD research community.
- RYR-1-RD Mice (Research Models) Animal models developed or utilized for RYR-1-Related Disease research, supporting preclinical studies and therapeutic development for the RYR-1-RD research community.
- Patient & Family Resources Comprehensive resource hub providing educational materials, support information, and guidance for individuals and families affected by RYR-1-Related Diseases, including information on genetic testing, locating providers, and disease management.
- Video Gallery Educational and informational video content related to RYR-1-Related Diseases, featuring patient stories, medical information, and educational presentations for the RYR-1-RD community.
- RYR-1 Foundation Monthly Newsletter Monthly digital newsletter keeping the RYR-1-RD community informed about research updates, events, advocacy opportunities, and foundation activities; available via email subscription.
Quantifiable outcome
- Provided over $6,675 raised through Seattle Seahawks My Cause My Cleats partnership
- +1 more outcomes
Companies that use THE RYR-1 FOUNDATION
Customer profileNamed customers3 records
Segments4 records
Ideal customer profiles4 records
THE RYR-1 FOUNDATION technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
THE RYR-1 FOUNDATION partnerships and signals
Strategic signalPartnerships
Eight partnerships are on record, tiered minor and core.
- Fly Penguins Fly PodcastminorThe foundation was featured on the Fly Penguins Fly Podcast in a special episode featuring community member Cody Hodgson, an NHL ice hockey player living with Malignant Hyperthermia caused by an RYR1 variant. The episode also featured Dr. Sheila Riazi, Dr. Michael Goldberg, and Lindsay Goldberg discussing RYR-1-RD research and community impact.
- Seattle Seahawks (Mike Macdonald)minorSeattle Seahawks Head Coach Mike Macdonald selected The RYR-1 Foundation as beneficiary for My Cause My Cleats campaign for the second consecutive year. The cause is personal to Coach Macdonald as his nephew Lucas lives with a RYR-1-RD. This partnership raised $6,675 for the foundation.
- Triage HealthminorTriage Health, an educational program of the nonprofit Triage Cancer, partners with the foundation to offer free webinars helping rare disease patients understand legal and practical aspects of navigating healthcare, including health insurance, disability benefits, employment rights, and medical bills.
- National Institutes of Health (NIH)coreNIH conducts an ongoing Natural History Study on RYR-1-Related Disorders (Research Study #001737-CC) led by Tokunbor A. Lawal, PhD, FNP-BC. The foundation encourages eligible patients to participate in this critical research. NIH's Dr. Joshua Todd also served as an investigator on early clinical trials for RYR1-related disorders.
- Radboud University Medical Centre (Radboudumc)minorDr. Nick Kruijt, a neurologist and researcher at Radboudumc in the Netherlands, published research on thermoregulation in individuals with RYR1-related malignant hyperthermia or exertional heat stroke. The study was funded by The RYR-1 Foundation.
- Neurocrine Biosciences Inc.minorJoshua J. Todd, PhD, MBA serves as Scientific Director, Clinical Development at Neurocrine Biosciences. Dr. Todd is a new member of the foundation's Scientific Advisory Board and brings expertise in clinical development for rare neuromuscular diseases.
- EveryLife FoundationminorThe foundation participates in Rare Disease Week on Capitol Hill organized by the EveryLife Foundation, using hashtag #RareDC2026 to join the advocacy conversation and connect with policymakers.
- NORD (National Organization for Rare Disorders)minorThe foundation highlights NORD's RareCare Patient Assistance Programs as a valuable resource for the rare disease community, helping individuals access medications, diagnostic testing, travel support, and financial assistance.
Scale indicators4 records
Recent moves6 records
Expansion highlights5 records
THE RYR-1 FOUNDATION competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): Umbrella rare-disease advocacy organization that the RYR-1 Foundation already partners with for RareCare Patient Assistance Programs. Operates as a federating body and policy advocate for rare disease communities.
- Muscular Dystrophy Association (MDA): Large incumbent neuromuscular disease advocacy organization that funds research, supports patients, and runs clinical care programs across multiple myopathies including RYR-1-related conditions. Directly comparable as a rare-neuromuscular disease funder and patient advocate.
- AANEM (American Association of Neuromuscular & Electrodiagnostic Medicine): Professional medical society supporting clinicians and researchers in neuromuscular medicine, including RYR-1-RD. Comparable as a convener of clinicians/researchers and source of clinical care standards in the same disease space.
Direct peers
- Malignant Hyperthermia Association of the United States (MHAUS): Patient advocacy organization dedicated to malignant hyperthermia—one of the RYR-1-RD phenotypes directly addressed by the RYR-1 Foundation. Sheila Riazi of the Foundation's SAB sits on MHAUS's board, evidencing close overlap.
- Rare Disease Foundation: Canadian-based rare disease advocacy and research funding organization that supports multiple rare diseases through community grants and partnerships. Comparable as a small-scale rare disease advocacy and research funder.
- AHC Foundation (Alternating Hemiplegia of Childhood): Family-driven ultra-rare disease advocacy organization that funds research, hosts conferences, and supports patients/families. Comparable as a small, family-led nonprofit serving a single ultra-rare genetic disease community.
- EveryLife Foundation: Public policy advocacy organization for the rare disease community that organizes Rare Disease Week on Capitol Hill, which the RYR-1 Foundation actively participates in. Both serve as advocacy and policy organizations for rare disease patients.
- CureSMA (Spinal Muscular Atrophy): Disease-specific rare neuromuscular advocacy organization that funds research, runs family conferences, and supports patient registries. Highly comparable operating model to the RYR-1 Foundation in serving a single rare disease community.
- Parent Project Muscular Dystrophy (PPMD): Family-founded rare disease advocacy organization supporting Duchenne muscular dystrophy patients with research funding, clinical care guidelines, and advocacy. Structurally and operationally very similar to the RYR-1 Foundation's model.
Others
- Triage Cancer: Nonprofit that provides free education on cancer and rare-disease legal, financial, and practical issues via webinars and resources. Directly comparable as the operator of the Triage Health program through which the RYR-1 Foundation delivers educational webinars.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights7 records
Customer concentration
THE RYR-1 FOUNDATION social profiles
Digital presenceTHE RYR-1 FOUNDATION financial estimates
Financial estimateRevenue estimate
Valuation estimate
THE RYR-1 FOUNDATION leadership team
Management profileNumber of profiles
Profiles12 records
THE RYR-1 FOUNDATION funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
THE RYR-1 FOUNDATION M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about THE RYR-1 FOUNDATION
What does THE RYR-1 FOUNDATION do?
The RYR-1 Foundation is a non-profit patient advocacy organization that funds research, provides multilingual Clinical Care Guidelines, hosts International Family Conferences, operates a patient registry, runs research workshops, and delivers educational and support resources for patients and families affected by RYR-1-Related Diseases (RYR-1-RD). All patient-facing resources are provided free of charge, with operations sustained through donations, fundraising, and grants.
Is THE RYR-1 FOUNDATION a public or private company?
THE RYR-1 FOUNDATION is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was THE RYR-1 FOUNDATION founded?
THE RYR-1 FOUNDATION was founded in 2014. It employs 1 to 10 people.
Where is THE RYR-1 FOUNDATION based?
THE RYR-1 FOUNDATION is headquartered in Pittsburgh, United States, in the North America region.
How does THE RYR-1 FOUNDATION make money?
One revenue line is on record: donations and Fundraising.
Who are THE RYR-1 FOUNDATION's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), Muscular Dystrophy Association (MDA) and AANEM (American Association of Neuromuscular & Electrodiagnostic Medicine). Direct peers are Malignant Hyperthermia Association of the United States (MHAUS), Rare Disease Foundation, AHC Foundation (Alternating Hemiplegia of Childhood), EveryLife Foundation, CureSMA (Spinal Muscular Atrophy) and Parent Project Muscular Dystrophy (PPMD). Triage Cancer is listed as an others.
Does THE RYR-1 FOUNDATION have an API?
No public API is recorded for THE RYR-1 FOUNDATION.
What industry is THE RYR-1 FOUNDATION in?
THE RYR-1 FOUNDATION's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8300.