MCT8-AHDS Foundation
The MCT8-AHDS Foundation is a U.S.-based 501(c)(3) nonprofit and the first worldwide patient-led organization supporting families affected by MCT8 deficiency (Allan-Herndon-Dudley syndrome), an ultra-rare X-linked genetic disorder serving approximately 320 diagnosed patients globally through grants, awareness, and research advocacy.
- Company typePrivate
- Founded2018
- HeadquartersUnited States, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What MCT8-AHDS Foundation does
The MCT8-AHDS Foundation is a U.S.-based 501(c)(3) nonprofit organization and the first worldwide patient-led organization dedicated to supporting families affected by MCT8 deficiency (also known as Allan-Herndon-Dudley syndrome), an ultra-rare X-linked genetic neurological disorder that predominantly affects boys and impairs mobility, cognition, and general health. Founded in 2017-2018 with the support of the Sherman Foundation and headquartered in Tahlequah, Oklahoma, the foundation operates with a 100% volunteer model staffed by parents of affected children and serves an estimated ~320 diagnosed patients globally. Its core activities include a direct Grants Program (distributing upwards of $7,000 annually for equipment, therapies, and emergency needs), awareness initiatives led by the annual World MCT8-AHDS Day on October 8th, peer support via private community platforms, a physician contact network spanning institutions such as Erasmus MC and the University of Chicago, and educational resources covering clinical trials, diagnostic protocols, treatment options, and assistive equipment.
The foundation does not develop technology products; instead it operates as an information and support platform built around curated content for families and clinicians, published newsletters from research partners, and community-driven communication channels including private Facebook groups and webinars. Its underlying technology footprint is minimal — a multilingual website (English and Spanish), a Stripe-integrated donation flow, and standard third-party cookies.
The business model is donation-only: the foundation raises funds from individuals, organizations, and supporters via one-time or recurring contributions processed through Stripe, then redeploys those funds into grants, awareness programming, and community infrastructure. It holds membership in EURORDIS (Rare Disease Europe) and association with Rare Diseases International, and operates a strategic research partnership with Erasmus MC, University Medical Center Rotterdam, which runs the Triac Trial II. Monetization, distribution, and marketing are entirely community-led rather than commercial.
MCT8-AHDS Foundation firmographics
Firmographics- Name
- MCT8-AHDS Foundation
- Legal name
- MCT8-AHDS Foundation
- Website
- https://mct8.info
- Company type
- Private
- Founded year
- 2018
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The MCT8-AHDS Foundation is a U.S.-based 501(c)(3) nonprofit and the first worldwide patient-led organization supporting families affected by MCT8 deficiency (Allan-Herndon-Dudley syndrome), an ultra-rare X-linked genetic disorder serving approximately 320 diagnosed patients globally through grants, awareness, and research advocacy.
- Ownership category
- akta.pro rank
MCT8-AHDS Foundation industry classification
Industry- Product category
- Rare Disease Patient Advocacy
- NAICS
- Other Individual and Family Services (624190), Voluntary Health Organizations (813212), Services for the Elderly and Persons with Disabilities (624120)
- SIC
- Services-Social Services (8300), Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industries
- Neurogenetics & Rare Neurologic Diseases (HLAKAIAO), Genetic & Genomic Rare Disease Therapeutics (HLAIAIAA)
Keywords
Where MCT8-AHDS Foundation is headquartered
LocationHeadquarters
- HQ city
- United States
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
MCT8-AHDS Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Others
Revenue model
- Donations: The foundation operates entirely on donations from individuals, organizations, and supporters. Donations are processed via Stripe payment integration and can be one-time or recurring monthly contributions.
Go-to-market motion1 record
Distribution channels2 records
Marketing channels6 records
MCT8-AHDS Foundation product offering
Product offeringCore offering
The MCT8-AHDS Foundation is a 501(c)(3) non-profit patient advocacy organization supporting families affected by MCT8 deficiency (Allan-Herndon-Dudley syndrome), an ultra-rare genetic X-linked neurological disorder. It provides an annual Grants Program (upwards of $7,000/year) to help families purchase medical equipment and therapies, raises global awareness through World MCT8-AHDS Day (October 8th), connects families with specialized physicians worldwide, and disseminates educational resources on diagnosis, therapies, equipment, clinical trials, and treatment options.
Product overview
MCT8-AHDS Foundation is a non-profit 501(c)(3) organization that does not offer a commercial technology product. The foundation provides support services to families affected by MCT8 deficiency (Allan-Herndon-Dudley syndrome), including an annual Grants Program (upwards of $7,000/year for equipment and therapies), the World MCT8-AHDS Day awareness event on October 8th, Erasmus MC newsletters with research updates, a physician contact network connecting families with specialized medical experts worldwide, and educational resources on therapies, equipment, clinical trials, diagnostic protocols, and treatment options. The organization operates primarily as an informational and support platform rather than a technology product.
Differentiator
Problem solved
Functional benefit
Products and services
- Grants Program Annual grants program providing up to $7,000 per year to assist families affected by MCT8 deficiency with purchasing equipment (walkers, hoists, bathchairs) and therapies (physiotherapy, occupational therapy, hippotherapy), plus emergency grants for hospitalizations and funerals.
- World MCT8-AHDS Day Annual global awareness event held on October 8th to raise public awareness of MCT8 deficiency, recognize the patient community, and advocate for affected families worldwide.
- Erasmus MC Newsletters
- Physician Contact Network Directory of specialized medical centers and physicians worldwide experienced in MCT8-AHDS diagnosis and treatment, connecting families with key experts at institutions such as University of Chicago, Erasmus MC Rotterdam, and hospitals across Europe and the United States.
- Behind the Mystery TV Feature Television feature on the Behind the Mystery segment of The Balancing Act on Lifetime Television, raising national awareness of MCT8 deficiency and the foundation's work.
Companies that use MCT8-AHDS Foundation
Customer profileNamed customers1 record
Segments1 record
Ideal customer profiles2 records
MCT8-AHDS Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration1 record
MCT8-AHDS Foundation partnerships and signals
Strategic signalPartnerships
Three partnerships are on record, tiered core.
- Erasmus MCcoreErasmus MC, University Medical Center Rotterdam, is a key research partner. They publish newsletters on MCT8 deficiency, conduct clinical trials (including the Triac Trial), and Dr. Edward Visser serves as a primary contact for European families seeking medical guidance.
- EURORDIScoreMCT8-AHDS Foundation is a member of Eurordis Rare Disease of Europe and holds associate membership of EURORDIS, connecting the foundation with the broader rare disease community across Europe.
- Rare Diseases InternationalcoreListed as a quick link on the foundation website, indicating formal association with Rare Diseases International.
Scale indicators4 records
Recent moves6 records
Expansion highlights5 records
MCT8-AHDS Foundation competitors and assessment
Company assessmentBroad incumbents
- EURORDIS - Rare Diseases Europe: European umbrella for rare disease patient organizations. MCT8-AHDS is a member/associate; EURORDIS is a direct ecosystem counterpart and coordination body that aggregates groups like this foundation.
- National Organization for Rare Disorders: Broad US umbrella organization representing ~300 rare disease patient advocacy groups. Comparable as an umbrella for the rare disease nonprofit ecosystem, though it is not a single-disease foundation like MCT8-AHDS.
Direct peers
- Cure SMA: Large US rare disease patient foundation funding research, family support, and advocacy for spinal muscular atrophy. Closely comparable operating model: volunteer-led origins, family-driven grants, deep pharma trial partnerships, and one-disease focus.
- Angelman Syndrome Foundation: Foundation supporting research and family services for Angelman syndrome, a rare neurodevelopmental disorder with a single-gene mechanism. Comparable in disease category, grant program, and active engagement with gene-therapy clinical trials.
- Rett Syndrome Research Trust: Foundation supporting research and families affected by Rett syndrome, an X-linked neurodevelopmental disorder. Highly comparable in disease archetype (X-linked genetic neurological disorder), patient population size, and patient-led nonprofit model.
- FOXG1 Research Foundation: Parent-led foundation for FOXG1 syndrome, another ultra-rare pediatric neurodevelopmental genetic disorder. Comparable in mission, scale, patient population size (low hundreds to low thousands), and family-driven operating model.
- AHC Foundation (Alternating Hemiplegia of Childhood): Parent-led foundation supporting the ultra-rare Alternating Hemiplegia of Childhood disorder. Comparable in patient population size, focus on a pediatric neurogenetic disorder, and family-driven funding and research partnership model.
- Pitt Hopkins Research Foundation: Ultra-rare X-linked neurodevelopmental disorder foundation supporting families and research. Directly comparable as a small, parent-driven, single-gene pediatric neurology foundation with global outreach and conference-based awareness events.
- LAM Foundation: Patient-driven foundation funding research for lymphangioleiomyomatosis, another ultra-rare disease. Comparable in single-disease focus, parent/family origins, and partnership model with academic medical centers.
Others
- Rare Diseases International: Global alliance of rare disease patient organizations. MCT8-AHDS lists Rare Diseases International as a partner; it is a peer/ecosystem organization that aggregates national alliances and disease-specific foundations like MCT8-AHDS.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat3 records
Key risks6 records
Key highlights6 records
Customer concentration
MCT8-AHDS Foundation social profiles
Digital presenceMCT8-AHDS Foundation compliance and trust
Trust signalCompliance2 records
MCT8-AHDS Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
MCT8-AHDS Foundation leadership team
Management profileNumber of profiles
Profiles1 record
MCT8-AHDS Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
MCT8-AHDS 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 MCT8-AHDS Foundation
What does MCT8-AHDS Foundation do?
The MCT8-AHDS Foundation is a 501(c)(3) non-profit patient advocacy organization supporting families affected by MCT8 deficiency (Allan-Herndon-Dudley syndrome), an ultra-rare genetic X-linked neurological disorder. It provides an annual Grants Program (upwards of $7,000/year) to help families purchase medical equipment and therapies, raises global awareness through World MCT8-AHDS Day (October 8th), connects families with specialized physicians worldwide, and disseminates educational resources on diagnosis, therapies, equipment, clinical trials, and treatment options.
Is MCT8-AHDS Foundation a public or private company?
MCT8-AHDS Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was MCT8-AHDS Foundation founded?
MCT8-AHDS Foundation was founded in 2018. It employs 1 to 10 people.
Where is MCT8-AHDS Foundation based?
MCT8-AHDS Foundation is headquartered in United States, United States, in the North America region.
How does MCT8-AHDS Foundation make money?
One revenue line is on record: donations.
Who are MCT8-AHDS Foundation's main competitors?
Broad incumbents on record are EURORDIS - Rare Diseases Europe and National Organization for Rare Disorders. Direct peers are Cure SMA, Angelman Syndrome Foundation, Rett Syndrome Research Trust, FOXG1 Research Foundation, AHC Foundation (Alternating Hemiplegia of Childhood), Pitt Hopkins Research Foundation and LAM Foundation. Rare Diseases International is listed as an others.
Does MCT8-AHDS Foundation have an API?
No public API is recorded for MCT8-AHDS Foundation.
What industry is MCT8-AHDS Foundation in?
MCT8-AHDS Foundation's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of HLAKAIAO, Neurogenetics & Rare Neurologic Diseases. Its NAICS code is 624190 and its SIC code is 8300.