What The Dion Foundation does

The Dion Foundation for Children with Rare Diseases is a Massachusetts-incorporated 501(c)(3) nonprofit (Federal Tax ID: 92-2280592) founded in 2023 by Joe and Courtney Dion after their two children were diagnosed with Limb-Girdle Muscular Dystrophy Type 2C (LGMD2C/R5), an ultra-rare, progressive pediatric neuromuscular disease affecting an estimated 2,000 people across the US and Europe. The foundation's core mission is funding the first-ever US clinical trial of a disease-modifying gene therapy for LGMD2C through a flagship partnership with Atamyo Therapeutics, to which it has committed over $1,000,000 in community-raised capital to deploy the first US clinical trial site at the Powell Gene Therapy Center, University of Florida. It does not develop the therapy itself; the funded asset, ATA-200, is an adeno-associated virus (AAV) gene therapy carrying the human SGCG transgene, administered as a single intravenous infusion at a dose of 1.0E+14 vg/kg in children aged 6 to 13.

The foundation's commercial model is community-driven donation fundraising layered with event-based experiential revenue and merchandise. It operates a digital donation storefront at thedionfund.org supporting one-time, weekly, monthly, quarterly, and annual gifts at preset tiers from $25 to $1,000 plus custom amounts, a branded merchandise store with items priced from $15 to $55, and a portfolio of annual events including a charity golf tournament with corporate sponsorships up to $5,000, a 5K run/walk, Boston and Chicago Marathon charity teams with $10,000-per-runner minimums, a casino cruise, and a Discovery Channel partnership via co-founder Joe Dion on 'Harpoon Hunters'. Distribution is primarily direct-to-consumer through the foundation's own e-commerce site plus the GiveGain and FlipCause platforms.

The foundation serves three identifiable stakeholder groups: affected LGMD2C patient families (currently anchored by three partner families: the Dions, Baileys, and Colellas, encompassing six named pediatric patients), individual and corporate donors and volunteers, and the broader rare disease advocacy community engaged through MassBio, BIO, and STAT News channels for legislative work on the Rare Pediatric Disease Priority Review Voucher Program and the Give Kids a Chance Act. It also runs a HIPAA-compliant patient registry and a Patient Community Board launching in 2026. The organization is governed by a Board of Directors and a small team led by Co-Founders Joe and Courtney Dion, with a Fundraising Chair and Fundraising and Creative Director driving execution. As of March 2026, four patients had been dosed with ATA-200 with no serious adverse events and greater than 90% muscle fiber expression of the SGCG protein observed at six-month biopsy.

Name

The Dion Foundation

Legal name

The Dion Foundation for Children with Rare Diseases, Inc.

Website

https://thedionfund.org

Company type

Private

Founded year

2023

Operating status

Operating

Headcount range

1–10 employees

Short description

The Dion Foundation is a 501(c)(3) nonprofit founded in 2023 that funds gene therapy research and clinical trials for children with LGMD2C, a rare pediatric muscular dystrophy. It raises community donations, operates fundraising events, and co-funds the first US ATA-200 gene therapy trial through Atamyo Therapeutics.

Ownership category

akta.pro rank

Product category

Rare Disease Research Funding and Patient Advocacy

NAICS

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

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Global Health Financing Mechanisms & Pooled Funds (HLAJAOAC)

Keywords

• Rare disease research
• Nonprofit charitable foundation
• Gene therapy trials
• Patient advocacy services
• Community fundraising events

Headquarters

HQ city

Waltham

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The foundation raises funds through individual donations (one-time, weekly, monthly, quarterly, annual), corporate sponsorships for events, and fundraising events including golf tournaments, 5K runs, marathon teams, casino cruises, and other community events. Every dollar is allocated to research, clinical trials, and operational costs of the nonprofit.
2. Merchandise Sales: The foundation operates an online store selling branded merchandise including t-shirts, hoodies, hats, and beanies. Items range from $15 to $55. Revenue from merchandise sales supports the foundation's mission and clinical trial funding.

Pricing tiers

Go-to-market motion1 record

Distribution channels8 records

Marketing channels16 records

Core offering

The Dion Foundation is a 501(c)(3) nonprofit that raises and deploys charitable funds to finance the first-in-human clinical trial of ATA-200 gene therapy for Limb-Girdle Muscular Dystrophy Type 2C (LGMD2C/R5), while operating a global patient and family community and producing fundraising events. Revenue is generated through individual donations (one-time and recurring), corporate event sponsorships, and branded merchandise sales, with proceeds directed toward Atamyo Therapeutics' gene therapy program, rare disease advocacy, and family support.

Product overview

The Dion Foundation is a 501(c)(3) non-profit charitable organization established in 2023 to fund research and find treatments for Limb-Girdle Muscular Dystrophy Type 2C (LGMD2C/R5). The organization operates as a unified charitable platform offering donation-based fundraising for clinical trials, a patient and family community with registry services, branded merchandise sales, and experiential fundraising events (golf tournaments, 5K runs, marathon teams). The core focus is financing the first-ever clinical trial for LGMD2C gene therapy through Atamyo Therapeutics' ATA-200 program.

Differentiator

Problem solved

Functional benefit

Products and services

• Charitable Donations and Fundraising Platform Online donation platform accepting one-time and recurring gifts at preset and custom amounts, channeling funds to LGMD2C clinical trials and family programs. Tax-deductible under 501(c)(3) status.
• Clinical Trial Funding Partnership with Atamyo Therapeutics (ATA-200) Co-funding program that financed the US deployment of Atamyo Therapeutics' Phase 1b/2 trial of ATA-200 AAV gene therapy for LGMD2C/R5 at the Powell Gene Therapy Center, University of Florida, with over $1,000,000 of foundation-raised capital committed.
• LGMD2C Patient and Family Community Global patient community for families affected by LGMD2C providing private Facebook forums, peer connection, advocacy, and pathways to clinical trial participation.
• Branded Merchandise Store E-commerce store selling t-shirts ($15-$30), hoodies ($40-$55), hats ($20-$30), and accessories (including the 'No Child Left Behind' apparel and 'Harpoon Rare Disease' collection), with revenue directed to foundation programs.
• Par for a Cure Charity Golf Tournament Annual charity golf tournament at Marshfield Country Club, MA with corporate sponsorship tiers ranging from Birdie ($500) to Condor ($5,000), offering branding, foursome inclusion, and event access.
• Hustle for the Muscle 5K Annual 5K run/walk charity event held in Waltham, MA and Naples, FL, with team registration, individual fundraising pages, and vendor/sponsor booths to support LGMD research.
• Boston Marathon Team Dion Charity running team for the Boston Marathon requiring a $10,000 per-runner fundraising minimum, managed via GiveGain, with proceeds supporting LGMD2C clinical trials.
• LGMD2C Patient Registry HIPAA-compliant patient registry recruiting LGMD2C/R5 patients to assist researchers with clinical study identification, natural history study participation, advocacy, and care network connections.
• Educational and Awareness Materials Downloadable fundraising flyers, brochures, and sponsorship information for community distribution and LGMD awareness building.

Quantifiable outcome

• Over 90% of muscle fibers expressing the SGCG protein in treated patients, demonstrating effective gene delivery (90.2% for patient 1 and 92.1% for patient 2 at 6-month biopsy).
• +3 more outcomes

Named customers5 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Nine partnerships are on record, tiered minor, moderate, flagship and core.

• LGMD Awareness FoundationminorGTM or Marketing Partner · 7 September 2025The Dion Foundation has partnered with LGMD Awareness Foundation as part of a Foundation Spotlight to raise awareness for limb-girdle muscular dystrophy. The LGMD Awareness Foundation provides resources, events, and campaigns to support individuals living with LGMD.
• The Bailey FamilymoderateOthers · 7 September 2025The Bailey Family (Brian and Chrissy Bailey with children Kennedy and Berkeley, both diagnosed with LGMD2C in summer 2025) joined The Dion Foundation as partner families in September 2025 to help raise awareness, accelerate funding for research, and support children living with LGMD2C.
• The Colella FamilymoderateOthers · 7 September 2025The Colella Family (Grant, Alexa, Ryan, and Charlotte Colella, diagnosed with LGMD2C) joined The Dion Foundation as partner families in September 2025 to help fundraise, advocate, and shine a light on children living with LGMD2C.
• MassBiomoderateGTM or Marketing Partner · 27 October 2024The Dion Foundation participated in the MassBio Patient Advocacy Summit 2024 and the 2025 State of Possible Conference, connecting with the life sciences industry in Massachusetts. Joe and Courtney Dion served as panel speakers discussing their journey from parent advocates to clinical trial funders alongside Atamyo Therapeutics.
• BIO (Biotechnology Innovation Organization)moderateGTM or Marketing Partner · 27 October 2024The Dion Foundation participated in the 2024 BIO Patient & Health Advocacy Summit in Washington, D.C., where Joe and Courtney Dion shared their family story and the importance of the Pediatric Priority Review Voucher. The foundation also appeared on the I AM BIO podcast discussing rare disease hope and advocacy.
• Atamyo TherapeuticsflagshipStrategic or Co-development Partner · 4 September 2024The Dion Foundation partnered with Atamyo Therapeutics to finance and support the expansion of the US clinical trial of ATA-200 gene therapy for LGMD2C/R5. The foundation provided over $1,000,000 in financial support to deploy the first US clinical trial site at the Powell Gene Therapy Center, University of Florida. The partnership was expanded in February 2026 to support financing of the ongoing Phase 1b/2 dose-escalation study evaluating the safety and efficacy of ATA-200 in children with LGMD-R5.
• GenethoncoreStrategic or Co-development Partner · 4 September 2024Genethon is a non-profit research organization and pioneer in developing gene therapies for rare diseases. Atamyo Therapeutics is a spin-off of Genethon. ATA-200 gene therapy is based on the research of Isabelle Richard, Ph.D., Research Director at CNRS in France and head of the Progressive Muscular Dystrophies Laboratory at Genethon. The Dion Foundation's partnership with Atamyo connects the foundation to Genethon's 30+ years of gene therapy development expertise.
• Powell Gene Therapy Center at University of FloridacoreStrategic or Co-development Partner · 2 June 2024The Powell Gene Therapy Center at the University of Florida, led by Dr. Barry Byrne (Associate Chair of Pediatrics and Director), is the site where the first US patients were dosed with ATA-200 gene therapy. Dr. Barry Byrne serves as the principal investigator of the Phase 1b/2 clinical trial (NCT05973630). The Dion Foundation's funding enabled the deployment of this US clinical site.
• Muscular Dystrophy Association (MDA)coreGTM or Marketing PartnerThe MDA Conference serves as a platform where Atamyo Therapeutics and The Dion Foundation present clinical trial results for ATA-200 gene therapy. MDA is a leading organization in neuromuscular disease research and care. The foundation's partnership with Atamyo was announced at MDA Conference 2026 where promising results were presented.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• LGMD Awareness Foundation: Specifically named as a Dion Foundation partner; both organizations focus on limb-girdle muscular dystrophy patient education, awareness events, and resource provision, with overlapping patient and family communities.
• Solve FSHD: Patient-founded nonprofit targeting facioscapulohumeral muscular dystrophy (FSHD), another LGMD-adjacent muscular dystrophy subtype; comparable as a small, parent-led research and advocacy funder in the muscular dystrophy space.
• CureDuchenne: Patient-founded nonprofit funding Duchenne muscular dystrophy gene therapy and translational research; uses a similar model of community fundraising, venture-style diligence on academic and industry programs, and partnership co-funding.
• Charley's Fund: Family-launched nonprofit funding translational research and clinical trials for Duchenne muscular dystrophy; another small-team, family-driven model that directs donations to specific drug-development programs in ultra-rare pediatric disease.
• Parent Project Muscular Dystrophy (PPMD): Advocacy and research-funding nonprofit for Duchenne muscular dystrophy, with deep advocacy on FDA pathways (similar PPRV exposure) and a long track record of co-funding DMD gene-therapy trials — a close functional analog to The Dion Foundation for LGMD2C.
• Foundation for Angelman Syndrome Therapeutics (FAST): Parent-driven nonprofit that has become a primary funder of Angelman syndrome gene-therapy programs, channeling community donations directly to biotech and academic programs — a structural twin of the Dion Foundation model.
• CureSMA: Family-founded nonprofit that funded early SMA drug development (Spinraza, Zolgensma) and continues to fund gene-therapy trials. Highly comparable as a parent-driven rare pediatric neuromuscular disease foundation channeling community-raised capital into clinical-stage therapeutics.

Broad incumbents

• Muscular Dystrophy Association (MDA): Large incumbent across all neuromuscular diseases; runs the MDA Conference where ATA-200 data is presented and partners with the foundation on awareness, but operates at much greater scale and across multiple indications.
• Global Genes: Rare-disease advocacy and patient community platform with similar awareness, fundraising, and policy work; comparable as a cross-disease peer but at a broader scale and without the single-trial funding focus.
• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for rare diseases including LGMD subtypes; comparable at the policy and patient-advocacy layer (PPRV, Give Kids a Chance Act) rather than as a single-disease funder.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/DionFund
• Facebookfacebook.com/people/The-Dion-Foundation/100090386813724
• LinkedInlinkedin.com/company/the-dion-fund
• Instagraminstagram.com/thedionfoundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Dion Foundation