Cure Duchenne

What Cure Duchenne does

CureDuchenne is a Newport Beach, California-based 501c3 nonprofit organization founded in 2003 by Debra Miller after her son was diagnosed with Duchenne muscular dystrophy. The organization pursues a venture philanthropy model that combines direct funding of academic and industry research with curated programs for affected families. Through its CD Ventures arm, CureDuchenne makes equity and convertible investments in biotech companies developing Duchenne therapies, including exon-skipping, gene therapy, suppressor tRNA, and ultrasound-mediated gene delivery approaches; reported portfolio activity includes Edgewise Therapeutics (acquired by Servier for up to $2.65 billion in 2026), Tevard Biosciences (two investments, 2026), SonoThera (2026 Series B participation), Entrada Therapeutics, and Avidity Biosciences.

The organization's program surface comprises CureDuchenne Cares (one-to-one consultations connecting families with scientists, physical therapists, and care coordinators), CureDuchenne FUTURES (annual national conference), CureDuchenne Champions (community program), CureDuchenne Link (centralized clinical, biosample, and patient-reported data hub), and a Certified Physical Therapy training program. All services are provided free of charge to families affected by Duchenne and Becker muscular dystrophy.

CureDuchenne generates no commercial revenue. Its funding model relies on individual donations, corporate contributions (e.g., Blizzard Entertainment in 2025), events such as golf tournaments and luncheons, and reinvestment proceeds from biotech exits. The organization has cumulatively raised more than $50 million since inception and reports having catalyzed over $4.6 billion in follow-on funding from biotech partners and investors; 19 CureDuchenne-funded projects have advanced to clinical trials. Life expectancy in the Duchenne population is reported to have increased by approximately ten years since the organization's founding, and CureDuchenne contributed early funding to the first FDA-approved Duchenne drug.

Name

Cure Duchenne

Legal name

CureDuchenne

Website

https://cureduchenne.org

Company type

Private

Founded year

2003

Operating status

Operating

Headcount range

11–50 employees

Short description

CureDuchenne is a Newport Beach-based 501c3 nonprofit that uses a venture philanthropy model to fund Duchenne muscular dystrophy research, invests in biotech companies developing Duchenne therapies, and runs free education, support, and data programs for affected families, clinicians, and researchers.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Disease Research Nonprofit Services

NAICS

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

SIC

Services-Health Services (8000)

akta.pro primary industry

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

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Duchenne research funding
• Venture philanthropy nonprofit
• Patient advocacy services
• Clinical trial education
• Muscular dystrophy support

Headquarters

HQ city

Newport Beach

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: CureDuchenne raises funds through donations, fundraising events (golf tournaments, luncheons), and direct contributions from individuals and organizations committed to finding a cure for Duchenne muscular dystrophy.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

CureDuchenne is a 501c3 nonprofit that funds Duchenne muscular dystrophy research through a venture philanthropy model, directly investing in biotech companies developing gene therapy, exon skipping, and suppressor tRNA therapies. It delivers free educational and support programs to affected families, including one-to-one consultations, an annual national conference, and a certified physical therapy training program for clinicians. It also maintains a centralized patient data hub combining clinical data, biosamples, and patient-reported information.

Product overview

CureDuchenne is a global nonprofit organization dedicated to finding and funding a cure for Duchenne muscular dystrophy. Rather than a traditional product company, it operates several interconnected programs: CureDuchenne Cares provides one-to-one family support consultations; CureDuchenne FUTURES is an annual conference program; CureDuchenne Champions connects affected families; CureDuchenne Link is a centralized patient data hub; the CureDuchenne Certified Physical Therapy Program trains clinicians; and CureDuchenne Ventures conducts venture philanthropy investments in biotech companies developing Duchenne therapies. The organization also maintains a Resource Library of educational materials and webinars. These programs work together to accelerate research, improve patient care, and support the Duchenne community through education, funding, and strategic investments.

Differentiator

Problem solved

Functional benefit

Brands

• CD Ventures: CureDuchenne's venture arm that strategically deploys capital to advance innovative science into clinical development for Duchenne therapies.
• CureDuchenne CARES
• CureDuchenne FUTURES
• CureDuchenne Champions
• CureDuchenne Link

Products and services

• CureDuchenne CARES One-to-one consultation program that connects families affected by Duchenne muscular dystrophy with CureDuchenne scientists, physical therapists, parents, fundraising staff, and family support resource coordinators for personalized guidance on care and clinical trials; delivered free of charge via scheduled meetings.
• CureDuchenne FUTURES National Conference Annual national conference program that brings together families, researchers, clinicians, and industry partners for educational sessions, research updates, and networking focused on Duchenne muscular dystrophy.
• CureDuchenne Champions Community program that connects, recognizes, and supports individuals and families affected by Duchenne muscular dystrophy through peer engagement and shared storytelling.
• CureDuchenne Ventures (CD Ventures) Venture philanthropy investment program that deploys donor-raised capital into biotech companies developing Duchenne muscular dystrophy therapies, de-risking promising approaches and attracting follow-on investment from biotech and financial investors.
• CureDuchenne Certified Physical Therapy Program Certification program that trains physical therapists in Duchenne-specific care, covering stretching regimens, activity guidelines, caregiver safety, and professional courses for clinicians and clinics.
• CureDuchenne Resource Library Comprehensive library of webinars, presentations, and educational materials covering Duchenne clinical trials, research updates, care coordination, school navigation, and Spanish-language resources for affected families and clinicians.
• CureDuchenne Link Centralized data hub combining clinical data, biosamples, and patient-reported information for people with Duchenne and Becker muscular dystrophy and carriers, supporting research and clinical insights.

Quantifiable outcome

• Life expectancy for Duchenne patients increased by 10 years since CureDuchenne's inception
• +2 more outcomes

Segments2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

One partnership is on record.

• Tevard BiosciencescoreStrategic or Co-development Partner · 20 May 2026CureDuchenne announced a second investment into Tevard Biosciences to advance the company's suppressor tRNA therapy platform for Duchenne muscular dystrophy caused by nonsense mutations, which affect approximately 12% of individuals with the disease. Tevard's preclinical data demonstrated restoration of an average of 70% of wild-type dystrophin protein levels in disease models, with functional improvements and durable protein expression following a single intravenous dose.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Multiple Sclerosis Society: Major disease-specific nonprofit funding MS research and supporting patients. Larger and more established than CureDuchenne but operates a comparable research-funding + community-services structure.
• Muscular Dystrophy Association (MDA): Largest US nonprofit covering all neuromuscular diseases including Duchenne, with research grants, care centers, and summer camps. Overlaps CureDuchenne on Duchenne research funding and family services but operates a much broader disease mandate.
• National Organization for Rare Disorders (NORD): Umbrella rare-disease organization providing research grants, advocacy, and patient services across many conditions. Broader in scope but operates similar grantmaking and patient-support mechanics.

Direct peers

• Parent Project Muscular Dystrophy (PPMD): The other leading Duchenne-specific nonprofit in the US, funding research, advocating for patients, and running community programs. Directly comparable to CureDuchenne in disease focus, donor base, and venture philanthropy orientation.
• Friedreich's Ataxia Research Alliance (FARA): Disease-specific nonprofit funding Friedreich's ataxia research, running patient registries, and supporting clinical trial recruitment. Closely mirrors CureDuchenne's integrated research + community + data model on a different rare disease.
• ALS Association: Disease-specific nonprofit funding ALS research, providing patient services, and advocating for access. Comparable in mission structure and donor-driven research funding model, though ALS has a different therapeutic landscape.
• JDRF (formerly Juvenile Diabetes Research Foundation): Type 1 diabetes nonprofit that funds research, advocates for access, and runs community programs with a venture philanthropy approach. Operates a similar disease-specific funding model that has commercialized multiple therapies.
• Children's Tumor Foundation: Disease-specific nonprofit funding neurofibromatosis research through grants and venture philanthropy-style investments. Operates a comparable integrated research-funding and patient-support model in another rare genetic disease.
• Cystic Fibrosis Foundation: Pioneered the venture philanthropy model in rare disease, funding biotech development that led to CFTR modulator drugs. The closest analog to CureDuchenne's model of early-stage biotech investment tied to a specific patient community.

Emerging players

• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit focused on accelerating therapeutic development through legislative engagement. Comparable to CureDuchenne's policy/advocacy function but without the direct venture investing.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/CureDuchenne
• YouTubeyoutube.com/cureduchenne
• Facebookfacebook.com/CureDuchenne
• LinkedInlinkedin.com/company/cureduchenne
• Instagraminstagram.com/cureduchenne

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds2 records

Investors2 records

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments2 records

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

Frequently asked questions about Cure Duchenne