Charley's Fund
Charley's Fund is a 501(c)(3) nonprofit founded in 2004 that funds research, clinical programs, and advocacy to accelerate treatments for Duchenne muscular dystrophy, operating The Duchenne Program at UMass Chan Medical School and deploying $50M+ across 50+ active DMD treatment programs.
- Company typePrivate
- Founded2004
- HeadquartersGreat Barrington, United States
- Headcount1–10
- GTM typeB2B and B2C
- OfferingServices
What Charley's Fund does
Charley's Fund is a 501(c)(3) tax-exempt public charity founded in 2004 by Tracy and Benjamin Seckler after their son Charley was diagnosed with Duchenne muscular dystrophy at age three. The organization is headquartered in Great Barrington, Massachusetts, and operates with a lean staff of 1-10 employees, channeling 91 cents of every dollar spent directly to programmatic efforts. Over an 18-year history, the organization has directed more than $50 million to medical research, drug development, and the improvement of tools and resources in the DMD research and care ecosystem, and reports that 50+ DMD treatment programs are now in active development versus zero approximately 15 years prior.
The organization's core portfolio is anchored by The Duchenne Program at UMass Chan Medical School in Worcester, MA, launched in July 2018 with a $6 million, five-year commitment from Charley's Fund and operating as the first multidisciplinary DMD clinic in the Northeast, serving 400+ families directly with intensive two-day coordinated specialist visits and hosting multiple clinical trials. Supporting initiatives include the Of Mice and Measures (OMAM) program, a multi-institution effort launched in 2017 that standardized preclinical mouse-model protocols across 22+ institutions; support for the development of Electrical Impedance Myography (EIM) as a clinical trial outcome measure in partnership with Dr. Seward Rutkove; the Duchenne Video Assessments System developed with Casimir, a smartphone-based tool scored by trained physical therapists; and The Race to Yes advocacy movement, which engaged 100,000+ voices and contributed to the FDA's accelerated approval of Exondys 51 (eteplirsen), the first approved DMD therapy. The organization also participates in the international cTAP alliance.
Charley's Fund operates a donation-based revenue model, raising funds from individuals through preset donation tiers ($50, $250, $500, $1,000, and custom amounts), stock gifts, and community fundraising programs such as the annual Small Kids BIG Change youth initiative. Distribution is executed through co-funded grants to academic and clinical partners (e.g., Leiden University Medical Center, University of Bari, UMass Chan Medical School, Harvard/Beth Israel Deaconess) and through The Duchenne Program clinic. The customer/mission base is segmented into families of children and young adults with DMD (primary beneficiaries), DMD researchers and drug developers (grant and partnership recipients), and healthcare providers implementing coordinated DMD care models, with co-funding relationships maintained across a coalition of aligned family foundations including Duchenne UK, Ryan's Quest, Michael's Cause, Pietro's Fight, JB's Keys to DMD, Hope for Gus, the Nash Avery Foundation, Team Joseph, and Joining Jack.
Charley's Fund firmographics
Firmographics- Name
- Charley's Fund
- Legal name
- Charley's Fund, Inc.
- Website
- https://charleysfund.org
- Company type
- Private
- Founded year
- 2004
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Charley's Fund is a 501(c)(3) nonprofit founded in 2004 that funds research, clinical programs, and advocacy to accelerate treatments for Duchenne muscular dystrophy, operating The Duchenne Program at UMass Chan Medical School and deploying $50M+ across 50+ active DMD treatment programs.
- Ownership category
- akta.pro rank
Charley's Fund industry classification
Industry- Product category
- Nonprofit medical research foundation — Duchenne muscular dystrophy
- NAICS
- Voluntary Health Organizations (813212), Grantmaking Foundations (813211)
- SIC
- Services-Social Services (8300), 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
- Health & Medical Research Grantmaking Foundations (BPAGAKAL), Grantmaking & Philanthropic Funds (Institutional Donors) (BPADAOAB)
Keywords
Where Charley's Fund is headquartered
LocationHeadquarters
- HQ city
- Great Barrington
- HQ country
- United States
- HQ region
- North America
Offices2 records
Markets served
Charley's Fund business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Others, Marketing or Sales, Operations
Revenue model
- Donations and Fundraising: As a 501(c)(3) nonprofit public charity, Charley's Fund generates revenue primarily through individual donations. The organization runs annual fundraising campaigns including the 'Small Kids BIG Change' youth program with preset donation amounts ($50, $250, $500, $1000, and custom). The website also mentions stock donations as an option.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | One time/ perpetual license | Donation-based revenue model with preset and custom amounts |
Go-to-market motion2 records
Distribution channels1 record
Marketing channels10 records
Charley's Fund product offering
Product offeringCore offering
Charley's Fund is a 501(c)(3) nonprofit public charity that funds medical research, drug development, clinical programs, and advocacy to accelerate treatments for Duchenne muscular dystrophy. The organization channels individual donations and collaborative grants into preclinical research standardization, novel clinical outcome measures, and The Duchenne Program at UMass Chan Medical School — a multidisciplinary clinic that delivers coordinated care to 400+ families while hosting clinical trials. Complementary initiatives include regulatory advocacy (The Race to Yes) and community engagement programs that mobilize donor and family support.
Product overview
Charley's Fund is a nonprofit organization (501(c)(3)) founded in 2004 by Tracy and Benjamin Seckler after their son Charley was diagnosed with Duchenne muscular dystrophy. The organization does not offer a traditional product but rather operates a portfolio of interconnected programs and initiatives to accelerate Duchenne treatments. The flagship initiative is The Duchenne Program at UMass Chan Medical School, a world-class multidisciplinary clinic serving 400+ families. Supporting programs include Of Mice and Measures (improving preclinical research models), Electrical Impedance Myography and Duchenne Video Assessments (novel outcome measures for clinical trials), and The Race to Yes (regulatory advocacy). The organization has deployed over $50 million to advance therapeutic development for Duchenne.
Differentiator
Problem solved
Functional benefit
Products and services
- The Duchenne Program at UMass Chan Medical School A world-class multidisciplinary medical clinic exclusively dedicated to Duchenne muscular dystrophy and Becker muscular dystrophy, located at UMass Memorial's ambulatory care center in Worcester, MA. The clinic provides comprehensive, coordinated care to 400+ families from infants to adults, integrates clinical trials, and advances therapeutic development through research. Families attend intensive two-day visits (Wednesdays and Thursdays) for integrated specialist appointments.
Quantifiable outcome
- $50 million+ deployed to Duchenne research and care ecosystem over 18 years
- +4 more outcomes
Companies that use Charley's Fund
Customer profileNamed customers3 records
Segments3 records
Ideal customer profiles4 records
Charley's Fund technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
Charley's Fund partnerships and signals
Strategic signalPartnerships
Eight partnerships are on record, tiered core.
- UMass Chan Medical School / The Duchenne ProgramcoreMulti-year partnership to establish The Duchenne Program, a world-class multidisciplinary clinic at UMass Medical School in Worcester, MA. The clinic is exclusively dedicated to Duchenne care and research, serving 400+ families directly. Charley's Fund committed $6 million over five years. The program provides integrated, coordinated care while advancing clinical trials.
- Team JosephcoreMichigan-based partner in The Race to Yes initiative, working together to advocate for faster FDA regulatory processes for Duchenne treatments. This partnership successfully influenced accelerated approval of Exondys 51.
- Leiden University Medical Center (Prof. Annemieke Aartsma-Rus and Dr. Maaike van Putten)coreAcademic research partners conducting the Of Mice and Measures preclinical study, evaluating best practices for D2/mdx and BL10/mdx mouse models.
- University of Bari (Prof. Annamaria De Luca)coreAcademic research partner conducting the Of Mice and Measures preclinical study alongside Leiden University.
- CasimircoreCompany developing the Duchenne Video Assessments System. Co-founded by two parents of boys with DMD. Charley's Fund supports their clinical study to test the scoring scale's reliability.
- Dr. Seward Rutkove (Harvard/Beth Israel Deaconess)coreEIM pioneer whose work Charley's Fund has supported to evaluate Electrical Impedance Myography as an outcome measure for Duchenne clinical trials.
- cTAP (Collaborative Trajectory Analysis Project)coreInternational alliance of Duchenne companies, physicians, nonprofits, and statistical experts working to pool resources and identify solutions to drug development problems. Charley's Fund President and COO Laura Dalle Pazze serves as an active participant.
- Dr. Brenda WongcoreFounding clinic director of The Duchenne Program at UMass. Brought from Cincinnati where she directed the Comprehensive Neuromuscular Center for 19 years.
Scale indicators14 records
Recent moves6 records
Expansion highlights5 records
Charley's Fund competitors and assessment
Company assessmentEmerging players
- Casimir: Company developing the Duchenne Video Assessments System, co-founded by parents of boys with DMD. Charley's Fund supports Casimir's clinical study, making it a directly comparable patient-driven DMD research collaboration.
- cTAP (Collaborative Trajectory Analysis Project): International alliance of DMD companies, physicians, nonprofits, and statisticians pooling data to address drug-development challenges. Charley's Fund President Laura Dalle Pazze is an active participant; comparable mission focus on accelerating DMD trial design.
Direct peers
- Duchenne UK: UK-based DMD-focused nonprofit that co-funds preclinical research with Charley's Fund (e.g., the $314K Leiden/Bari grant). Directly comparable disease focus, research funding model, and patient advocacy activities.
- Jett Foundation: Family-founded DMD nonprofit providing patient programming, advocacy, and research funding. Comparable donor base (DMD families) and patient-services-plus-research hybrid model.
- Parent Project Muscular Dystrophy (PPMD): The largest U.S. nonprofit focused exclusively on Duchenne and Becker muscular dystrophy. Directly comparable mission (DMD research funding, advocacy, patient programs) and donor base; Charley's Fund operates in the same niche with overlapping partnerships (e.g., cTAP).
- Cure Duchenne: U.S. DMD-focused nonprofit funding drug development and clinical research. Comparable grantmaking model targeting translational DMD research, with overlapping biotech and academic partners.
- Joining Jack: UK-based DMD nonprofit that co-funded neutrophil elastase inhibitor research with Charley's Fund. Directly comparable disease focus and translational research funding approach.
- Ryan's Quest: Family-founded DMD nonprofit co-funding preclinical studies alongside Charley's Fund, Duchenne UK, Michael's Cause, and Pietro's Fight. Directly comparable funding model and mission focus.
Broad incumbents
- Muscular Dystrophy Association (MDA): Long-established, broad-scope neuromuscular disease nonprofit that funds DMD research and runs multidisciplinary clinics. Comparable care-delivery and grantmaking model but covers all neuromuscular diseases rather than focusing exclusively on Duchenne.
- Casimir (alternative: NIH National Institute of Neurological Disorders and Stroke): Public-sector funder of large-scale DMD research grants and outcome-measure development (e.g., supporting EIM and similar biomarker work). Comparable research-grantmaking activity but with vastly larger budget and broader neurological scope.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights7 records
Customer concentration
Charley's Fund social profiles
Digital presenceCharley's Fund financial estimates
Financial estimateRevenue estimate
Valuation estimate
Charley's Fund leadership team
Management profileNumber of profiles
Profiles3 records
Charley's Fund funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Charley's Fund 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 Charley's Fund
What does Charley's Fund do?
Charley's Fund is a 501(c)(3) nonprofit public charity that funds medical research, drug development, clinical programs, and advocacy to accelerate treatments for Duchenne muscular dystrophy. The organization channels individual donations and collaborative grants into preclinical research standardization, novel clinical outcome measures, and The Duchenne Program at UMass Chan Medical School — a multidisciplinary clinic that delivers coordinated care to 400+ families while hosting clinical trials. Complementary initiatives include regulatory advocacy (The Race to Yes) and community engagement programs that mobilize donor and family support.
Is Charley's Fund a public or private company?
Charley's Fund is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Charley's Fund founded?
Charley's Fund was founded in 2004. It employs 1 to 10 people.
Where is Charley's Fund based?
Charley's Fund is headquartered in Great Barrington, United States, in the North America region.
How does Charley's Fund make money?
One revenue line is on record: donations and Fundraising.
Who are Charley's Fund's main competitors?
Emerging players on record are Casimir and cTAP (Collaborative Trajectory Analysis Project). Direct peers are Duchenne UK, Jett Foundation, Parent Project Muscular Dystrophy (PPMD), Cure Duchenne, Joining Jack and Ryan's Quest. Broad incumbents are Muscular Dystrophy Association (MDA) and Casimir (alternative: NIH National Institute of Neurological Disorders and Stroke).
Does Charley's Fund have an API?
No public API is recorded for Charley's Fund.
What industry is Charley's Fund in?
Charley's Fund's product category is Nonprofit medical research foundation — Duchenne muscular dystrophy. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8300.