named programs · 2 · from sources
What they call their work
Scientific Research Funding
Provides bridge funding for translational research projects with high potential to extend life expectancy, helping promising science cross the 'Valley of Death' into clinical development.
Transforming Care
Partnership with Stony Brook Children’s Hospital to establish a Certified Duchenne Care Center, improving access to multidisciplinary care and clinical trials for boys with Duchenne muscular dystrophy.
activities · 3 groups
What they do
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Genetic and Neurological Disease Research Funding 2 activities
- Funds initiatives to improve standard of care and quality of life for individuals with Duchenne muscular dystrophySupports programs and medical advancements focused on enhancing the standard of care, quality of life, and long-term outlook for individuals diagnosed with Duchenne muscular dystrophy, including funding for the development of the first pediatric neuromuscular center in the tri-state area.
- Funds translational and basic science research for Duchenne muscular dystrophy therapeuticsProvides bridge funding and financial support for researchers advancing basic science and translational research aimed at moving scientific discoveries into human clinical trials for Duchenne muscular dystrophy.
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Healthcare Policy Advocacy 1 activity
- Advocates for reform of regulatory processes affecting access to medical advancementsConducts advocacy efforts to reform outdated regulatory frameworks that hinder patient access to new medical treatments and therapies.
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Uncategorized 1 activity
- Partners with Stony Brook Children's Hospital to establish and accredit a Certified Duchenne Care CenterCollaborates with Stony Brook Children's Hospital to create a comprehensive care model for boys with Duchenne muscular dystrophy and achieved Certified Duchenne Care Center accreditation, one of only two such centers in New York State.
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financials · form 990EZ · fy2025
revenue
Total revenue$11K
Contributions & grants$11K100%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$716
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$266K
Cash—
Investments—
Liabilities—
Net assets$266K
6 years on record · 2020–2025 · YoY revenue -82.3%
relationships · 4
Who they work with
- Parent Project Muscular Dystrophy Network — Member organization whose accreditation program certifies Duchenne Care Centers, including Stony Brook Children's Hospital.
- Stony Brook Children's Hospital Partner — Collaborated to develop a pediatric neuromuscular center for Duchenne muscular dystrophy care.
- Stony Brook Children's Hospital Partner — Collaborates to create a comprehensive care model for boys with Duchenne muscular dystrophy.
- Stony Brook Children's Hospital Partner — Partnered to establish a Certified Duchenne Care Center, improving access to multidisciplinary care for boys with Duchenne muscular dystrophy.
strategies · 6
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Bridge Funding to Advance Early-Stage Researchmethodology: bridge-funding-for-researchBy providing funding for early-stage research, we enable promising scientific discoveries to move from the lab to clinical application because targeted investment overcomes the "Valley of Death" gap where pharmaceutical interest is limited.
- Family-Driven Advocacy Modelmethodology: family-driven_advocacyBy mobilizing personal and family commitment to rare disease causes, we produce sustained advocacy and scalable community impact because lived experience drives mission focus and urgency.
- Model Replication Accelerates Program Developmentmethodology: model_replication_and_adaptationBy leveraging proven models from peer organizations, we accelerate the development and implementation of new programs because adapting existing, tested approaches reduces time and risk compared to de novo design.
- Multidisciplinary Care Access Extends Life Expectancymethodology: multidisciplinary-care-accessBy providing access to coordinated, multidisciplinary care, we extend life expectancy for boys with Duchenne muscular dystrophy because integrated clinical support addresses the complex medical needs of the disease more effectively.
- Private Fundraising Compensates for Market Gaps in Orphan Disease Researchmethodology: private-funding for orphan disease researchBy mobilizing private fundraising, we address the lack of pharmaceutical investment in Duchenne muscular dystrophy because orphan diseases are commercially under-served and require alternative funding to advance research and care.
- Strategic Financial Leverage to Amplify Impactmethodology: financial_leverageBy using strategic funding as a catalyst, we attract additional investment from major public health agencies because targeted initial capital reduces risk and demonstrates proof of concept, enabling scale.