named programs · 4 · from sources
What they call their work
Benevolent Support Program
Provides financial assistance for accessible vans, home modifications, medical equipment, and other needs for individuals with DMD.
Duchenne Research Funding
Directs donations to support scientific and medical research projects aimed at finding treatments and a cure for DMD.
Step for a Cure 5K Run and Walk
Annual community event raising awareness and funds for Duchenne Muscular Dystrophy research and support.
TCS NYC Marathon Team
Organizes runners as part of the official charity partner program to raise funds and awareness for DMD.
activities · 5 groups
What they do
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Genetic and Neurological Disease Research Funding 2 activities
- Funding Duchenne Muscular Dystrophy researchFunds medical and scientific research to improve treatments and find a cure for Duchenne Muscular Dystrophy, including specific projects such as the Phase I/IIa Follistatin Gene Therapy Trial and the "Of Mice and Measures" study. The organization has directed over $2.6 million toward research efforts.
- Funding clinical care and clinic operationsProvides grants to support the operations of specialized clinics, such as the UMass Memorial Duchenne Clinic, to ensure access to care for individuals with Duchenne Muscular Dystrophy.
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Rare Genetic Disease Research and Advocacy 1 activity
- Advocacy and lobbying for Duchenne Muscular Dystrophy researchFunds lobbying efforts through O'Neill and Associates to advance policy and funding support for Duchenne Muscular Dystrophy research.
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Charity Event Organization 1 activity
- Organizing fundraising events for Duchenne Muscular DystrophyOrganizes annual events including the Step for a Cure 5K Run & Walk, Spring Dinner Dance Gala, Disco Deck Party, and teams for the NYC Marathon and NYC Half Marathon to raise awareness and funds. The 2024 Step for a Cure event engaged over 1,500 participants.
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Adaptive Equipment Provision 1 activity
- Providing direct financial and in-kind support to individuals affected by Duchenne Muscular DystrophyProvides benevolent support including funding for accessible bathrooms, ceiling lifts, pool lifts, accessible vans, and other medical equipment to improve quality of life for individuals with Duchenne Muscular Dystrophy.
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Disease-Specific Clinical & Patient Education 1 activity
- Providing educational resources about Duchenne Muscular DystrophyOffers information about Duchenne Muscular Dystrophy, including its genetic basis, progression, and impact on mobility and respiration, to increase public understanding.
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financials · form 990 · fy2024
revenue
Total revenue$258K
Contributions & grants$33K13%
Program service revenue$00%
Investment income$14K5%
Other revenue$211K
expenses
Total expenses$249K
Program expenses71%
Admin / overhead16%
Fundraising13%
Salaries & benefits$0
Grants paid out$0
Largest expense lineProfessional Fees
balance sheet
Total assets$877K
Cash$870K
Investments$0
Liabilities$17K
Net assets$860K
Liquid reserves41.9 mo
5 years on record · 2020–2024 · YoY revenue -24.3%
relationships · 10
Who they work with
- Charley’s Fund Partner — Collaborated on the "Of Mice and Measures" research project.
- Children’s Hospital of Philadelphia (CHOP) Partner — Collaborates with CHOP through participation in clinical trials for Duchenne Muscular Dystrophy treatment.
- Jett Foundation Partner — Collaborated with Jett Foundation to fund accessible vans and other mobility equipment.
- Monsignor Farrell Football Team Partner — Collaborated with Michael's Cause to collect food donations for a local pantry.
- Nationwide Children’s Hospital Partner — Funded Phase I/IIa Follistatin Gene Therapy Trial at the Center for Gene Therapy.
- O'Neill and Associates Government — Funded lobbying efforts to advance Duchenne Muscular Dystrophy research.
- St. Peter and Paul and Assumption Food Pantry Partner — Recipient of food and financial donations from Michael's Cause.
- TCS NYC Marathon Partner — Official charity partner of the TCS NYC Marathon, participating in the event to raise awareness and funds for Duchenne Muscular Dystrophy.
- UMass Memorial Duchenne Partner — Funded clinic operations at UMass Memorial Duchenne Clinic.
- United Airlines NYC Half Marathon Partner — Official charity partner of the United Airlines NYC Half Marathon, engaging runners to support the organization’s mission.
strategies · 2
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.
- Awareness and Research Funding to Accelerate Cure Developmentmethodology: research-driven_cure_developmentBy raising public awareness and directing funds into medical and scientific research, we accelerate the development of treatments and progress toward a cure for Duchenne Muscular Dystrophy, because sustained research investment and public engagement are critical to overcoming barriers in therapeutic development.
- Education to Increase Understanding and Awarenessmethodology: education_and_awarenessBy educating the public about the genetic basis and progression of Duchenne Muscular Dystrophy, we increase awareness and understanding, because informed communities are more likely to engage in support, advocacy, and early diagnosis.