named programs · 5 · from sources
What they call their work
Advocacy and Awareness Campaign
Engages in public education, insurance appeal support, and testimony before regulatory agencies to improve access to DMD treatments.
Brighter Days Community Support Fund
Provides financial assistance to families affected by DMD for expenses not covered by insurance, administered in partnership with the Jett Foundation.
Research Funding Initiative
Supports innovative research projects and clinical trials for Duchenne Muscular Dystrophy, including past funding for Akashi Therapeutics and Sarepta Therapeutics.
Robotic Exoskeleton Arms Program
Funds Wilmington Robotic Exoskeleton arms (WREX) for local boys with DMD to improve mobility and independence.
Soaring: A Story of Courage
Supported the publication and distribution of a graphic novel by Suneel Ram to raise awareness of DMD in over 200 schools in Western New York.
activities · 4 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Advocating for public policies to improve research funding and access to care for Duchenne Muscular DystrophyEngages in advocacy efforts at the federal level, including testifying at Congressional hearings and promoting policies that increase research funding and improve access to care for individuals with Duchenne Muscular Dystrophy.
- Producing and distributing educational materials about Duchenne Muscular DystrophyFunds the creation and distribution of educational resources, including the graphic novel 'Soaring: A Story of Courage' and the coffee-table book 'Women in the City of Good Neighbors', to raise awareness about Duchenne Muscular Dystrophy in schools and communities.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding research for Duchenne Muscular Dystrophy treatments and curesFunds medical and scientific research aimed at treating and curing Duchenne Muscular Dystrophy, including support for drug development at Akashi Therapeutics (HT-100) and Sarepta Therapeutics (eteplirsen/Exondys 51), and reports on FDA approvals and designations for emerging therapies such as vamorolone (AGAMREE), ELEVIDYS, casimersen (AMONDYS 45), and deflazacort (Emflaza).
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Adaptive Equipment Provision 1 activity
- Providing direct support services to families affected by Duchenne Muscular DystrophyProvides direct support to families in Western New York, including supplying quality-of-life tools such as Wilmington Robotic Exoskeleton arms (WREX) to improve mobility and independence for affected individuals, and organizing volunteer networks to assist with outreach and care.
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Disease-Specific Clinical & Patient Education 1 activity
- Sharing scientific and clinical information about Duchenne Muscular DystrophyProvides up-to-date information on disease progression, current research strategies such as gene therapy and exon skipping, and recent FDA-approved treatments to support informed decision-making among patients, families, and caregivers.
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financials · form 990 · fy2024
revenue
Total revenue$32K
Contributions & grants$15K46%
Program service revenue$00%
Investment income$17K54%
Other revenue$0
expenses
Total expenses$87K
Program expenses86%
Admin / overhead2%
Fundraising12%
Salaries & benefits$0
Grants paid out$75K
Largest expense lineFacilities
balance sheet
Total assets$379K
Cash$379K
Investments$0
Liabilities$0
Net assets$379K
Liquid reserves52.1 mo
5 years on record · 2020–2024 · YoY revenue -57.5%
leadership · form 990 part vii · fy2024
Who runs it
board members · 8
- BENJAMIN B ROBERTS — DIRECTOR
- DAVID J KORZAK — DIRECTOR
- GEORGE HAJDUCZOK ESQ — DIRECTOR
- GREGORY DIFRANCESCO MD — TREASURER
- KENNETH MANNING ESQ — SECRETARY
- NEERA GULATI MD — DIRECTOR
- THOMAS A MAHER CPA — PRESIDENT
- WILLIAM CHRIST ESQ — DIRECTOR
relationships · 13
Who they work with
- Akashi Therapeutics Partner — Funded by Suneel's Light Foundation for the development of HT-100 for Duchenne Muscular Dystrophy.
- CHARLEY'S FUND Partner — Resource partner supporting medical research and innovation for Duchenne Muscular Dystrophy.
- CURE DUCHENNE Partner — Resource partner funding research, early diagnosis, and treatment access for Duchenne Muscular Dystrophy.
- Congress Government — Testified at Congressional hearings to influence policy on Duchenne Muscular Dystrophy.
- JETT FOUNDATION Partner — Resource partner offering support and programming for individuals and families affected by Duchenne Muscular Dystrophy.
- Jett Foundation Partner — Administers the Brighter Days Community Support Fund on behalf of Suneel's Light Foundation to provide financial assistance to families affected by Duchenne Muscular Dystrophy.
- PARENT PROJECT MUSCULAR DYSTROPHY Partner — Resource partner providing information on DMD drug development pipeline and care advocacy.
- Sarepta Therapeutics Partner — Funded by Suneel's Light Foundation for the development of eteplirsen (Exondys 51) for Duchenne Muscular Dystrophy.
- Tom Maher Partner — Point of contact for project-specific support and involvement inquiries
- Women in the City of Good Neighbors Partner — Collaborated with contributors featured in the book to produce a fundraising publication supporting DMD research.
- Zuiker Press Partner — Collaborated to publish and distribute the graphic novel 'Soaring: A Story of Courage' by Suneel Ram.
- Zuiker Press Partner — Collaborated with Suneel's Light Foundation to publish and distribute Soaring, A Story of Courage, a graphic novel raising awareness of Duchenne Muscular Dystrophy.
- info@suneelslight.com Government — Primary contact for privacy inquiries and communication regarding personal information handling
strategies · 5
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.
- Education and Advocacy for Systemic Changemethodology: education-and-advocacyBy increasing public awareness and understanding of Duchenne Muscular Dystrophy, the foundation reduces suffering and improves outcomes because informed communities and policymakers enable earlier diagnosis, better care, and improved access to treatments.
- Integrated Research, Advocacy, and Support Modelmethodology: integrated-research-advocacy-supportBy combining research funding, policy advocacy, and direct family support, the foundation amplifies impact on Duchenne Muscular Dystrophy outcomes because addressing the condition requires scientific, systemic, and personal interventions in tandem.
- Policy Advocacy for Treatment Accessmethodology: policy_advocacyBy influencing regulatory and insurance policies, the foundation improves patient access to emerging treatments because systemic barriers often prevent timely delivery of research breakthroughs to those in need.
- Public Engagement to Fund Researchmethodology: public-engagement-for-research-fundingBy leveraging storytelling and emotional appeals to engage the public, the foundation raises funds for research because personal narratives drive donor motivation and sustained financial support for long-term scientific goals.
- Research-Driven Cure Developmentmethodology: research-driven cure developmentBy funding external and clinical research, including gene therapy and exon skipping, the foundation accelerates therapy development and aims to produce a cure because breakthrough treatments emerge from targeted investment in innovative science.