named programs · 5 · from sources
What they call their work
Antisense Oligonucleotide (ASO) Therapy Research
Preclinical development of ASO treatments to increase FOXG1 protein production from the healthy gene copy, conducted with contract research organizations.
Drug Repurposing Program
Collaborative research initiative with Tel Aviv University, NIH, and industry partners to identify existing FDA-approved drugs that may increase FOXG1 protein expression and accelerate treatment development.
Gene Replacement Therapy Research
Preclinical research program at the University of Massachusetts Medical School and partner CROs focused on delivering a healthy copy of the FOXG1 gene to brain cells to restore normal protein expression.
Global Research Symposium
Hosts international scientific gatherings to convene researchers, share data, and advance collaborative efforts toward a cure for FOXG1 syndrome.
Grants for Impacted Families
Provides direct financial assistance to eligible families in New York State for medical equipment, therapy, caregiver payments, and travel; supports rare disease caregivers with free mental health counseling through the BelieveWell program.
activities · 7 groups
What they do
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Genetic and Neurological Disease Research Funding 2 activities
- Funding rare disease community initiatives and researchProvides grants to support organizations and individuals conducting research, development, and treatment for patients with FOXG1 syndrome and similar rare disorders, as well as broader initiatives within the rare disease community.
- Funding research for FOXG1 syndrome treatments and cureFunds research projects globally to advance treatments and a cure for FOXG1 syndrome, including preclinical gene replacement therapy research in collaboration with the University of Massachusetts Medical School and drug repurposing research initiated at Tel Aviv University with partnerships in industry and the National Institutes of Health. Supports research at academic institutions such as MIT, Harvard, UMass, and Tel Aviv University.
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Volunteer Engagement and Capacity Support 1 activity
- Engaging volunteers in outreach and capacity buildingEngages volunteers in identifying potential foundation funding opportunities and developing/executing social media campaigns to raise awareness about FOXG1 syndrome and the organization’s mission.
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Charity Golf Tournament Fundraiser 1 activity
- Facilitating community fundraising and donor engagementSupports individuals in organizing community fundraising events such as 5K runs, walk-a-thons, bake sales, and sports tournaments; facilitates birthday donation campaigns and creates personalized GoFundMe pages. Attends supporter-hosted fundraising events to show appreciation and strengthen community ties.
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Rare Genetic Disease Research and Advocacy 1 activity
- Generating disease models for FOXG1 syndrome researchConducts scientific research by generating animal and cell models of FOXG1 syndrome to study disease mechanisms and test potential therapies for eventual translation to human treatments.
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Pediatric Medical Care and Research Support 1 activity
- Providing direct financial assistance to rare disease patients and familiesOffers grants to cover medical expenses, travel and therapy costs, equipment purchases (including wheelchairs, gait trainers, strollers, specialized beds, and adaptive communication devices), and direct payments to caregivers for rare disease patients.
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Direct Mental Health Counseling and Support Services 1 activity
- Providing mental health support for caregivers of rare disease patientsOffers a free mental health program that provides therapy sessions with licensed counselors to support the emotional well-being of caregivers of rare disease patients.
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Familial Support for Rare Genetic Conditions 1 activity
- Supporting families of newly diagnosed FOXG1 syndrome patientsProvides ongoing guidance and emotional support to families of newly diagnosed FOXG1 syndrome patients, helping them navigate care, treatment, and community engagement.
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financials · form 990 · fy2024
revenue
Total revenue$1.78M
Contributions & grants$1.67M94%
Program service revenue$00%
Investment income$108K6%
Other revenue$0
expenses
Total expenses$1.36M
Program expenses89%
Admin / overhead4%
Fundraising8%
Salaries & benefits$241K
Grants paid out$82K
Largest expense lineCompensation
balance sheet
Total assets$3.03M
Cash$2.27M
Investments$0
Liabilities$194K
Net assets$2.84M
Liquid reserves20.0 mo
5 years on record · 2020–2024 · YoY revenue +15.5%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| MEGHAN GEORGE | EXECUTIVE DIRECTOR (TO 10/24) | 40 | $85K |
| JENNIFER TUCHOLSKI | EXECUTIVE DIRECTOR (FROM 11/24) | 40 | $12K |
board members · 8
- ANDREW REICH — DIRECTOR
- ANDREW WIENER — DIRECTOR
- COLLEEN O'BRIEN — DIRECTOR
- DANIEL REICH — CFO
- GARY MELTZER — DIRECTOR
- JESSE REICH — DIRECTOR
- SCOTT REICH — PRESIDENT
- STEVEN GLASS — DIRECTOR
relationships · 17
Who they work with
- BelieveWell Partner — Platform providing licensed mental health counselors for the free therapy program for caregivers.
- Boston Children’s Partner — Collaborates with Boston Children’s Hospital, which operates a FOXG1 clinic, to support medical care for patients.
- Global Genes Partner — References Global Genes as a resource for families navigating rare disease challenges.
- GoFundMe Partner — Partners with GoFundMe to create personalized fundraising pages for supporters.
- Harvard Partner — Funds research projects related to FOXG1 syndrome.
- MIT Partner — Funds research projects related to FOXG1 syndrome.
- National Institutes of Health Partner — Partnership in preclinical drug repurposing research for FOXG1 syndrome.
- National Resource Center for Supported Decision-Making Partner — Provides families with tools from the National Resource Center for Supported Decision-Making to manage care and financial decisions.
- New York Islanders Children's Foundation Partner — Featured community partner collaborating on supported projects.
- Parent to Parent USA Partner — Connects families with Parent to Parent USA for emotional and peer-based family support.
- Special Needs Alliance Partner — Directs families to the Special Needs Alliance for legal and estate planning resources.
- Special Needs Assistance Partner — Recommends Special Needs Assistance as a resource for special needs financial and legal planning.
- Tel Aviv University Partner — Funds research projects related to FOXG1 syndrome.
- Tel Aviv University Partner — Initiated preclinical drug repurposing research for FOXG1 syndrome.
- The Arc Partner — Partners with The Arc to provide families with tools and information for advocating for loved ones with disabilities.
- UMass Partner — Funds research projects related to FOXG1 syndrome.
- University of Massachusetts Medical School Partner — Collaborates on preclinical gene replacement therapy research for FOXG1 syndrome.
strategies · 4
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.
- Grassroots Mobilization for Research and Advocacymethodology: grassroots_community_mobilizationBy activating community-driven fundraising and advocacy, the organization accelerates research and raises awareness for FOXG1 syndrome, because collective action amplifies impact and sustains momentum for rare disease causes where affected individuals cannot self-advocate.
- Integrated Research and Family Support Modelmethodology: integrated care and research supportBy simultaneously advancing targeted research and providing holistic family support—including financial aid and mental health services—the organization improves both scientific progress and quality of life, because sustainable breakthroughs require addressing the full ecosystem of care around rare disease patients.
- Targeted Molecular Intervention Strategymethodology: root-cause_and_downstream_effectsBy pursuing both root-cause correction (e.g., gene therapy) and downstream cellular effects of FOXG1 mutations, the organization increases the likelihood of effective treatment, because a dual-path approach balances long-term cures with near-term symptom mitigation.
- Translational Research Leveragemethodology: translational_research_leverageBy focusing on FOXG1 syndrome as a genetic model, the organization generates insights with potential to advance treatments for more common neurological conditions, because rare monogenic disorders offer a simplified pathway to understanding broader brain mechanisms.