named programs · 4 · from sources
What they call their work
Antisense Oligonucleotide (ASO) Therapy Development
Funds research on ASO-based drugs that modify gene expression through targeted delivery into the cerebrospinal fluid
Drug Repurposing Initiative
Investigates existing FDA-approved drugs for potential new uses in treating rare genetic disorders
Gene Therapy Research
Funds research into gene therapies aimed at correcting protein expression in genetic disorders like FOXG1 Syndrome
Stem Cell Therapy Research
Supports development of stem cell therapies involving genetically modified cells to restore neuronal function
activities · 1 group
What they do
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Genetic and Neurological Disease Research Funding 3 activities
- Administering peer-reviewed grant process for rare disorder researchUses a formal peer review process to evaluate and select research grant applications for funding, ensuring scientific rigor in the pursuit of cures and treatments for rare genetic disorders.
- Directing 100% of public donations to research while operational costs are covered separatelyChannels all donated funds directly into research for cures and treatments of rare genetic disorders by relying on underwriters and separate funding to cover administrative and operational expenses.
- Funding research for cures and treatments of rare genetic disorders, with initial focus on FOXG1 SyndromeFunds scientific research and development programs aimed at curing and treating rare genetic disorders, particularly through gene therapy, stem cell therapy, and drug repurposing approaches, with an initial focus on FOXG1 Syndrome. Supports one- to two-year grants up to $100,000 per year, renewable based on proof of concept.
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financials · form 990EZ · fy2023
revenue
Total revenue$126K
Contributions & grants$125K99%
Program service revenue——
Investment income$1K1%
Other revenue—
expenses
Total expenses$43K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out$370
balance sheet
Total assets$143K
Cash—
Investments—
Liabilities—
Net assets$143K
1 years on record · 2023–2023
leadership · form 990 part vii · fy2023
Who runs it
board members · 1
- DENISE LYNN GANG — BOARD MEMBER
relationships · 28
Who they work with
- Association FOXG1 France Partner — Collaborates in raising funds for FOXG1 Syndrome
- Believe in a Cure Partner — Collaborates in funding research for FOXG1 Syndrome
- Believe in a Cure Partner — Partnering charity collaborating on a drug repurposing project at Tel Aviv University.
- Children's Hospital of Philadelphia Partner — Partnering institution where Dr. Brenda L. Banwell leads research supported by the organization.
- EasyFundraising Partner — UK-based partner that channels donations from online shopping with 7,000+ retailers to the organization.
- FOXG1 Brain Factor 1 Foundation Australia Partner — Collaborates in raising funds for FOXG1 Syndrome
- FOXG1 Deutschland Partner — Collaborates in funding research for FOXG1 Syndrome
- FOXG1 España Partner — Collaborates in raising funds for FOXG1 Syndrome
- FOXG1 Foundation Partner — Collaborates with parent-led charities focused on rare disorders such as FOXG1 Syndrome.
- FOXG1 Research Foundation (FRF) Partner — Collaborates in funding research for FOXG1 Syndrome
- FOXG1 Syndrome Network — Primary focus condition for research funding and treatment development
- FOXG1 Syndrome Partner — Initial focus disorder for research and therapy development
- Facebook Partner — Platform for hosting fundraisers, through which 100% of donations are directed to the organization.
- Instagram Partner — Platform for hosting fundraisers, through which 100% of donations are directed to the organization.
- International FOXG1 Foundation Partner — Collaborates in supporting families and advancing research for FOXG1 Syndrome
- JustGiving Partner — Platform enabling individuals to create fundraising pages, with 100% of donations directed to the organization.
- Perlara Partner — Collaborates with Perlara on research projects, including through scientists Dr. Ethan Perlstein and Dr. Mathura Thevandavakkam.
- Perlara PBC Partner — Funded research institution conducting a drug repurposing project for FOXG1 syndrome.
- Simons Foundation Autism Research Initiative Funder — Awarded a $1.5 million grant to the Lee Lab at the University of Buffalo for FOXG1 research, supported by The CRD Fund's network.
- Tel Aviv University Partner — Partnering institution where Vladimir Yudachev manages research at the Blavatnic Center for Drug Discovery.
- Tel Aviv University Partner — Research institution conducting a drug repurposing project to identify compounds that adjust FOXG1 protein expression.
- University of Buffalo Partner — Funds research on FOXG1 Syndrome conducted at the Lee Lab, University of Buffalo.
- University of California, Davis Partner — Partnering institution where Dr. Jill Silverman and Dr. Joseph Anderson lead research projects supported by the organization.
- University of California, Davis Partner — Research institution developing a stem cell therapy for FOXG1 syndrome using genetically modified hematopoietic stem cells.
- Walmart Partner — Partner for donation through shopping, where Walmart donates a percentage of sales or rounded-up purchases to the organization.
- eBay Partner — Partner platform enabling sellers to direct a percentage of their sales to the organization as donations.
- iGive Partner — Partner that facilitates donations from online shopping with 2,000+ retailers, directing a percentage of sales to the organization.
- underwriters Partner — Commit to annual financing through earmarked donations to cover unavoidable operational costs such as website maintenance, fundraising, legal, and accounting fees.
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.
- Donor-Directed Research Funding Modelmethodology: donor_directed_fundingBy channeling 100% of public donations directly to scientific research—funding operational costs through underwriters and volunteer labor—we maximize research impact and donor trust, accelerating the development of cures for rare genetic disorders.
- Multi-Modal, Mutation-Agnostic Therapeutic Developmentmethodology: mutation_agnostic_therapy_developmentBy funding research across multiple therapeutic modalities—gene therapy, stem cell therapy, repurposed drugs, and antisense oligonucleotides—and focusing on treatments that work regardless of genetic mutation, we increase the likelihood of effective, scalable therapies for all individuals with FOXG1 Syndrome and other rare disorders.
- Parent-Led Advocacy as Research Accelerationmethodology: parent_led_researchBy leveraging parent-led advocacy and funding, we drive urgency, accountability, and strategic focus in research for rare genetic disorders—ensuring that patient needs directly shape scientific priorities.
- Replication of Therapeutic Success Across Disordersmethodology: therapeutic_replicationBy developing treatments for one rare disorder with broad applicability—such as FOXG1 Syndrome—we create a blueprint for treating other rare genetic disorders, scaling impact through cross-condition translation.