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FOXG1 Research Inc
Sands Point, NY · EIN 825300929 · Form 990 · FY2025 · NTEE G05 · Voluntary Health Associations · Medium ($1M-$10M)
revenue
$6.9M
expenses
$6.4M
net assets
$6.1M
employees
0
volunteers
7
program ratio
95%
mission · from form 990

Find a cure, find treatments, provide therapeutics, advocating for patients, and supporting families for FOXG1 Syndrome.

profile · synthesized from sources

FOXG1 Research Inc is a nonprofit organization based in Sands Point, NY, focused on advancing research and finding treatments for FOXG1 Syndrome, a rare genetic neurological disorder. The organization supports affected families, advocates for patients, and works to develop therapeutics. Its mission centers on curing the syndrome and improving the lives of those impacted.

named programs · 3 · from sources

What they call their work

FOXG1 Research Initiative
Coordinates scientific research to understand the genetic mechanisms of FOXG1 Syndrome and identify potential therapeutic targets
Family Support Network
Provides resources, counseling, and community connections for families affected by FOXG1 Syndrome
Patient Advocacy Program
Advocates for patients with FOXG1 Syndrome by engaging with policymakers, healthcare providers, and research institutions
activities · 2 groups

What they do

  • Rare Genetic Disease Research and Advocacy 3 activities
    • Advocating for patients with FOXG1 Syndrome
      Engages in advocacy efforts on behalf of individuals with FOXG1 Syndrome to promote awareness, policy change, and patient rights.
    • Conducting research for a cure and treatments for FOXG1 Syndrome
      Engages in scientific research aimed at discovering a cure and developing treatments for FOXG1 Syndrome, with the goal of advancing therapeutic options.
    • Providing therapeutics for FOXG1 Syndrome
      Delivers or facilitates access to therapeutic interventions for individuals affected by FOXG1 Syndrome, supporting clinical or symptomatic management.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Supporting families affected by FOXG1 Syndrome
      Provides resources, guidance, and assistance to families impacted by FOXG1 Syndrome to help them navigate medical, emotional, and logistical challenges.
financials · form 990 · fy2025
revenue
Total revenue$6.87M
Contributions & grants$6.60M96%
Program service revenue$139K2%
Investment income$131K2%
Other revenue$-5K
expenses
Total expenses$6.43M
Program expenses95%
Admin / overhead4%
Fundraising0%
Salaries & benefits$208K
Grants paid out$652K
Largest expense lineProfessional Fees
balance sheet
Total assets$6.35M
Cash$2.77M
Investments$933K
Liabilities$234K
Net assets$6.12M
Liquid reserves6.9 mo
5 years on record · 2020–2025 · YoY revenue +3.9%
leadership · form 990 part vii · fy2025

Who runs it

paid leadership · 1
NameTitleHours/wkCompensation
Nicole Johnson Executive Director 40 $208K
board members · 4
  • Bram van Den Bergh — Treasurer
  • Magdelena Labbe — Secretary
  • Nasha Fitter — CEO and Chair
  • Ryan Phillips — CFO
strategies · 1

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.

  • Integrated Research and Support Model
    methodology: integrated_research_and_support
    By combining research, therapeutic development, patient advocacy, and family support, we accelerate progress against FOXG1 Syndrome because synergies between scientific inquiry and lived patient experience improve both discovery and implementation.