irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $31KHOSTED A BI-ANNUAL CONFERENCE FOR THOSE SUFFERING FOR GALACTOSEMIA AS WELL AS MEDICAL PROFESSIONALS AND RESEARCHERS.
- #2 $89KFUNDING RESEARCH GRANTS TO MEDICAL PROFESSIONAL/RESEARCH HOSPITALS.
named programs · 3 · from sources
What they call their work
Galactosemia Foundation Conference
Bi-annual event that brings together patients, families, medical professionals, and researchers to share knowledge, research updates, and support strategies for living with galactosemia.
Galactosemia Toolkit for Newly Diagnosed Families
Educational guide providing resources and tools to help new families navigate diagnosis, treatment, and advocacy.
Research Grant Funding
Provides financial support for medical and scientific research aimed at understanding and treating galactosemia.
activities · 5 groups
What they do
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Rare Genetic Disease Research and Advocacy 3 activities
- Advocates for patient perspectives in regulatory review processesEngages in advocacy to ensure patient voices are included in regulatory evaluations, such as the FDA's review of govorestat (AT-007), a potential first treatment for galactosemia.
- Disseminates disease-specific medical information to patients and familiesProvides comprehensive information about galactosemia, including associated complications such as cataracts, speech disorders (e.g., apraxia), and primary ovarian insufficiency, to help families manage health outcomes and coordinate care.
- Provides educational resources and support for newly diagnosed familiesOffers an informational toolkit and outreach program for families newly diagnosed with galactosemia, providing tools, resources, and connections to clinicians and researchers to support early education and care planning.
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Genetic and Neurological Disease Research Funding 1 activity
- Funds medical and scientific research on galactosemiaProvides research grants to medical professionals and research institutions to support studies on galactosemia, including topics such as nutrition, diet, therapy, neurological deficits, and premature ovarian failure.
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Patient and Researcher Conferences 1 activity
- Organizes biennial conferences for the galactosemia communityHosts a biennial conference for individuals affected by galactosemia, medical professionals, and researchers to provide education, support, and advocacy. The next conference is scheduled for July 16–18, 2026.
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Organizational Newsletter Production and Distribution 1 activity
- Publishes the Galactosemia Gazette newsletterProduces and publishes the Galactosemia Gazette, an online newsletter released twice annually, to share updates, research, and community news with the galactosemia community.
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Fundraising for Community and Charitable Initiatives 1 activity
- Supports individual fundraising initiatives for galactosemiaProvides capacity-building support and promotional resources to individuals and groups organizing fundraisers for galactosemia-related causes, helping to amplify community-driven funding efforts.
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financials · form 990 · fy2024
revenue
Total revenue$386K
Contributions & grants$389K101%
Program service revenue$7K2%
Investment income$80%
Other revenue$-10K
expenses
Total expenses$351K
Program expenses94%
Admin / overhead6%
Fundraising0%
Salaries & benefits$0
Grants paid out$89K
Largest expense lineFacilities
balance sheet
Total assets$819K
Cash$815K
Investments$0
Liabilities$0
Net assets$819K
Liquid reserves27.9 mo
3 years on record · 2020–2024 · YoY revenue -19.2%
leadership · form 990 part vii · fy2024
Who runs it
board members · 9
- BRITTANY CUDZILO — VICE PRESIDENT
- GILLAIN SAPIA — MEMBER AT LARGE
- JESSICA TAYLOR — TREASURER
- JODI SOLARI — COMMUNICATIONS LEAD
- KEITH TOPPER — MEMBER AT LARGE
- KELLY FOLEY — MEMBER AT LARGE
- MARY LEIMBACH — SECRETARY
- NICOLE CASALE — PRESIDENT
- SCOTT SAYLOR — MEMBER AT LARGE
relationships · 14
Who they work with
- Brittany Cudzilo Partner — Team lead of the Outreach Team, contributing personal experience with galactosemia to support families.
- Choi Shepard Partner — Member of the Galactosemia Foundation Research Team
- Dan Lambert Partner — Member of the Galactosemia Foundation Research Team
- Galactosemia Foundation Inc. Partner — Non-profit charitable organization advocating for people with galactosemia and their families.
- Hyatt Regency Aurora-Denver Partner — Host venue for the 2026 Galactosemia Foundation Conference.
- Jodie Solari Partner — Team leader and newsletter editor for the Galactosemia Foundation's communications team
- Kelley Foley Partner — Member of the Galactosemia Foundation Research Team
- National Institute of Mental Health Network — Referenced as a source for information on learning disabilities.
- Nicole Casale Partner — Team Lead for the Conference Team, responsible for leading conference planning and execution.
- Not specified Partner — Networks with professionals to advance treatment and research for Galactosemia.
- Scott Saylor Government — Primary contact for individuals interested in joining the Fundraising Team.
- Scott Saylor Partner — Team Lead of the Fundraising Team for the Galactosemia Foundation
- Therese Cozzo Partner — Member of the Galactosemia Foundation Research Team
- U.S. Food and Drug Administration Government — Engages with the FDA to advocate for patient perspectives in the regulatory review of potential galactosemia treatments.
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.
- Network-Bridging for Collaborative Advancement 320 orgsmethodology: network_bridgingBy connecting families, clinicians, and researchers, the Foundation improves information sharing and accelerates care and research advancements for galactosemia, because cross-sector collaboration enables faster translation of knowledge into practice and stronger support ecosystems.shared approach: Venture Philanthropy Model →
- Research-Driven Improvement of Patient Outcomes 320 orgsmethodology: research-driven_improvementBy funding a broad range of scientific and medical research, the Foundation aims to improve the lives of individuals with galactosemia, because sustained investment in research leads to clinical breakthroughs and better long-term health outcomes.shared approach: Venture Philanthropy Model →
- Early Intervention and Dietary Management to Prevent Complications 36 orgsmethodology: early_interventionBy promoting early identification and strict adherence to a galactose-restricted diet, the Foundation helps prevent acute complications like cataracts and supports better developmental outcomes, because timely metabolic intervention mitigates irreversible damage.shared approach: Research-Advocacy Integration →
- Family Empowerment Through Evidence-Based Education 5 orgsmethodology: evidence-based_educationBy providing research-informed educational resources and direct outreach, the Foundation enables families to advocate effectively and navigate care, because accurate, timely knowledge builds confidence and improves health management outcomes.shared approach: Knowledge Empowerment →