named programs · 4 · from sources
What they call their work
Free Sialic Acid Disorders Consortium
Collaborative network of clinicians and researchers advancing understanding and treatment of FSASD, supported by the foundation.
Mouse Model Research
Supports development and study of mouse models of FSASD to understand disease mechanisms and test potential therapies.
Natural History Study
Clinical research initiative conducted with the US National Institutes of Health to characterize FSASD progression and identify outcome measures for future trials.
iPSC Stem Cell Models
Funds generation and characterization of induced pluripotent stem cell lines from FSASD patients to study cellular pathology and screen treatments.
activities · 5 groups
What they do
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Rare Genetic Disease Research and Advocacy 4 activities
- Building and maintaining a global family network and support infrastructureBuilds and sustains a global community connecting families across 17 countries, maintains a central contact database for caregivers and families, and shares information on community support, research, patient registry, and treatment options.
- Conducting and supporting biomedical research for Salla diseaseConducts and supports research including a natural history study of free sialic acid storage disorder (FSASD) involving eight children, development of a mouse model replicating human disease pathology, generation of patient-derived iPSC lines, and application of base editing to correct the SLC17A5 mutation in patient and mouse cells. Also participates in collaborative research initiatives such as the FSASD Consortium.
- Convening and managing the FSASD Research ConsortiumConvenes and supports the Free Sialic Acid Storage Disorders (FSASD) Consortium, engaging over 40 to 50 researchers from more than 20 global institutions through quarterly meetings to accelerate therapy development for Salla disease and related disorders.
- Sharing organizational expertise to support rare disease advocacyShares experiences and organizational knowledge with new families and emerging foundations to support research advancement, community building, and infrastructure development for rare disease advocacy.
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Disease-Specific Clinical & Patient Education 1 activity
- Disseminating research findings to families and non-specialistsCreates and shares accessible educational materials, including an infographic summarizing findings from the NIH natural history study of FSASD, to inform families and non-specialist audiences about clinical features and research progress.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding research on gene editing and gene therapy for Salla diseaseFunds research partners at institutions including Rady Children's Health and the National Institutes of Health to conduct gene editing research for Salla disease and related free sialic acid storage disorders (FSASD). Also funds translational research projects evaluating candidate therapeutics in pre-clinical models of FSASD.
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Patient and Researcher Conferences 1 activity
- Organizing international family conferences and virtual seminarsOrganizes an international family gathering in 2026 featuring scientific updates and family-focused programming, with virtual access via Zoom for remote participants. Also produces and publishes video seminars on Salla disease and family support through the STAR YouTube Channel.
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Financial Aid and Scholarship Access Programs 1 activity
- Providing financial support for family participation in eventsOffers financial aid, scholarships, and funding to cover registration fees, meeting costs, meals, and event access for families affected by Salla disease attending in-person meetings.
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financials · form 990 · fy2025
revenue
Total revenue$289K
Contributions & grants$289K100%
Program service revenue$00%
Investment income$400%
Other revenue$0
expenses
Total expenses$300K
Program expenses62%
Admin / overhead35%
Fundraising3%
Salaries & benefits$12K
Grants paid out$167K
Largest expense lineProfessional Fees
balance sheet
Total assets$247K
Cash$247K
Investments$0
Liabilities$213
Net assets$247K
Liquid reserves9.9 mo
6 years on record · 2020–2025 · YoY revenue +23.4%
leadership · form 990 part vii · fy2025
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| JESSICA KLEIN FOGLIO | PRESIDENT | 15 | $12K |
board members · 7
- ADAM LEBLANC — VICE PRESIDENT
- CORINNE KAISER — BOARD MEMBER
- DAVID HALPERN — BOARD MEMBER
- DORIS PETER — BOARD MEMBER
- KATHRINE ROA — BOARD MEMBER
- KENNETH KLEIN — TREASURER
- MICHAEL FOGLIO — SECRETARY
relationships · 15
Who they work with
- Albert Einstein College of Medicine Rose F. Kennedy Intellectual and Developmental Disabilities Research Center Partner — Collaborates with the IDD Gene Team to support research and community-building for rare genetic conditions.
- Chan Zuckerberg Initiative Funder — Provided grant funding that supports scholarships covering meeting costs, event access, and meals for families attending the conference.
- Dr Sarah Goebel Partner — Contact point for researchers interested in joining the Free Sialic Acid Disorders Consortium.
- FSASD Consortium Coalition — STAR Foundation supports and collaborates with the Free Sialic Acid Disorders Consortium, a group of clinicians and researchers focused on FSASD.
- FSASD Consortium Network — Consortium of approximately 40 researchers from over 20 institutions collaborating on FSASD therapy development.
- FSASD Consortium Partner — Collaborates with the FSASD Consortium on research into Salla disease, including development of disease models
- FSASD Consortium Partner — Collaborative network of researchers supported by the foundation to advance understanding and treatment of Free Sialic Acid Storage Disorders.
- National Institutes of Health Partner — Research partner collaborating on gene editing techniques
- RARE-X Partner — Partnering to build a data collection program for Salla families to accelerate research and therapy development.
- Rady Children's Health Partner — Research partner collaborating on gene editing techniques
- STAR Foundation Network — Member of the FSASD Consortium network focused on advancing research for Free Sialic Acid Storage Disorders.
- Scientific Advisory Board Partner — Scientific leaders collaborating with STAR to shape its research strategy.
- Splash Car Wash Partner — Sponsor of the RARE community event
- US National Institutes of Health Partner — Collaborated on the Natural History Study of free sialic acid storage disorder.
- YouTube Network — Hosts the Family Seminar Series on the STAR YouTube Channel.
strategies · 3
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.
- Community-Engaged Research Modelmethodology: community-engaged_researchBy uniting researchers, families, and advocates in shared knowledge exchange and collaborative structures, the organization drives faster therapeutic development because lived experience and scientific inquiry jointly identify priorities and validate progress.
- Integrated Research and Support Ecosystemmethodology: integrated_research_and_supportBy combining medical research, patient education, public awareness, and family network development, the organization accelerates progress on Salla disease because synergistic support systems amplify both scientific and community outcomes.
- Targeted Therapeutic Development via Genetic Homogeneitymethodology: targeted-therapy-developmentBy focusing on the high prevalence of a single mutation (R39C) among Salla disease patients, the organization enables more efficient drug development because a genetically homogeneous population reduces complexity in preclinical modeling and clinical trial design.