named programs · 3 · from sources
what they call their work
Advocacy and Awareness
Drives awareness, policy, and hope for families affected by Tay-Sachs disease through advocacy efforts and community voices.
Research Funding
Funds global research efforts focused on overcoming GM2 accumulation, increasing Hex-A production, and exploring potential treatments like chaperone drugs, inhibitor substrates, enzyme replacement therapy, gene therapy, and stem cell treatment for Tay-Sachs disease.
Tay-Sachs Clinical Trials Information
Provides information and guidance for families navigating research options and clinical trials for Tay-Sachs disease.
activities · 3 groups
what they do
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Gene Therapy Research for Rare Genetic Disorders 7 activities
- Funding and conducting research for Tay-Sachs and Sandhoff diseasesThe organization funds and conducts research, including gene therapy research, for Tay-Sachs and Sandhoff diseases, with 25 global research efforts funded and potential clinical trials in development.
- Funding and conducting research for Tay-Sachs and Sandhoff diseasesThe organization funds and conducts research, including gene therapy, for Tay-Sachs and Sandhoff diseases, with 25 global research efforts funded and potential clinical trials in development.
- Funding and conducting research for Tay-Sachs and Sandhoff diseasesThe organization funds and conducts research, including gene therapy, for Tay-Sachs and Sandhoff diseases, with 25 global research efforts funded and potential clinical trials in development.
- Funding and support for global Tay-Sachs research initiativesSupports clinical trials and funds global research efforts, having funded 25 research projects worldwide to advance medical knowledge and treatment development for Tay-Sachs disease.
- Gene therapy and clinical research for Tay-Sachs and Sandhoff diseasesConducts and funds gene therapy research and supports clinical trials aimed at developing treatments for Tay-Sachs and Sandhoff diseases, with ongoing scientific progress reported as of 2026.
- Gene therapy and clinical research for Tay-Sachs and Sandhoff diseasesConducts and funds gene therapy research for Tay-Sachs and Sandhoff diseases, with active development of potential clinical trials and reported scientific progress as of 2026. The foundation has funded 25 global research efforts and continues to advance medical knowledge in pursuit of viable treatments.
- Gene therapy research for Tay-Sachs and Sandhoff diseasesConducts and advances gene therapy research for Tay-Sachs and Sandhoff diseases, with ongoing work toward potential clinical trials and reported scientific progress as of 2026.
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Fundraising & Awareness for Neurodegenerative Diseases 4 activities
- Community memorial and awareness exhibitsDisplays artwork created in memory of children lost to Tay-Sachs disease, including pieces by Ralph Keefner, and shares photographs of affected children submitted by their families to raise awareness and honor lives impacted by the disease.
- Fundraising to support Tay-Sachs disease researchRaises funds to support global research initiatives for Tay-Sachs disease, having raised over $7.6 million since 2007.
- Fundraising to support research initiativesHas raised over $7.6 million since 2007 to fund global research efforts targeting Tay-Sachs disease.
- Showcasing art and photographs related to Tay-Sachs diseaseThe organization displays art pieces and photographs submitted by parents of children with Tay-Sachs disease to honor those affected by the disease.
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Uncategorized 1 activity
- Community memorial and awareness exhibitsDisplays artwork and photographs honoring children affected by Tay-Sachs disease, including pieces created in memory of affected family members and submissions from parents.
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financials · form 990 · fy2020
revenue
Total revenue$290K
Contributions & grants$274K95%
Program service revenue$00%
Investment income$16K6%
Other revenue$0
expenses
Total expenses$154K
Program expenses83%
Admin / overhead17%
Fundraising0%
Salaries & benefits$48K
Grants paid out$80K
Largest expense lineCompensation
balance sheet
Total assets$2.11M
Cash$504K
Investments$1.61M
Liabilities$0
Net assets$2.11M
Liquid reserves164.1 mo
1 years on record · 2020–2020
leadership · form 990 part vii · fy2020
who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| RICK KARL | PRESIDENT | 20 | $48K |
board members · 11
- BRIAN PLICK — DIRECTOR
- BRIANNE ANDERSON — DIRECTOR
- CHERYL BABO — DIRECTOR
- DEEPA KODALI — DIRECTOR
- HOLLY MCDONALD — DIRECTOR
- LAURIE TEN BERG — DIRECTOR
- MATT LUNCHICK — DIRECTOR
- NICKI LUCE — DIRECTOR
- ROBBIE SANDOVAL — DIRECTOR
- ROYCE STINGER — DIRECTOR
- TERRY KARL ESQ — DIRECTOR
relationships · 5
who they work with
- CRISPR Partner — Exploring CRISPR technology for gene correction in Tay-Sachs disease research.
- Constant Contact Partner — Emails are serviced by Constant Contact.
- National Tay-Sachs & Allied Diseases Association Partner — Collaborates by referencing NTSAD's list of certified screening locations for carrier testing.
- National Tay-Sachs & Allied Diseases Association Partner — References NTSAD for a listing of certified carrier screening locations and provides their contact information for more information about Tay-Sachs disease and carrier testing.
- Researchers Partner — Families and the foundation partner with researchers to advance Tay-Sachs disease research.