Adult Late Onset
Tay-Sachs, Sandhoff and GM1 diseases
I have, or someone I love, has just been diagnosed with Late Onset (LOTS) Tay-Sachs, Sandhoff or GM-1, now what?
Take a deep breath and know that you've come to the right place. You've likely been on a long road to diagnosis and now you finally have an answer, but now what?
NTSAD can help you:
- Understand the diagnosis and symptom management options
- Keep updated on research efforts
- Connect with other individuals and families that truly understand
Getting Started:
- Contact Diana Pangonis, Director of Family Services at This email address is being protected from spambots. You need JavaScript enabled to view it. or (800) 906-8723.
- Read the Newly Diagnosed pages
- First Steps for Late Onset- help getting organized, finding a doctor, and knowing your insurance
- Free Information Packet - great information on how to manage and cope, plus register for research
- Share the pdf LOTS Medication Study (60 KB) with your treating physician.
- Contact Diana anytime with questions, issues and/or concerns.