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.