Newly Diagnosed

I 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 you finally have an answer, but now what? We understand! NTSAD is dedicated to Finding a Cure & Caring for Families.

We can help you:

• Understand the diagnosis & symptom management options
• Keep updated on research efforts
• Connect with other families that truly understand

Getting Started:

• Contact Kim Kubilus, Director of Family Services at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or 800.906.8723.
  
• Read the Newly Diagnosed pages
• First Steps -  help getting organized, finding a doctor, and knowing your insurance
  Free Info Packet - great information on how to manage and cope, plus register for research
  Become a member - join NTSAD for even more support
• Share the LOTS Medication Study with your treating physician!
  
• Contact Kim anytime with questions, issues, concerns or just to chat!