Newly Diagnosed - Infantile/Juvenille

My child, grandchild or someone I love has just been diagnosed with Classic Infantile or Juvenile Tay-Sachs, Sandhoff, GM-1 or Canavan; now what? Take a deep breath and know that you’ve come to the right place. The day you received the diagnosis might have been the worst day of your life. We understand! You are not alone! 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
  Philosophy of care - thinking through what's most important
  Free Info Packet - great information on how to manage and cope
  Register for research
  Become a member - join NTSAD for even more support
  
  
• Contact Kim anytime with questions, issues, concerns or just to chat!