Newly Diagnosed - Infantile/Juvenile

Details

Help for Tay-Sachs, Sandhoff, GM1 and Canavan Disease

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.

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 Diana Pangonis, Director of Family Services at This email address is being protected from spambots. You need JavaScript enabled to view it., or Becky Benson, Family Services and Conference Coordinator This email address is being protected from spambots. You need JavaScript enabled to view it..

  • Access a series of carefully curated Supportive Newsletters to support you in the months following the diagnosis.

  • Read the Newly Diagnosed pages
    Infantile/Juvenile - First Steps -  help getting organized, finding a doctor, and knowing your insurance
    Philosophy of Care - thinking through what's most important
    Free Information Packet - great information on how to manage and cope

  • Contact Diana or Becky anytime with questions, issues, concerns or simply to talk. We are here to listen.

Tay-Sachs, Sandhoff, GM1 and Canavan
Family Resources

  • From managing day-to-day issues to dealing with insurance and service providers, we have assembled much information for families on this website including the best practices and recommendations from other families. These resources can make a positive and loving impact for a child dealing with Tay-Sachs, Sandhoff, GM1 or Canavan disease.
  • Please use the Infantile & Juvenile Support pages as a reference guide for managing symptoms and finding support.