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
- Access a series of carefully curated newsletters here 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
- 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.