Support for Families and Individuals
Have you or a member of your family been diagnosed with Tay-Sachs, Canavan, GM1, or Sandhoff disease?
We’re here to listen and offer support.
We also provide support for families and individuals with the following:
- One-on-one, personalized support with the Director of Family Support
- Help with navigating a diagnosis and providing care with disease specific information
- Current Clinical Trial/Research Information
- Connection to other individuals and families in our Community
- Support for the whole family, including healthy siblings
- Virtual and in-person programming, including the Annual Family Conference and regional meet-ups
- Monthly Newsletters
- Access to Family Support Funds (Benton’s Family Assistance Fund and Emma’s Fund for Families)
- Newly Diagnosed Family Toolkit
- Social Media and Zoom Support Groups
- Bereavement Support
If you’re looking for information on a specific disease, please visit our Diseases page.
Where Do I Begin…
Our Family Services Team is here to help answer your questions, share relevant information, and connect you with our Community. Our services are always at no cost to you, and we are looking forward to meeting you.
Please take a couple of minutes to fill out our First Connections form (we do not sell or share information). After completing the form, you’ll be able to access additional Family Services resources.
Personalized Family Support
Becky Benson
Director of Family Support
Since 2014, Becky has been providing personalized support to the NTSAD Community. She joined the Community in 2009 after her daughter, Miss Elliott, was diagnosed with Tay-Sachs.
