You’re Not Alone – We’re Here For You

Providing reliable information and connections to people with Tay-Sachs, Canavan, GM1, and Sandhoff diseases since 1957

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 professional Family Services Team
  • Help with navigating a diagnosis and providing care
  • 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

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.

Start Here

Receiving a rare diagnosis can feel overwhelming and it’s hard to know where to begin. We recommend starting with the following action steps:

  • Build a Care Team
    Find a clinicians and specialists who make you feel comfortable, answer your questions, listen to your concerns, and support your care goals. Learn more by visiting Navigating a Diagnosis.

  • Create a Philosophy of Care
    Think about your goals for care and health management, and write a care plan to share with healthcare providers. Learn more by visiting Navigating a Diagnosis.

  • Connect with the NTSAD Community
    Fill out our First Connections form for an invitation to be able to access additional Family Services resources.

  • Get Support for the Whole Family
    Visit our Sibling Support page and email our Family Services Team for information, tools, and resources picked especially for your family’s unique needs.

Here to Provide Support for Families and Individuals, Every Step of the Way

Our Family Services Team is here to listen and help you as you take these steps. You’re welcome to contact us at any time.

Our Family Services Team

Diana Jussila

(formerly Pangonis)

Director of Family Services

Since 1995, Diana has been supporting individuals and families as they navigate the realities of living with a rare disease.

Email Diana (

Becky Benson

Family Services Manager

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.

Email Becky (

Reach out to us and let us know how we can help.

Our Services & Support Programs

Navigating a Diagnosis

Learn how to make your care plan, build a care team, and communicate with confidence.

Supporting Siblings

Help siblings understand what it means to have a brother or sister with a rare disease.

A safe space to connect with people who truly understand coping with a rare diagnosis.

Complete the First Connections form to join the private Facebook community where you can ask questions, share experiences, and get support.

Resource Library

Browse our library of reliable and accurate information about rare diseases.

Carrier Screening and Family Planning

Carrier Screening

Prepare for an appointment with your physician or genetic counselor.

Family Planning

Learn about your options so you can make informed decisions.