Help is on the Way

Someone you love has been diagnosed with a disease without a treatment or cure. You don't know what to do. NTSAD's Family Services Team is here to help you get what you need in this moment in time. 

Help us get to know you and your family by completing this form here

Care Plan Template

This template can help you consolidate information about your child or loved one to make it easier to share with doctors or if you must visit the emergency room. If you see something missing, please contact Diana at This email address is being protected from spambots. You need JavaScript enabled to view it.. We consider this a document that can grow and change to accommodate the needs of families. Download  document here (315 KB) .

Courageous Parents Network (CPN)

COURAGEOUS PARENTS NETWORK empowers and supports parents caring for children with life-threatening illness by using Web and Mobile to: (1) provide parents with coping tools to promote resiliency ; (2) bring parents into 24/7 community with each other to lessen isolation; (3) educate medical providers about the psycho-social and emotional needs of these families; (4) promote pediatric palliative care. Our vision is that the family’s journey is one of minimal regret and maximum healing.

Rare Siblings Project

This project is for siblings, by siblings: Siblings sharing their experience to help other siblings.

It is also for parents, by parents: Parents sharing their perspective and experiences to help other parents who wonder and worry about the challenges of caring for all of their children while one child in particular requires more medical care.

It is also for medical providers who care for these families and wish to hear more about the family experience.

The Quinn Madeline Foundation
Awareness for hope. Memories for life.

The Quinn Madeleine Foundation's mission is to aid in the prevention of - and support research on treatment and a cure for - Niemann-Pick Disease Type A, and to facilitate memorable experiences for children under age 3 who have been diagnosed with a terminal or life-threatening illness.

The foundation has generously sponsored Camp Snuggle at the NTSAD Annual Family Conference and we are grateful to them for honoring Quinn's life and legacy in this profound way. They have also given our families the opportunity to create memories with their children through Quinn's List.

The Mighty
We're Partnering With The Mighty!

Tay-Sachs Disease | The Mighty Partnership | National Tay-Sachs & Allied Diseases Association (NTSAD)

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We're dedicated to helping people with Tay-Sachs disease in their lives. With this partnership, we'll be able to help even more people. 

We encourage you to submit a story to The Mighty and make your voice heard.