Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

2019 Annual Family Conference

NTSAD 41st Annual Family Conference

Thursday, April 11 to
Sunday, April 14, 2019

Raleigh Marriott Crabtree Valley
4500 Marriott Dr.
Raleigh, NC 27612

To explore the conference and read about the sessions that took place, visit the conference site here.

It was a weekend filled to the rim with support, togetherness, tears, laughter, and hope. 

From the sessions on the latest research, to those offered on support, education, and advocacy, our families came together to learn, share, and spend their time with others who are walking a similar path.  Whether in sessions, during meals, enjoying the Family Lounge, or just out by the fire, the sense of community is always an amazing sight; attached is a snapshot of a few of our families from this year.

Highlights of the 2019 NTSAD Annual Family Conference include:

  • Over 300 people attended
  • Almost 100 families were able to join us
  • We offered 33 conference sessions
  • 55 families were allocated a Helping Hand Grant to enable their attendance
  • Free photo shoots for 50 families, courtesy of Soulumination
  • Camp Snuggle and Camp Active were again one-of-a-kind experiences for our affected children
  • The Quiet Reflection and Commemoration Ceremonies honored our loved ones in very personal and meaningful ways
  • The healthy sibling Youth Group ventured out to Adventure Landing and the North Carolina Museum of Science and Natural History

Many people came together to make this weekend possible and we thank each and every one of them including our generous sponsors of the conference and the Helping Hand Grant Fund.


Conference Research

Dr. Marc Patterson's presentation at the 2019 NTSAD Annual Family Conference including Dr. Florian Eichler.

Ways to Support

Sponsoring the conference experience is a wonderful and meaningful way to support families. Below are opportunities to sponsor - every sponsor receives recognition at the conference, in our materials, on the conference app, and on our website. Every gift truly makes a difference!

Youth Programming
* Camp Active & Camp Snuggle
     for Affected Children
* Camp Sunshine for Healthy Siblings
* Youth Group Retreat
* Sibling Workshops

* Research Session
* Support Sessions
* Symptom & Home Care Management
* Grief and Bereavement
* Living with Late Onset
* Commemoration

 Additional Opportunities
* Welcome Reception & Dinner
* Research Luncheon
* Awards Luncheon
* Final Reception & Dinner
* Farewell Sunday Brunch
* Soulumination Photography
     Sessions for Families
* Session Filming
* Conference Event App