Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related 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

Join us for three days of support, empowerment and knowledge. You will meet others who understand and the professionals who are committed to being there for all of us. We hope you can make it! 

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

Gifts to support the conference experience can be made here.


(includes all meals from Thursday lunch to Sunday brunch)

Hotel Reservation

Deadline: March 20, 2019

Adult: $320 (ages 13 and up)
Child: $150 (ages 3-12)
Affected Children are free

Click here to register for the conference.



Hotel Rate: $169 (including hotel tax)

Click here to make a hotel reservation.

If you need an ADA room with a roll-in shower, please email and alert Risa Asnen This email address is being protected from spambots. You need JavaScript enabled to view it..


Getting to Raleigh


Important Deadlines


Raleigh Durham International Airport (RDU), 11 miles 

Transportation Options

Complimentary shuttle service upon request, Sunday-Monday
7:00am – 10:00pm (919) 781-7000

Suggest Alternate Transportation: North Hills Transportation; Reservation Required
(919) 940-1181

Estimated Cab Fare each way: $35.00

Travel Resources

Mercy Medical Airlift

National Patient Travel Center

Miracle Flights


Helping Hand Grant Applications Due
Rolling Admission until February 1, 2019 (If you've missed the deadline, contact our Conference Coordinator This email address is being protected from spambots. You need JavaScript enabled to view it., or Director of Family Services This email address is being protected from spambots. You need JavaScript enabled to view it..)

Conference Registrations Due
March 20, 2019

Hotel Reservations Due
March 20, 2019





Why Attend?

“For our family attending the conference is like coming ‘home’ to a family that understand and where you don’t have to explain yourself…you just get unconditional love and acceptance.”

“Attending conference changed everything for me. It’s an incredible feeling to bond with other families who understand what you are going through and are willing to hold your hand through it all..... it’s hard to sum it up.  The conference truly changed my life!”

“The support and guidance we received in the meetings was invaluable in helping us to stay on our feet, band together as a family and to continue to support her brother. There was so much comfort in knowing we were with other parents who completely understand the way we are feeling.”

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