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

2017 Annual Family Conference Update

NTSAD 39th Annual Family Conference Update


The 39th Annual Family Conference took place in Dallas, Texas from March 29 to April 2, 2017. While the conference is always a weekend of research, education, and support this year we were treated to an exceptional display of southern hospitality. Friends and family members came out in droves to welcome us to Texas.

Sixty-eight families were in attendance for a schedule full of sessions, including those for families caring for their children, bereaved families, Late Onset members, grandparents, and healthy siblings.

Highlights included free professional photography from Sarah Mattingly provided by the Soulumination organization, the new NTSAD Rocks! awareness effort, launch of the new #rareGENEius advocacy hashtag, outings to a rodeo, horse ranch, and even both a tour of the AT&T stadium and a game at the Texas Ranger's stadium!

Families heard from researchers in the form of panel discussions regarding gene therapy and the importance of clinical trial readiness. It was recorded this year thanks to DreamBuilders Resources and can be viewed here.

Two long-time NTSAD friends and supporters were recognized for their efforts within the organization:

Rhonda DuVall, mom of Nickolas, who had Tay-Sachs until 2000, was given the Ethel Berkman Power of One award for her continued work as an RN, and head of Camp Snuggle. Rhonda proclaimed her desire to give the affected children in attendance a "real" camp experience citing words from mom, Holly McDonald as her driving force. Holly said she appreciated the work the Camp Snuggle volunteers put into the conference child care because, "This is the only camp Cora will ever attend."

Sarah Mattingly was given the Above and Beyond award for her continued commitment and dedication to serving the families of NTSAD. After undergoing brain surgery in 2005, Sarah began to shift her focus in life. She saw an interview with Lynette Johnson, founder of Soulumination, and first learned about NTSAD. She knew she wanted to help, and signed up to volunteer to photograph the families. In the many years since, Sarah has become a part of the Annual Family Conference experience, and trusted friend to the families of NTSAD.

Families experienced a weekend like no other, where they can come together, open up, share, and connect. Thought we may come as strangers, we quickly become friends, and ultimately leave as family. In parting we say...until next year!

The 40th Annual Family Conference, at the Hyatt Regency Riverfront in Jacksonville, FL, April 12-15, 2018 will feature a Family Reunion for all the families who have ever been a part of NTSAD. We encourage you all to come and join us as we look back on the beginning's of NTSAD, the journey to where we are now, and a look forward into the future.

To read more about the conference, click here for the electronic version of April's issue of "Keeping Up with NTSAD" here.



Reasons to Go

“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.”