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

2016 Annual Family Conference

NTSAD 38th Annual Family Conference

Thursday, April 7 to Sunday, April 10, 2016

Rosen Shingle Creek
9939 Universal Blvd
Orlando, Florida 32819

Set at the beautiful Rosen Shingle Creek in Orlando, Florida,  NTSAD's 38th Annual Family Conference this past April was our biggest and best conference yet!  With 334 attendees, representing 95 families, it was a weekend of research, support, and education to top all others.  We even had international families from Canada, Chile, Germany, Philippines, Ukraine and the United Arab Emirates!  This year we raised the largest amount of Helping Hand Funds in a year to date which enabled us to award a number of families with over $60,000 in Helping Hand Grants.

We were pleased to work in partnership once again with Soulumination to provide beautiful, one-of-a-kind, candid photographs to every family in attendance.  Our new Camp Snuggle and Camp Active program provided a more "camp" like experience for our affected children which incorporated goodie bags and t-shirts to take home, and music, massage, and art therapies as well. 

Two very special women who know NTSAD well were honored for their work.  Dr. Staci Kallish, the 2016 Power of One recipient, was recognized for her work in the genetics field and her truly lifelong dedication to the families and work of NTSAD.  Jean Johnston, the 2016 Above and Beyond recipient, was recognized for her compassionate work with the Tay-Sachs natural history studies at the NIH, and for her time and commitment to our families.

The family support group sessions that focus on health and well being, relationships, and guidance have grown and expanded over the last few years to include meetings specifically designed for parents (both caring for a child and bereaved), grandparents, new family members, veteran families, older siblings, and late onset members so that there truly is something offered for everyone. 

The Families Collaborating in Research session gave all families, regardless of where they were at in their journey a place to share their story as part of a natural history study to help to understand the progression of of our allied diseases, which is critical to designing future clinical trials.  The Research Update session and the GM-1 Workshop were streamed live on the internet for the first time this year so that anyone could watch and be a part of the conference, even if they weren't in attendance.

The togetherness and support shared at the Annual Family Conference is invaluable to our families.  As one conference attendee put it in her own words, "This one weekend gives me the strength I need to get through the rest of the year".  

View Videos: 2016 NTSAD Annual Family Conference Recorded Sessions

Annual Family Conferences

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Donate Today

Download form here and send to:

2001 Beacon Street, #204
Boston, MA 02135
or email to
Patrick Woods at

Why Sponsor?

“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.”