Annual Family Conference

April 2025 | Dallas, Texas

47th Annual Family Conference
April 24-27, 2025 | Dallas, Texas

For the past 47 years, NTSAD’s Annual Family Conference has provided individuals and families living with Tay-Sachs, Canavan, GM1 gangliosidosis, or Sandhoff disease the opportunity to come together for precious moments to learn, lean on each other and share laughter and a few tears. Our time in Dallas was no exception. Our small but might community showed up strong! Highlights included:

  • 246 attendees
  • Eight different countries represented including the U.S.
  • 11 first-time families/individuals attended
  • An insightful New Attendee Orientation Session eased new families into the conference experience
  • 36 attendees of Camp Snuggle and Camp Active children living with Tay-Sachs, Canavan, GM1, or Sandhoff
  • Camp Sunshine and Youth Group for 25 siblings
  • A robust Research Day featuring an industry panel discussion and breakout sessions for each disease to learn more about studies, research, and trials
  • Advocacy Session that encouraged individuals and families to “Raise Their Voice”
  • A Texas BBQ and an incredible country music concert
  • Health and Symptom Management Session for families caring for younger children
  • Sessions for adults living with Late Onset Tay-Sachs or Sandhoff diseases
  • Group-specific support sessions
  • And time to simply connect and support one another in the quiet in-between spaces

Connections & Community

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Mark Your Calendar!

NTSAD 48th Annual Family Conference
April 29 to May 3, 2026
Hyatt Regency Reston
Reston, Virginia

This conference was made possible thanks to our generous sponsors.

Presenting
Anonymous
GNB Charitable Foundation
Doyle Foundation

Believe
Aspa Therapeutics
Sanofi
Laura and Simeon Schindelman

Courage
Christine Chapman and
William Ohle

Hope
Azafaros
Dr. Gerry Cox and Cindy Lemere
Hamilton Company Charitable Foundation
IntraBio
Natera
NTSAD New York Area Fund

Inspiration
Blu Genes Foundation
Curant Health
Jaxson’s Train of Hope
JCR Pharmaceuticals
Lysosomal & Rare Disorders Research & Treatment Center (LRDRTC)
Mathew Forbes Romer Foundation
Myrtelle
Vayle’s Fund

Family
Aaron’s Fund of NTSAD
B Brave Foundation
Bonnie and Barry Davis
in loving memory of Adam*
Monica and Gary Gettleman
Staci Kallish*
The Manning Family
in memory of Dylan
Propel Careers (Lauren Celano*)
Susan* and Alan Roden and Family

*NTSAD Board Member