Join nearly 400 NTSAD families and members of our community from all over the world for NTSAD’s 43rd Annual Family Conference on April 22-25, 2021. The event is held virtually, and it is free to attend. The conference is open to any family coping with a Tay-Sachs, Canavan, GM1 Gangliosidosis, or Sandhoff diagnosis, as well as members of industry, researchers, clinicians, and rare allies. All are welcome!
Whether virtual or in person, NTSAD Conference provides affected adults and children, their families and caregivers, including parents, partners, grandparents, and healthy siblings with a safe space to support and learn from one another, to gain knowledge directly from researchers and industry members working on potential therapies, and to contribute and share their experiences as our community navigates the launch of several clinical trials.
In 2020, the virtual conference was our largest ever with more than 400 registrants including nearly 150 families represented from across the U.S., Canada, and 10 other countries. The Conference focuses on topics that are most valued by our families including:
Support groups for parents, caregivers, adults with Late Onset, and extended family
Symptom and health management
Research session with specific disease breakout groups
Activities for affected children and their siblings
In addition, there are webinars and Zoom meetings held before and after the conference. After receiving incredible support and a sense of belonging to a community, families leave with a sense of hope and empowerment, new friends, and often donations of equipment. The conference is powerful. Many families attend every year to reunite with friends who have become like family, and to support and mentor new families. One mother, after attending her first conference shared,
“You don’t know true grace until you meet a mother holding her dying child in her arms reaching out to you, a total stranger, with love and compassion. I will never be the same.”