NTSAD’s 43rd Annual Family Conference

Thursday, April 22 to Sunday, April 25, 2021

Connection. We need it more than ever. And that’s what NTSAD is all about. Each year, the family conference provides a lifeline to families. Our 43rd Annual Family Conference held virtually and seamlessly as we connected, Heart to Heart, Home to Home

The conference was our largest ever with more than 500 people registered. Our community was made even stronger by global attendance with 26 countries represented.

The NTSAD community-- our family of patients, parents, children, grandparents, siblings, caregivers, partners, researchers, and industry experts-- came together--providing care-giving tips, updates on research and clinical trials, and sharing their experiences and their grief. 

Our Conference in a Box was a special delivery for our U.S. families, full of fun, useful, and interactive items to use throughout the conference and beyond. 

The Two Disabled Dudes, Sean and Kyle brought their special brand of heart and warmth to our Welcome Session as our Keynote speakers along with a panel of NTSAD parents and board members. 

In sessions we learned the latest developments in research and clinical trials, how to effectively advocate for yourself and your loved one, the importance of carrier screening, and so much more.

Together we honored all the children and adults who fight with grace and to all the individuals we have lost and memorialized on Sunday during our moving Commemoration Ceremony.

You're welcome to light a candle in your home and watch the ceremony here and the tribute to our loved ones here.

Thank you to all of the speakers and session facilitators, researchers, volunteers, and conference committee members who led and planned an incredible and first-ever virtual conference. We will further highlight your incredible work by posting recordings of select sessions on the NTSAD website. Access the recordings for the Canavan, GM1, GM2 and Late Onset research sessions below.

Most of all, we thank our families. You inspire us every day. And no matter what---Together We Are All Rare, All Family, and ALWAYS CONNECTED. 

We sincerely thank everyone who attended. We thank you for your commitment to research and identifying effective treatments, your dedication to each other and NTSAD families everywhere. 

Wanting more connection and more heart? Watch the two videos we shared during the opening and closing ceremonies of the conference that feature several, beautiful NTSAD families. 

Enjoy our powerful opening video that launched the conference

This touching and beautiful video closed our conference.

Thank you for being a vital part of our community. Yesterday. Today. And for a better tomorrow.