Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

2020 Virtual Family Conference

NTSAD 42nd VIRTUAL Annual Family Conference

Thursday, May 28 to Sunday, May 31, 2020

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 42nd Annual Family Conference was held virtually and seamlessly.  We had lots of connection and heart. All heart. 

The conference was our largest ever, with nearly 400 people registered. Our community even stronger. 

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. 

For four, memorable days, we defied distance. People participated from across the U.S. from Alaska, California, Florida, Illinois, Massachusetts, New York, Pennsylvania, and Washington, and from around the globe including Brazil, Canada, France, Germany, Switzerland, Singapore, and more! We had many first-time attendees, including people who lost loved ones many years ago and found comfort and compassion within the NTSAD community. 

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. 

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.

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 each session on the NTSAD website later this week. 

We also thank our lead sponsor Sanofi Genzyme and all of our dedicated sponsors for their generous support, enabling us to broaden our reach and meaningfully engage our community.

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

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.

Finally, at the conference, Board President Staci Kallish announced NTSAD's new mission statement to better reflect our commitment to identifying effective treatments, uniting our efforts, and remaining focused on serving families. 

NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

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

Annual Family Conferences

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Thank You

Speakers, Facilitators and Moderators

Gerald Cox, MD, PhD

Bonnie Davis

Florian Eicher, MD

Taylor Fields

Terrence Flotte, MD

Amber Franzen

Dominic Gessler, MD

Monica Gettleman

Heather Gray-Edwards, PhD

Staci Kallish, DO

Judy Kaplan

Jodie Lahman

Genevieve Laforet, MD, PhD

Heather Lau, MD

Dan Lewi

Jill MacDougall, MPH

Brian Manning

Oralea Marquardt

Doug Martin, PhD

Holly McDonald

Parag Meswani, PharmD

Timothy Olson

Samantha Parker

Gary Romano, MD, PhD

Jamie Ring

Kevin Romer

Andrew Schaefer

RA Session

Patroula Smpokou, MD, FACMG

Cynthia Tifft, MD, PhD

Jagdeep Walia, MD, FRPPC

Rachel Witten, MD

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