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Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Annual Family Conference

NTSAD’s Annual Family Conference

Every year, the Annual Family Conference is an unforgettable experience for rare families and the cornerstone of NTSAD’s compassionate and expert Family Support Services. The Conference provides affected adults and children, their families and caregivers including parents, partners, grandparents, and healthy siblings the rare opportunity to connect with people that truly understand; learn about latest research and symptom management approaches; and support one another.

April 22 – 25, 2021 marks the 43rd Annual Family Conference and the second, virtual conference to ensure the ongoing safety of vulnerable individuals and their families.

In 2020, the virtual conference was the largest ever with more than 400 registrants including nearly 150 families participating from across the U.S., Canada, and 10 other countries.

What to Expect

Whether virtual or in person, the Conference provides families with a safe space to support and learn from one another, to gain knowledge directly from researchers and industry working on potential therapies, and to contribute and share their experiences as our community navigates the launch of several clinical trials.The Conference focuses on sessions that are most valuable to families.

Session topics include:

  • Support groups for parents, caregivers, adults with Late Onset, and extended family
  • Symptom and health management
  • Research session with specific disease breakout groups
  • Bereavement support
  • Commemoration ceremony
  • Activities for affected children and their siblings

In addition, there are webinars and Zoom meetings held both before and after the conference.

The conference is very powerful--many families attend every year to reunite with friends 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.”

In addition to receiving incredible support and a sense of belonging to a community, many families form deep, decades-long friendships. Other families leave with a sense of hope, empowerment, and donations of equipment.

Helping Hand Program: Making the Conference Affordable

When the Annual Family Conference is held in person in cities such as Denver, New Orleans, and Orlando, some families need financial assistance to attend. Each year through the generosity of individuals, foundations, and companies more than $70,000 is raised to provide families with a Helping Hand Grant, which can range from covering the costs of one night at the conference hotel to covering hotel, registration, and travel expenses for the entire family. Each grant application is considered on an individual basis and priority is given to newly diagnosed families, families that have not attended before, and families that have lost their loved one in the past year.

Sponsorship Make a Difference

The NTSAD Annual Family Conference is made possible by the generosity of industry partners, foundations, families and individuals. Sponsorship goes toward family programming and support as well as sustaining NTSAD’s family services. While a virtual conference does not incur traditional travel, hotel, food and beverage costs of an in-person conference, NTSAD does incur expenses for event hosting and production, software, and supplies, including a conference gift box with activities for families.

Annual Family Conferences

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Virtual Conference

View the NTSAD Annual Family Conference Research Exhibit Hall

Please contact Becky Benson, Conference and Family Services Coordinator here with any questions or concerns that are conference related.

2021 Conference Sponsors

COURAGE
HOPE
Laura and Simeon Schindelman
INSPIRATION
DETERMINATION
COMMUNITY
Bonnie and Barry Davis in loving memory of Adam Davis 
The Evan Lee Ungerleider Fund
NTSAD New York Area Fund 
*sponsors as of 4/15/21

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