Annual Family Conference
- Details
- Last Updated: Thursday, 10 March 2022 09:00
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.
July 7 - 10, 2022 marks the 44th Annual Family Conference and the first time in three years where we plan to gather again in person.
In 2021, 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 creating a rich conference experience for families from around the world, and opportunities to connect with each and those working toward treatments.
My name is Cary Berman and I have Late Onset Tay-Sachs or (LOTS). When diagnosed by accident with LOTS Â I was 1 of 250 in the world.
These personal stories were written by families having a child diagnosed with an allied disease.