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

2022 Annual Family Conference

NTSAD 44th Annual Family Conference

Thursday, July 7 to Sunday, July 10, 2022

Renaissance Denver Central Park Hotel
3801 Quebec St
Denver, CO 80207

Register Now.

Apply for a Helping Hand Grant here.

Support the Conference.

Reserve a hotel room.

We are hopeful that we can gather again this summer for a long weekend filled to the rim with support, togetherness, tears, laughter, and hope. Any family faced with the diagnosis of Canavan, GM1 gangliosidosis, Sandhoff or Tay-Sachs disease is welcome. 

From sessions on the latest research and clinical trials, to those offered on support, education, and advocacy, our families learn, share, and spend their time with others who are walking a similar path.  Whether in sessions, during meals, enjoying the Family Lounge, or just out by the fire, the sense of community is always an amazing sight.

Highlights from our last in-person gathering at the 2019 NTSAD Annual Family Conference include:

  • Over 300 people attended
  • Almost 100 families were able to join us
  • We offered 33 conference sessions
  • 55 families were allocated a Helping Hand Grant to enable their attendance
  • Free photo shoots for 50 families, courtesy of Soulumination
  • Camp Snuggle and Camp Active were again one-of-a-kind experiences for our affected children
  • The Quiet Reflection and Commemoration Ceremonies honored our loved ones in very personal and meaningful ways
  • The healthy sibling Youth Group ventured out to Adventure Landing and the North Carolina Museum of Science and Natural History

Keeping Families Safe

Due to the on-going pandemic, all individuals who participate in NTSAD’s 2022 Annual Family Conference must comply with the following COVID vaccination and mask guidelines:

For the safety of the entire NTSAD community, all conference participants who meet age eligibility for COVID vaccination are strongly encouraged to be fully vaccinated per CDC guidelines by the start of the conference.  For those individuals aged two and older who are unvaccinated, proof of a negative PCR test taken within 48 hours prior to your arrival at the conference is required.

Proof of vaccination will be required at the time of online registration and/or during the check-in process prior to the start of the conference. In addition, due to the vulnerability of the individuals and families we serve, masks will be encouraged in all NTSAD sponsored spaces including sessions, camps, the Family Lounge, and during meals (whenever not actively eating or drinking) for all individuals over two years of age who can safely wear a mask.

These guidelines are subject to change based on the status of the pandemic and CDC guidelines.  To ensure the safety of the vulnerable population we serve, NTSAD leadership will follow recommendations from its medical advisors and current CDC, state, and local guidelines. 

Conference Features

  • Sponsorships

    Sponsorships

    Support the conference experience for families faced with Canavan, GM1 gangliosidosis, Sandhoff and Tay-Sachs. Contact Susan Keliher, Director of Development, for more Information. Read More
  • Helping Hands

    Helping Hands

    Learn more about the Helping Hand Grants, how applying for a grant can help attend the conference, and what to expect in the process. Apply for a grant today! Read More
  • Sessions

    Sessions

    A snapshot of the sessions, childcare, and meals planned for the 2022 Annual Family Conference. A detailed timeline will be shared soon. A reminder that session topics are subject to change. Read More
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2022 Sponsors

PRESENTING

The Doyle Foundation

Sanofi

Believe 

Anonymous

Drs. Roselyn and Edwin Kolodny, Rare Humanitarian 

Sio Gene Therapies

Courage

Laura and Simeon Schindelman 

Hope 

Aspa Therapeutics, a BridgeBio Company

Azafaros

Christine Chapman*  

Gerald Cox MD, PhD* 

EveryLife Foundation

The Hamilton Company Charitable Foundation

The Cameron & Hayden Lord Foundation*

Lysogene

In Memory of Dylan Manning and Stewart Altman

Mathew Forbes Romer Foundation*

Passage Bio 

Joyce and Edward Ratner 

Inspiration

Amicus Therapeutics

Blu Genes Foundation

Judy Kaplan

Recursion Pharmaceuticals

Myrtelle 

Connection

Staci Kallish* and Chris Beer

Propel Careers* 

Friends

B Brave Foundation*

Martha* and Ron Kleinman

*NTSAD Board Member

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