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

2022 Conference Sponsorships

The Annual Family Conference is a highlight of the year for NTSAD’s families.  

National Tay-Sachs & Allied Diseases Association (NTSAD) is the oldest patient advocacy organization in the country, serving families and individuals coping with a diagnosis of Tay-Sachs, Canavan, GM1 Gangliosidosis, and Sandhoff diseases. For 65 years, NTSAD has led 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.

NTSAD’s Annual Family Conference

Support the Conference here.

Since 1978, NTSAD has presented the Annual Family Conference to provide families a safe space to support and learn from one another, to gain knowledge directly from researchers and industry members working on potential therapies, and to contribute and share their experiences to further enhance the development of clinical trials. Highlights of the 2021 NTSAD Annual Family Conference, hosted virtually, include:

  • More than 500 people registered.

  • 140 families attended.

  • 26 countries were represented.

  • Largest Research Day ever with 30 presenting researchers and industry members.

As long as it is safe to do so, we plan to gather in person for our 2022 Annual Family Conference. It has been three years since we have hosted an in-person conference. Highlights from the 2019 in-person conference include:

  • More than 300 people in attendance.
  • Approximately 100 families participated.

  • 33 conference sessions were held.

  • 55 families received a Helping Hand Grant to cover some expenses, making attendance

    possible.

  • Camp Snuggle and Camp Active were favorite one-of-a-kind experiences for affected children.

  • The Quiet Reflection and Commemoration ceremonies honored loved ones in personal and meaningful ways.

How does your sponsorship make a difference?

The NTSAD Annual Family Conference is made possible through generous support from individuals, families, foundations, and industry partners. Sponsors of the Conference provide families and individuals a unique experience that includes:

  • Symptom and health management.

  • Community meals, Welcome Reception, Awards Luncheon, and Celebratory Dinner.

  • Family photography sessions with professional photographers.

  • Research Day sessions with disease-specific breakout groups.

  • Camp Snuggle and Camp Active for affected children.

  • Camp Sunshine and Youth Group for healthy siblings.

  • And much more that makes the weekend a fulfilling and memorable experience for families.

Support the Conference here.

 

Please contact Susan Keliher, Director of Development and Communications via email This email address is being protected from spambots. You need JavaScript enabled to view it. or by phone (617) 277-4463 to receive a sponsorship package.

  pdf 2022 Sponsorship Levels and Form (974 KB)  

 

 

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

Sponsor Hope

Donate Today

NTSAD
2001 Beacon Street, #204
Boston, MA 02135
or email to
Susan Keliher at skeliher@ntsad.org

Why Attend?

“For our family attending the conference is like coming ‘home’ to a family that understand and where you don’t have to explain yourself…you just get unconditional love and acceptance.”

“Attending conference changed everything for me. It’s an incredible feeling to bond with other families who understand what you are going through and are willing to hold your hand through it all..... it’s hard to sum it up.  The conference truly changed my life!”

“The support and guidance we received in the meetings was invaluable in helping us to stay on our feet, band together as a family and to continue to support her brother. There was so much comfort in knowing we were with other parents who completely understand the way we are feeling.”

Ways to Support

Sponsoring the conference experience is a wonderful and meaningful way to support families. Below are opportunities to sponsor - every sponsor receives recognition at the conference, in our materials, on the conference app, and on our website. Every gift truly makes a difference!

Youth Programming
* Camp Active & Camp Snuggle
     for Affected Children
* Camp Sunshine for Healthy Siblings
* Youth Group Retreat
* Sibling Workshops

Sessions
* Research Session
* Support Sessions
* Symptom & Home Care Management
* Grief and Bereavement
* Living with Late Onset
* Commemoration

 Additional Opportunities
* Welcome Reception & Dinner
* Research Luncheon
* Awards Luncheon
* Final Reception & Dinner
* Farewell Sunday Brunch
* Soulumination Photography
     Sessions for Families
* Session Filming
* Conference Event App

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