Imagine & Believe

 

On November 7th, the NTSAD community came together for a truly unforgettable night filled with conversation, connection, and celebration. Our heartfelt thanks are extended to each of you who contributed to the success of Imagine & Believe.

It was wonderful to reconnect with old friends and make new ones, honor the Buryk family for their remarkable contributions to advancing research, and raise much-needed funds to support NTSAD’s mission. Together, we are making significant strides in the global fight against Tay-Sachs, Canavan, GM1, and Sandhoff disease.

Funds raised at Imagine & Believe help us continue to drive research forward, provide support to those who need it most, and honor the legacy of those we’ve lost to these devastating conditions.

We are deeply grateful for the support of our community—from the individuals and families we serve to our donors, volunteers, Board of Directors, scientific advisors, and corporate partners.

Thank you all for your unwavering dedication and vital support!

Honoring the Buryk Family

Each year at NTSAD’s signature fundraising event, Imagine & Believe, we recognize an individual or group who makes a significant and positive impact on the rare disease community.

We proudly announce this year’s honorees are Buryk family members–parents Alexis and Bill, and twindaughters Katie and Allie, who both have Late-Onset Tay-Sachs disease, and eldest daughter Elizabeth and her husband Jonathan.

In 2014, the Buryk family launched the Katie & Allie Buryk Research Fund at NTSAD. To date, the Buryk Research Fund has raised nearly $1,100,000 for research for Late Onset Tay-Sachs and Sandhoff (LOTSS) diseases with the help of more than 2,400 donors. You may have seen the Buryk Family’s powerful ad which runs quarterly in The New York Times.

When launching the Katie & Allie Buryk Research Fund a decade ago, Katie shared what motivates her, “I have decided to go public and try to raise money, awareness and mount a search for a cure. Sure, it’s for me and Allie, but it is also for infants and kids who aren’t as lucky as we are. And it’s for the families who must embark on this difficult, sad, and baffling journey.”

The Buryk Research Fund has supported research grants, helped NTSAD hire our first Research Director, and hosted six Late Onset Think Tank meetings to foster collaboration and innovation in advancing research and clinical trials. The Buryk Family has made a substantial impact on the rare community and helped to drive not only research for Tay-Sachs and Sandhoff diseases, but awareness for all onset levels of Tay-Sachs and Sandhoff as well as Canavan and GM1 diseases. The family’s New York Times ad has helped at least two women in our community receive a proper diagnosis.

DETERMINATION

Adelman Associates

Tedra Cannella

Evan Ungerleider Fund/
New York Area Fund of NTSAD

Lori and Lee Greenwood

Innovative Lab Services

Sue Kahn and Dan Kirschner

Staci Kallish, DO*

Betty Katz

Jon Lawrence* and Ashlee Suran

Blyth and Charlie Lord

Mathew Forbes Romer Foundation

Myrtelle

DREAM

B Brave Foundation*

Blu Genes Foundation

JScreen

Louis Segreto 26 Foundation

Propel Careers*

Susan and Alan Roden and Family*

Tito’s Handmade Vodka

RARE

Barnett Law Office

IntraBio

Jamie Ring Advocacy Consulting*

ADVOCATE

MassBio

Carla Steckman*

*NTSAD Board