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

General Suppport

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.

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. 

Supporting the Helping Hand Grant Fund

Helping Hand Grant Fund

How Your Invaluable Support Helps!

 The Helping Hand Grant Program provides scholarships to families-in-need to help with the expense of attending the Annual Family Conference. NTSAD does not take any administrative costs; every dollar raised goes directly to a family in need because supporting families is a top priority. Only at the NTSAD Annual Family Conference can families connect directly with other families, learn the latest in research developments and discuss health management options.

We need to raise at least $20,000 more to be able to help every family who wants to attend the conference but cannot afford the expenses. Your gift today will make a difference in the lives of families coping with the unimaginable.


Donate to the Annual Family Conference

Newly Diagnosed

My daughter was born perfectly perfect with 10 fingers and 10 toes with perfect lips and eyes and hands and feet. She completed our family instantly. She was learning just like any other baby and reaching her milestones until the age of 5 1/2 months and that is when things started to change. She was no longer able to sit up and stopped rolling over....I knew there was something wrong. She started to regress and things got worse. She never crawled or took a step, never had a first word and has since lost her vision and ability to eat orally. My daughter was diagnosed with Tay-Sachs disease on July 23rd, 2012. I thought our world and the life we knew was crashing down. I didn't know what to do or where to turn. I immediately started to do research and came across NTSAD. This has been my saving grace.


Coping with Loss

 We desperately want to attend the Annual Family Conference. With all of the funeral expense and saving money for the headstone we could really use all the help we can get to attend. We need help with travel and hotel. I was looking into our finances to see what we could budget for the conference. Realistically I know that the trip will not be possible for us on our income. With passing of our daughter and the birth of our son, and the resulting missed work and funeral expenses, our savings are drained. Even our tax return will not even be enough to cover a proper head stone for our daughter.

Living with Late Onset Tay-Sachs (LOTS)

My son has Late Onset Tay-Sachs and is not doing well at all. He has been ill and is simply fading away. For people who have not seen him in some time, it is shocking. We are trying to deal with it as best we can, but it is very difficult. The Annual Family Conference gives us the strength and resources to face the difficult year ahead.


Providing Advanced Care

We attended our first NTSAD Annual Family Conference just 2 weeks after our daughter’s diagnosis. The disease has really taken a toll our sweet daughter's body. The conference is a chance for us to spend a weekend with other families like ours. It is a weekend of learning, laughing, crying, and just feeling normal.


Living with Canavan

We have never attended a conference and would love to meet other families for support and friendship. We hope to get some valuable information from the researchers, clinical experts and other families. We plan to use our tax return for travel but will not have enough to cover the other expenses. We think attending the conference would be a very valuable experience for our family and hope that we can receive a grant to be able to attend.







Thank you to our sponsors!

This wonderful conference is only possible because of the kind generosity of our supporters. We are truly grateful to all the families, donors, chapters, organizations and companies that give to the Annual Family Conference. We give special recognition to the donors above that have contributed $250 or more.

Amicus Therapeutics


Wendy and Chris Baker

The Ben Baker Fund of NTSAD

In loving of memory of their son, Benjamin

and in loving honor of their children, Caroline and Jacob

Benton’s Family Assistance Fund

In loving memory of Benton

Bonnie and Barry Davis

In loving memory of their son, Adam

Centric Health Resources


Delaware Valley Chapter of NTSAD

In loving honor of all the children

Genzyme, a Sanofi Company

Monica and Gary Gettleman

In loving memory of their daughter, Brooke

Sharon and Steve Hoffman

Harry Hoo Fund of NTSAD–NY

In loving memory of their son, Harry

The Porter Family and The Jones Family

The Emily Lynn Jones Memorial Fund of NTSAD

In loving memory of their granddaughter and daughter Emily

Kaleb’s Cure

In loving memory of Kaleb Ogden

Susan and Thomas Keyes

In loving honor of all the families

Cameron and Hayden Lord Foundation, Affiliate of NTSAD

In loving memory of Cameron and Hayden

Friends and Family of Ronan Louis

Our Little Seal forever in our hearts

Shelia and Allen Mushin

In loving honor of their granddaughter, Alyssa

Happy 19th Birthday Alyssa!

The Ratner Family

In loving memory of Ilana Ratner

Mathew Forbes Romer Foundation, Affiliate of NTSAD

In loving memory of Mathew

Laura and Simeon Schindelman

In loving honor of all the families

Cynthia Schwartz

NTSAD * Love * Event

In loving honor of Emily Rapp and her little seal Ronan

Arlene and Arthur Segall

In loving honor of their son, Eric Suarez

Tikun Olam Program of United Synagogue Youth

Cynthia Tifft, MD, PhD and Forrest Hall, PhD

In loving honor of all the families

Lisa and Ron Wells

Eagle for Emily

In loving memory of their daughter, Emily

Canadian Association for Tay-Sachs & Allied Diseases (CATSAD)

Wiz Fund

In loving memory of Elizabeth ‘Wiz’ Gagne

New York Area Chapter of NTSAD

In honor of all the children & in loving memory of Stan Michelman

Shari and Jeff Ungerleider

Evan Lee Ungerleider Fund of NTSAD–NY

In loving memory of their son, Evan

Research Update Session

The Research Update Small Group Discussions gave families the opportunity to speak directly with leading scientists searching for a cure, including Tay-Sachs Gene Therapy Consortium researcher Miguel Sena-Esteves, PhD. Everyone was eager to learn when a gene therapy clinical trial might begin and what funding is needed. NTSAD's commitment to finding a cure has not wavered and will continue to partner with the Cure Tay-Sachs Foundation to fund this important research that is a top priority for all of us.

Additionally, we continue our support of other potential therapies. During the session we also heard from Brett Crawford, PhD on substrate inhibitors and the importance of looking broadly at Tay-Sachs and related diseases to more quickly find a cure; Brandon Wustman, PhD on the possible connections between Alzheimer's Disease and Tay-Sachs; and Evan Snyder, MD, PhD on stem cells.

We have an incredible Scientific Advisory Board and know that we are working with the best researchers in the field, who are asking the right questions and designing innovative methodologies to answer them.

We are incredibly proud of the investments we are making across the board and we are so very grateful for all of your support that helps make this research possible. Hope IS on the horizon.

Being in San Diego under the blue skies and warm sunshine I had to be dragged to the Research Session by Carol Zimmerman and held there by Rose Urban, as I really wanted to get some Vitamin D.  However, once it began I was really glad I stayed.  Gone are the long, boring, PowerPoint days of presentations and I found myself interested and engaged with the presenters.  I learned a lot, and found myself grateful that there are so many dedicating their lives to finding a cure. ~ Emily’s mom Karla Jones

Even though I know that results will probably never help my child, I am so grateful that all of these people are trying to find cures & preventions for these horrific diseases. ~ Overhead during the session

The research session was fantastic! It was held in an informal environment where interaction with the professionals in the medical area was easy, and very informative! I learned a lot about Tay-Sachs and got a glimpse as to where the research in this area is heading! ~ Cary Berman, LOTS

Living with LOTS

Though the number of families coping with Late Onset Tay-Sachs (LOTS) at the Annual Family Conference was few in numbers their spirit and courage is beyond measure.  Cary Berman, Eric Pastor and his dad Mark attended the conference for the first time! And we welcomed back Eric Koval’s mom Ruth Ann, Julie Stein and Don Greenblatt’s beloved friend and partner Sherri Moyer. Our small but mighty group attended the general sessions with all attendees as well as sessions specific to their unique needs and challenges that included Q & A with clinical expert Dr. Susan Perlman, Coping with Isolation and Finding Support, How Current Research Relates to LOTS and Promote Independence through Exercise. After two days filled with informative and empowering sessions, families coping with all forms of the disease, speakers, volunteers and Board Members joined the LOTS families to light a candle; raise a glass of Bailey’s and share stories and memories of friends lost to LOTS.

Cary BermanMy name is Cary Berman and I have Late Onset Tay-Sachs or (LOTS). When diagnosed by accident with LOTS  I was 1 of 250 in the world.

Recently, I attended my first NTSAD conference in San Diego! It was exciting to make friends with others who have an interest in this devastating disease. I have found that LOTS can be very isolating, and it was great to be among such caring, friendly individuals. It was also very refreshing for me to learn from experts more information about this medical challenge that, unfortunately, many doctors do not know.

Wishing all my new friends only the best, and looking forward to seeing you in Atlanta!


Meet the Families

These personal stories were written by families having a child diagnosed with an allied disease. 

Contact us if you would like to submit a story.