follow

Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

  • 1
  • 1
  • 2

A Family Gathering

The NTSAD Annual Family Conference is the cornerstone of our exceptional Family Support Services. It provides over 200 parents, grandparents,affected children, healthy siblings, affected adults and their families the unique opportunity to: gather with people that truly understand; learn about latest research and symptom management approaches; and discuss other important topics.

Conference Goals

The primary goals of the conference are to empower, support and connect families coping with Tay-Sachs, Canavan, GM-1 or Sandhoff. These diseases are always fatal in children and extremely debilitating in adults. The Annual Family Conference directly achieves our mission to support affected families and individuals in leading fuller lives.

Helping Hands Programs

Another important goal of the conference is to ensure every family is able to attend the conference especially those who cannot afford it. This is achieved through the Helping Hand Grant Program. Each year approximately $40K is raised through donations and grants. Every dollar raised is awarded directly to families in-need to help cover the expense of attending. Scholarships range in size from covering one night at the 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.

More Benefits

Other examples of the powerful impact of the conference include parents donating equipment their child no longer needs to other families, the strong bonds and friendships formed over just a few days, and incredible sense of hope and empowerment that comes from attending the conference.

One attendee shared this beautiful sentiment after attending her first conference:

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.

 

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.

 

 

Make a Gift to the Helping Hand Fund here and see below to read about who benefits from your generosity!

 

 

Donate Today

 

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.

 

 

 

 

 

 

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


Anonymous


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


Counsyl


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

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

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!

Subcategories

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.

Sign up for news

 

Enter your email to receive NTSAD's Topic of the Week or quarterly news.


 

Enter your email to receive NTSAD's Topic of the Week or quarterly news.


Login