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

Helping Hand Grant Fund FAQs

Helping Hand Grants FAQ

We have received a grant in the past, can we apply again?
Yes, but award priority is given to families who received their diagnosis or have a loved one who had passed since the last in person Annual Family Conference in 2019. 

Our family needs a grant for all our expenses, including travel, is that possible?
Unfortunately, in most cases NTSAD is not able to cover travel expenses. If you have extenuating circumstances that you would like the grant committee to take into consideration, please list them in the final question of the form.

We live outside the US; are we eligible for a Helping Hand Grant?
Yes! But again, we are not able to cover travel expenses so you would need to be able to make your way to the US, and we can help from there.  

Do I need to pay for my affected child?
No. We never charge for affected children.  All other family attendee’s fees are as follows:  
Ages 0-4             FREE!
Ages 5-12           $100
Ages 13 and up   $200

Are there limits to how much I can ask for?
While we ask all families to make every effort possible to seek out conference funding before applying for a Helping Hand Grant, we must also limit the amount we grant to each family to ensure we can help as many families as possible. Therefore, we ask you to please only request funds that are absolutely necessary for attendance.

What is the application funding limits?
While there are no limits, per se, there are general guidelines the Family Services Committee uses when determining how much to award:

Newly diagnosed families and individuals attending for their first time, and newly bereaved families attending for their first time will be given priority status for grant considerations up to the amounts as follows:
$1500 Family/$1000 Individual for registration and hotel.

How/when will I know if I was awarded a grant?
We will notify you of your grant award status after the grant approval process is complete. Grants will be awarded on a rolling basis as they are received and we will aim to notify awardees within two weeks of the date of submission of their application. All grantees will be notified no later than Monday, June 15, 2022.

What do I need to do if I am approved?
You will receive an award letter and contract of attendance to accept, sign and return to NTSAD no later than June 16, 2022.  At that time, any additional fees owed for registration will be due to NTSAD. You must make your own hotel reservation, for standard rooms only within the NTSAD room block with your own credit card (to leave on file with the hotel for incidentals). The hotel will then notify NTSAD of your reservation. You will not be charged for the approved hotel room nights, but you are responsible for any additional charges made to your room.

Conference Features

  • 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


    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
  • 1

Reasons to Go

“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.”