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

Thank You!

Thank you to everyone having or have had 2019 Day of Hope Events! (as of August 30, 2019)

The Alexander Family & Friends
Celebrating Embree Giving Page

Ashley Bayer
Jase's Ride of Hope on 9/14

Becky Benson, Family & Friends
Questions for a Cause Trivia Night on 10/14

Karin Croft
Mahjongg Tournament & Silent Auction on 9/14

Ruth Feldman
Walk/Bike in Maine

Kelsey French
Kaydence’s T-Shirt Campaign

Barry & Sarah Gamzon
T-Shirt Campaign

The Gropp Family & Friends
Beanbag Tournament - Thank you for another fantastic year!

The Jackson Family & Friends
Jessie's Ride of Hope on 9/14

Liz Siciliano
Brooke’s T-Shirt Campaign




Carla Steckman
One Foot in Front of the Other
T-shirt campaign

The Stidham Family & Friends
Eli's Cruise for a Cure on 9/21

The Urban Family & Friends
Bloops for Brooke Tournament
Thank you for another amazing year!

Beth VanSkoyck
T-Shirt Campaign for Brooke

The Kemp Family & Friends
Dos Coyotes Border Cafe “Dine and Donate” on 9/9

Phil Rhodes
Fishing Charter Raffle

The Ronaldson Family & Friends
Seven Days of Hope up to 9/21

The Wivell Family & Friends
Legacy for Lacie 17th Annual Walk




2019 Ninth Annual Day of Hope

What is a Day of Hope?
It is a time for our rare and mighty community to come together to make a difference and show that there is always hope.

All proceeds go to the research that NTSAD funds including the work leading to clinical trials. We are closer than ever and together we can be sure to be ready!

Our goal for 2019?

To surpass $500,000! We can do it! Our total since 2011 is now $439,000. If you're interested in participating, please take a moment and email Becky This email address is being protected from spambots. You need JavaScript enabled to view it.. Thanks! 

Now, how can you be part of a Day of Hope?

There are many ways!

  • Create your own custom Day of Hope t-shirt campaign with our friends at CustomInk. (Email This email address is being protected from spambots. You need JavaScript enabled to view it. to sign up for your own campaign!)
  • Spread awareness about being the risks of being a carrier.
  • Share your family story and how being rare has impacted your family.
  • Host a lemonade stand in your neighborhood.
  • Create your own giving page and encourage friends to make it go viral for what is important to you.
  • Check out some of the ideas (in the box to the right), or come up with an idea of your own, and let us know and we'll be sure to send you some fun swag!
  • Whatever you do, be sure to post and tag your photos on Facebook, Twitter or Instagram with #NTSAD #MoveMountains #2019DayofHope.

Let's Rally & Raise Funds for Research!

Let's Make Treatments and a Cure Happen. Now!

Since 2011...

Need Ideas?

Click HERE for inspiration to be a #rareGENEius and be part of the Day of Hope!

Together. We are strong.

We will make a difference!

We are making a difference!