follow

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

Day of Hope Raffle in Honor of Grayson Kemp


Grayson was an easy and laid back early on. (Easiest all-natural delivery ever!) In a family of hikers, he never fussed when being worn by his mama on the trail, and would squeal with delight whenever there was a breeze. Around the age of six months we noticed he wasn’t progressing quite as he should. Along the route to determining his diagnosis, he had countless blood draws, testing, observations, therapies, and a multitude of opinions as to the cause. 

In June 2015, just three months after his first birthday, we received the news no parents should ever have to hear - Grayson has the terminal illness of Infantile Tay-Sachs. 

Grayson turned three in March of 2017, and we are completely aware that “the end” is slowly creeping up on us every day. We’ve had to carefully craft what we tell our six year-old, who is great at educating others about Tay-Sachs, but doesn’t yet know that it’s a terminal disease. We’ve become the experts on Tay-Sachs as it affects Grayson, informing the doctors of what we need. Just as important, we continue to be as much of the “Kemp family” we’ve always known ourselves to be, which includes hiking as a family and sharing those hikes on our blog, Family Trail Time.

We are indebted to NTSAD for all of the support we've received since Grayson's diagnosis. NTSAD put another affected mother in touch with Grayson's mom to talk through things, provides helpful literature, hosts an annual conference for affected families to come together, and fund raises for research to find a cure. For NTSAD's 2017 Day of Hope on September 16th,  we are having a live raffle in Grayson's hometown of Elk Grove, California.

Thank you to the following for such generous donations to our raffle: 

 

Raffle tickets are $5 each - or - 5 for $20 and can be purchased online.

 

Winners will be announced live on Facebook page Team Grayson Kemp at 8:00am PST. Each winner is responsible for coordination of prize pick-up from Elk Grove.

 

 

Why Day of Hope?

Why is Day of Hope important?

It is a tough time for federal funding of research in the field of lysosomal storage and leukodystrophy disorders, so researchers need support from organizations and foundations like NTSAD, Cure Tay-Sachs Foundation and Cure GM1. 

This June 18th article from UMass Medical is about one of the projects that NTSAD has been a part of since its inception over 10 years ago.

Read it here.

Team Grayson's Day of Hope

What is Tay-Sachs?

Tay-Sachs disease is caused by the absence or significantly reduced level of a vital enzyme called beta-hexosaminidase. It is the Hexosaminidase A (HEXA) gene in the DNA that provides instructions for making this enzyme. Without the correct amount of the HexA enzyme, a fatty substance or lipid called GM2 ganglioside accumulates abnormally in cells, especially in the nerve cells of the brain. This ongoing accumulation, also called "substrate", causes progressive damage to the cells.

Infantile Tay-Sachs is typically the absence of the HexA enzyme. This differs from the Juvenile and Late Onset forms of Tay-Sachs when the mutations allow the HexA enzyme to function a little bit. Just a small increase in HexA activity is enough to delay the onset and slow the progression of symptoms.

What about research?

Tay-Sachs Disease research is usually performed simultaneously with Sandhoff disease research. This is because these two diseases have a similar underlying biochemical mechanism.

Read more about the Research We Fund here.

Read past NTSAD's Research Reviews here.

Login