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

Embree Alexander Fund

Embree Alexander

The Embree Alexander Fund was established by Kyle and Caitrin Alexander in memory of their daughter, Embree, who passed away from infantile Sandhoff disease in 2018. Read about this beautiful little girl below.

This Fund contributes toward research and support for families.

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Donations by Mail or Phone:
(617) 277-4463
Checks payable to NTSAD
2001 Beacon Street, Suite 204
Boston, MA 02135

To set up annual recurring donations, please contact us at (617) 277-4463.

Embree Ray Alexander
June 11, 2017 - September 17, 2018


Embree with parents Kyle and Caitrin Alexander Even though Embree’s life on this earth was far too short, she continues to leave a lasting impression on the hearts of many. A beautiful little girl that brought so much joy and light to our lives, she lived a sinless life and knew nothing but pure love. Some of her favorite things included being sung to while cuddled up with her parents and of course, getting playful doggy-kisses from her pet lab, Kinzie. We have fond memories of her sweet smile and how she would often get the cutest little hiccups when something made her giggle too hard.

At 11 months old, Embree was diagnosed with infantile Sandhoff disease. She was only able to sit up with support for about a month before this terrible disease began to run its course. Because of progressive muscle weakness and atrophy, she lost all trunk support. As the disease progressed, Embree also lost her vision, her ability to swallow, and began having seizures.

Embree gained her angel wings on September 17, 2018. She was only 15 months old. We want everyone to know our daughter’s story and how she continues to influence our lives for the better. NTSAD (National Tay-Sachs and Allied Diseases) has been a wonderful support system for our family since our daughter’s diagnosis. Clinical trials for these diseases are underway and we want to see a cure! We want Embree’s legacy to live on.


Help us honor her memory by learning about Sandhoff and the other allied diseases. Helping spread awareness is so crucial to hopefully bringing an end to such heartbreaking losses. Doctors and scientists are on their way to some amazing breakthroughs, but not without our help. Please consider making a donation to NTSAD, a non-profit organization, in memory of our sweet girl.

With love and appreciation,

Kyle and Caitrin Alexander



What is Sandhoff?

Sandhoff is a lysosomal storage disorder. It is caused by a mutation in the gene responsible for the vital enzymes called beta hexaminidase A and B. The role of these enzymes is to degrade a fatty substance or lipid called GM2 ganglioside. In the absence of the enzymes, GM-2 accumulates abnormally in cells, especially in the nerve cells, or neurons, of the brain. This ongoing accumulation, or "storage", of GM2 causes progressive damage and eventually death of the cells.

What about research?

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

Read more about Sandhoff Research here.