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

Ride Along with Rex

Rex Lairdsen Franzen

October 10, 2014 - October 22, 2016 

Rex's life would seem too short to many, but those who were touched by him understood that the quality of his existence far exceed the quantity of his time on earth. His gentle smile could melt the hearts of those around him and his giggle could make anyone laugh out loud with him. Although he never spoke a word, his voice and thoughts could always be heard. He possessed amazing strength even though his little body was made weak by Sandhoff Disease.

With his courage, he led us to believe that each day is a blessing and an opportunity to create lasting memories. He could spend hours rocking in his favorite chair while cuddling close to those he loved so much. He enjoyed music, the wind in his hair and the rustling of leaves in the trees. He loved to be massaged with coconut oil and the sound of his Daddy's voice. He loved to be surrounded by his brothers playing and to be snuggled close to his mamma while nursing.

Rex lived and died without sin and truly wanted nothing more in his short life than to be loved and caressed. With his passing, we want to remind others that his life is one to be celebrated and remembered. Please help us honor his memory by learning more about his fatal genetic disease, Sandhoff, and spreading awareness in your communities. Donating to the National Tay-Sachs & Allied Diseases Association, a not-for-profit organization, will help fund research so that no other family has to know the pain of losing their child to these genetic diseases.

With grateful hearts,

Craig, Amber, Erick, Seth, Piper and Gus Franzen

P.S. If you have performed a random act of kindness in memory of Rex, please share your kindness moment on his Facebook Page - Ride Along with Rex - by clicking on this link.

 

 

 

 

 

 

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 GM-2 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 GM-2 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 the Research We Fund here.

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Donate by Mail

Checks payable to "NTSAD" may be mailed to:

NTSAD
c/o Ride Along with Rex
2001 Beacon St, Suite 204
Boston MA 02135

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