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

The Brooke Gettleman Memorial Fund

The Brooke Gettleman Memorial Fund was created by her brother, Alec, in order to raise money and awareness towards finding a cure for Tay-Sachs disease, as well as to support families with diagnosed children.
 
Brooke passed away at two-and-a-half years old from this awful, genetic neurological disease that ultimately destroyed her central nervous system. Alec was seven at the time and had developed a very special and meaningful relationship with his sister. The bond they shared continues to have a tremendous impact on his life. 
 
Through The Brooke Gettleman Memorial Fund, please help Alec honor Brooke's life, provide support to families with affected children, and help NTSAD find a cure. Donate
 
 

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.

Brooke Chase Gettleman

February 13, 1996 ~ December 24, 1998

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