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

For Danny

Danny Kenny
December 31, 2012 - May 16, 2015

Danny Ambrose Kenny was born December 31, 2012 in North Wales, PA. He was the sweetest baby and his smile was captivating.

After many doctor visits and months of questions, Danny was finally diagnosed with Classic Infantile Tay-Sachs.

We promised to make every day of Danny’s life as amazing as we could.

We would take him to Sesame Place, parks, the zoo, pumpkin patches, the beach, and many other places we enjoyed. We wanted him to experience as much as he could. He loved music, massages, various flavors of chap stick, and listening to his brother comfort him. Danny’s message was and remains to this day – Love. Love is all he knew. He taught us more about life and love then we could ever imagine. He taught us to live in the moment, and not to take anything for granted. Danny surrounded us with love. Whether it was family, friends, or people he never met, Danny somehow touched and made everyone better. He was and still is an inspiration.

In his memory, we often display random acts of kindness to continue this legacy of love. Danny truly made a difference in this world, and continues to do so. Anyone who was ever lucky enough to hold him in their arms, to embrace him, will tell you that to do so was the most enjoyable and most amazing feeling in the world. Love would radiate from him. An immediate feeling of peace would overcome them. We hope and believe that one day there will be a cure. Please feel the love, and honor Danny’s memory today by contributing to our fund.  

Your contribution in Danny’s memory will help fund NTSAD's Family Support and will directly benefit new families who are faced with a Tay-Sachs, Sandhoff, GM1 or Canavan diagnosis. WE BELIEVE that helping others when they need it the most is one of the greatest acts of kindness one can perform. 

Your contribution will forever help to keep Danny’s legacy of love alive and we are forever grateful to you for this.  

Gifts in honor of Danny will benefit NTSAD's Family Support Services.

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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.

Support Resources

New Family Packet
Request it today by completing our online request form: Contact Us

Benton's Family Assistance Fund
Learn more here about how this fund helps families.

Care Plan Template
Download   documenthere(315 KB) .

Courageous Parents Network (CPN)
www.courageousparentsnetwork.org

Emma's Fund for Families
Learn more here about how this fund helps families create memories.

Rare Siblings Project
www.raresiblingsproject.org

The Quinn Madeline Foundation
Awareness for hope. Memories for life.
www.quinnmadeleine.org

The B Brave Foundation
www.bbravefoundation.org

Learn more here.

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