Hi Family and Friends,
I recently learned that I am affected with Late Onset Tay-Sachs.
I was nervous to share my story because I didn’t want people to look at me differently. However, it’s more important to help raise awareness and be an advocate for this rare disease. It’s crucial to me to speak for others who feel they haven’t been heard, as they are impacted by something beyond their control.
I realize that this disease is a part of me, but it doesn’t define me.
Learn more about my personal story featured in Women’s Health Magazine here.
The Heringer Family Fund for Research has been raising awareness and funds in search of effective treatments and a cure for Tay-Sachs disease by supporting cutting-edge research to help eradicate rare, genetic diseases.
Tay-Sachs is a rare, genetic disorder caused by the absence of beta-hexosaminidase (HexA) causing various neurological symptoms, impacting speech and mobility. There are three forms of Tay-Sachs: Infantile, Juvenile, and Late Onset Tay-Sachs. It’s most commonly seen in infants and older children, who experience the most severe forms and usually do not live past childhood. I have a progressive form that affects me slowly over time, but thankfully is not fatal.
Read more about Tay-Sachs here.
Currently, there are several promising research projects underway in the lab seeking effective treatments and the potential cure that desperately require funding. Time is of the essence to stop the progression of the disease, particularly in individuals presently affected with Late Onset Tay Sachs. Funding research right now can potentially change the quality of life for those affected with all forms of the disease and may be applicable to many other allied diseases, such as Parkinson’s and Alzheimer's disease.
Your support makes a huge difference in the lives of countless individuals.
We are grateful to the ongoing generosity of our family and friends, which means so much more to us than words can express.
Please Donate Today
Donations by Mail or Phone:
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.
With your help, Tay-Sachs researchers can put in motion clinical trials for treatment and cure.