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Leading the Fight Against Tay-Sachs

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Susan Kahn

Susan Kahn is the executive director of National Tay-Sachs and Allied Diseases (NTSAD), an organization that supports adults and children and their families with this terminal, yet widely unheard of, genetic disease. There are many myths surrounding Tay-Sachs, including it no longer exists, or it only affects those of Jewish descent, neither of which is true.

Susan is an advocate of genetic testing, no matter what your nationality happens to be. Recessive diseases happen to people from all walks of life, so she wants anyone planning to start a family to see a genetic counselor before pregnancy.

Through the organization and their presence on social media, she has been able to create a strong and supportive network of people who have, or who are currently dealing with Tay-Sachs and other related diseases.

Susan has proven that there’s power in numbers. She has facilitated the gathering of people who reach out to each other, helping each other get through a terrible disease that, although rare, affects far too many people, especially infants.

Hope comes in the form of her hard work and the annual Day of Hope, too, which happens the weekend of September 19th and 20th of this year.

Her mission: to promote awareness and to encourage genetic counseling to reduce the incidence of Tay-Sachs and other related diseases. But above and beyond that goal, she wants children, adults and families affected by these diseases to work together and offer hope and support to each other.

Hopefully, treatments, and even a cure is down the road, but for now, Susan is there to offer help, love and support to anyone affected by this challenging disease. Her work is making a difference in many people’s lives.

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