Big Things are Happening in September

✶ It is the 67th anniversary of NTSAD’s official founding!

✶ September is also Tay-Sachs and LeukodystrophyA group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. Myelin is commonly referred to as the brain's "white matter", myelin covers nerve cells and ensures the clear transmission of nerve impulses from one part of the body to another. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient. The word leukodystrophy comes from the Greek words leuko (meaning white), trophy (meaning growth), and dys (meaning ill). If you put these words together, the word leukodystrophy describes a set of diseases that affect the growth or maintenance of the white matter (myelin). More month – an opportunity to raise awareness about these diseases.

✶ NTSAD launches a new series of papers about “Understanding Therapeutic Approaches” for Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff.

✶ NTSAD’s Day of Hope turns 14 years old! Families have raised nearly $750,000 since our first Day of Hope!

✶ NTSAD’s Fourth Regional Family Meetup will take place on September 21 and 22, in Short Hills, New Jersey, bringing local families together for connection and support.

✶ September is the month to a Move a Mile for Hope to raise funds for research for Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff!

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