Tay-Sachs Christmas Trains
Welcome to our Tay-Sachs Christmas trains! We hope you enjoy them and that you and your family have a wonderful Christmas. This holiday season, we would like to bring awareness to Tay-Sachs, a fatal condition that affects our 18-month-old son. If you enjoy the show, please consider donating today!
Tay-Sachs Christmas Train Schedule for 2013
Dates: Trains will run every Saturday and Sunday before Christmas (December 7th-8th, 14th-15th, and 21st-22nd).
Hours: 9am to 5pm
Help spread the word - invite your friends!
What is Tay-Sachs?
Tay-Sachs is a genetic condition that is fatal in early childhood. Infants affected by Tay-Sachs lack an enzyme that under normal circumstances would break down a toxic chemical produced in the brain. As the chemical accumulates, it causes damage to the nerve cells of the brain and causes progressive deterioration. Symptoms typically appear around six months of age and the disease often results in death around age four. There is no treatment and no cure, but Tay-Sachs is preventable with the right testing.
Learn How You Can Be Tested
With 1 out of every 250 Americans being a carrier, it makes sense to get tested. Anyone can be a carrier of Tay-Sachs. Proper blood enzyme testing is necessary to determine if you are a carrier. Ask your primary doctor or OBGYN for testing, contact www.nsgc.org for a genetic counselor near you, or visit www.tay-sachs.org to see if you qualify for free testing. Please note that doctors and genetic counselors often say that only certain groups who are high-risk (i.e., have a rate of 1 out of 30) should be tested, but everyone is at risk and entitled to know their carrier status even if your risk is "only" 1 out of 250. It is important to have what is called the blood enzyme test to measure the amount of enzyme in your blood in combination with DNA testing. The blood enzyme level cannot be measured from your saliva.
What Does TSAPO Do?
Tay-Sachs Awareness and Prevention Organization's (TSAPO) primary mission is to prevent Tay-Sachs in the general population. TSAPO accomplishes this mission by helping families affected by Tay-Sachs build a healthy family of their own through grants for assisted reproductive technology and adoption. We also employ targeted genealogical research to identify individuals who might be at higher risk of carrying a Tay-Sachs mutation so they can be tested and know their status.