Prioritize your health with Jscreen

ATLANTA, GA / ACCESSWIRE / September 9, 2024 / Shari Ungerleider and Myra Sack have one thing in common: they have both lost a child to Tay-Sachs disease. For Shari, it has been 25 years since she lost her beloved son Evan, while Myra lost her beautiful daughter Havi in ​​2021. It's hard to believe that after all these years, babies are still being born with Tay-Sachs and other devastating genetic diseases. The challenge is to ensure that future families do not have to suffer. The solution is simple: accurate, comprehensive genetic screening and personalized genetic counseling for future parents.

Both Myra and Shari are vocal advocates for genetic screening and ensuring appropriate testing. To achieve their goals, they have partnered with Jscreen, a national nonprofit health initiative dedicated to preventing Jewish and other genetic diseases and educating the community about the importance of pre-conception genetic testing. This September (Tay Sachs Awareness Month and Rosh Hashanah), Jscreen will raise awareness about genetic screening so every family can plan for a happy new year and a healthy future.

Myra recently published a book about her story – FIFTY-SEVEN FRIDAYS: Losing Our Daughter, Finding Our Way – a memoir of Havi's short life and her parents' poignant and tragic journey to help their daughter live and die. In revealing the beauty and abundance that can be discovered when learning to live with grief, Myra Sack offers the reader nothing less than “an act of grace.”

In the years since Havi's death, Myra and her husband, Dr. Matt Goldstein, have found meaning in her pain. Myra is now certified in Compassionate Bereavement Care and sits on the board of the Courageous Parents Network. She also founded e-motion, inc., a nonprofit organization she conceived that combines grief science, spirituality and sports to help people who have lost a loved one find a new way to live with grief and loss. Matt is now CEO of Jscreen, an organization focused on high-quality, preventative genetic care and testing.

Myra says, “Losing Havi changed everything for our family. It's impossible to walk through the world unchanged after losing a child. And so, as part of our transformation, we are dedicated to serving the world with grace, compassion, and courage – the essence of Havi. If we can help support other families, that is a tragic gift that allows us to continue raising Havi. I believe deeply in the power of community to cushion suffering and keep us whole. Jscreen is a community with compassionate leadership, cutting-edge science, and most importantly, the power to save lives. It's a community that every couple considering having children should lean on.”

The story continues

Shari says, “Not a day goes by that I don't think about and miss Evan. I often wonder what our family would be like if he were still alive. I wanted to find a way to honor Evan and keep his memory alive. I decided to turn our tragedy into something positive so that other families would be spared the suffering we experienced by raising awareness about the importance of genetic testing. The purpose of a carrier screening test, coupled with genetic counseling, is to identify carrier couples, preferably before pregnancy, and help them understand the effects of the disease on an affected child and know the reproductive options available so they can plan for the health of their future children.”

Jscreen makes genetic testing simple, accessible and affordable by offering easy-to-use at-home saliva test kits. The Jscreen Reproductive Carrier Screen gives expectant parents a comprehensive look at their risk of having a child with a genetic disease. Designed for people between the ages of 18 and 45, it tests for over 200 genetic diseases, including Tay-Sachs and other diseases common in the Jewish population, as well as diseases common in other groups. When a carrier couple is identified, Jscreen offers them telegenic counseling to discuss their results and the family planning options available.

What is Tay-Sachs disease?

Tay-Sachs syndrome is a rare, inherited genetic disorder that primarily affects infants and young children. There is also a late-onset form of the disease. Tay-Sachs is caused by the lack of the enzyme HexA, which causes an excessive buildup of certain lipids in the brain and nerve cells, resulting in progressive neurological damage. Babies born with Tay-Sachs syndrome usually develop normally for the first few months, but as the disease progresses, they begin to regress. The children become blind and deaf, suffer from seizures, and have breathing problems. Children with Tay-Sachs syndrome often die before the age of five.

There is no cure for Tay-Sachs disease, but genetic testing and counseling allow people to determine if they are at increased risk of having a child with the disease. One in 30 Ashkenazi (Eastern European) Jews is a carrier of Tay-Sachs disease, and one in 300 people in the general population is a carrier. If both parents are carriers, each pregnancy has a 25% chance that the child will have the disease. For the small percentage of couples at risk, there are many options, such as in vitro fertilization with preimplantation genetic diagnosis, to help them have healthy children.

In 2008, the U.S. Senate unanimously voted to declare September as National Tay-Sachs Awareness Month to raise awareness of this deadly disease.

“A simple at-home saliva test can really help families avoid heartbreak. Jscreen is here every step of the way to provide information about Tay-Sachs syndrome and other conditions and to help expectant parents make decisions about the future of their families,” explains Karen Arnovitz Grinzaid, CEO of Jscreen.

For more information and to test it, visit jscreen.org.

Contact information

Stacey Bender
PR Officer
[email protected]
9736501218

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SOURCE: Jscreen

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