Local organizer is community fixture


The recent Fragile X Conference held at Union Station’s Hyatt Regency Hotel, July 23 – 27, in downtown St. Louis brought over 800 people to the area to learn more about Fragile X Syndrome, the most common genetic cause of cognitive impairment and autism. This international conference was organized locally by Margaret Israel.

Margaret Israel is founding president of the Fragile X Resource Center of Missouri, an organization that provides parental support and educational outreach on Fragile X Syndrome, which was the local host organization for the National Fragile X Foundation’s conference.

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“We have been around since 1992, since FMR gene was identified,” said Israel, speaking about the Fragile X Resource Center of Missouri and the gene whose mutation is associated with FXS.

But Margaret Israel’s work reaches far beyond this one conference and organization. She is very active in Jewish community life in the St. Louis area.

Besides her work on FXS, Margaret Israel is a life member of the Board of St. Louis Hillel. “She was a member so long they made her a life member,” joked her husband, Washington University scientist Martin Israel, in a recent interview for the Jewish Light.

The Israels are active also in their congregation, Brith Sholom Kneseth Israel, where Margaret is a past president.

Margaret Israel is a member of the Jewish Book Festival organizing committee as well. The Jewish Book Festival annually brings Jewish authors to the area for a weeklong series of readings, discussions, signings and other events in the fall.

A big part of her community involvement is her work in her role as a vice president of the Jewish Community Relations Council. One of the things the Jewish Community Relations Council does is to organize trips to Israel.

“I would like to suggest that if people from the St. Louis Jewish community are traveling in Israel, they would be welcome to see the kind of research that is going on in Israel,” said Israel.

Two of the scientists discussing their work at the Fragile X Conference were a pair of women from Israel, Dalit Ben-Yosef, Ph.D., and Rachel Eiges, Ph.D. Their research used embryonic stem cells from embryos diagnosed with Fragile X Syndrome to better understand the disease.

“We set up a new program to diagnose Fragile X from a single cell we biopsy from an embryo before it implants in the uterus,” said Ben-Yosef. “Couples who are carriers of genetic diseases, like FXS, come to the IVF (where) we fertilize the egg, then we can check one single cell of the embryo. So we can tell this embryo is healthy and this one is sick, so we can transfer to the uterus only the healthy embryos.”

Ben-Yosef considers this screening technique is an important advance. “To diagnose Fragile X is not so easy, because the mutation is a complex mutation,” she said. The researchers asked the Israeli ethics board to approve the use of the affected embryos for research and were the first in Israel to get approval to derive human embryonic stem cells.

“We love to have the connections with Israel here is St. Louis, where we also have interest in stem cell research,” said Israel.

The Israeli researcher said that with the Human Genome Project, in which Washington University participated, we know so much more about human genes than we once did. “Luckily in Israel, there is a lot of support,” she said.

“I want to get the word out about what wonderful people from Israel we have participating in this conference,” said Israel.

Margaret Israel is passionate about her work on FXS, a disease that affects the Israels’ son Sam.

The Fragile X Resource Center of Missouri that Israel heads provides parent support for families diagnosed with FXS. “People received the diagnoses and that is all the medical profession does,” she says. Her organization helps fill that gap between learning the diagnosis and what comes next. Israel provides her own phone number for parents to call when they receive the diagnosis.

Fragile X Resource Center of Missouri also serves as an educational and outreach group, to inform people in the St. Louis area about FXS. The Center also deals with FXS-related disorders, Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), which causes symptoms that can be confused with Alzheimer’s or Parkinson’s, and Fragile X-associated Primary Ovarian Insufficiency (FXPOI), which causes early menopause, even in women in their 20s.

The organization meets monthly but also sponsors a speaker event in the October, to which the public is invited. They also host fundraisers, including a “mouse race,” said Israel.