06 March 2016

Two Fascinating Stories: Her First Name is "Genius" and a Former Soviet Jew Becomes the Famous Savior of Children

Two Fascinating Stories of Aliya Immigrants Who Became Lifesavers
(the articles are condensed to save space, but links are provided)

"Her First Name is Genius"
And a genius she must be as the 23rd Generation from the Baal Shem Tov

“My father was a chemical engineer and a Hebrew teacher, so he and my mother chose it to remember my grandmother Golda. My maternal grandfather was the chief rabbi of Romania for many years. As an only daughter, I brought an end to 23 generations of sons who descended from the Ba’al Shem- Tov (Rabbi Yisrael ben Eliezer, the 18th-century founder of Hassidic Judaism).” Many members of the family were murdered by the Nazis in the Holocaust.

Prof. Gheona Altarescu, a physician and geneticist who was born in Romania and made aliya at the age of 24 after completing medical school, is somewhat embarrassed when asked about her first name, which means “genius.” How do parents know that their newborn baby, an only child in Gheona’s case, is going to be a genius? She laughs. After receiving her MD, she went to the US National Institutes of Health to study genetics. She was accepted by Shaare Zedek’s internal medicine department but wanted a field that combined gynecology, obstetrics and genetics, so her current specialty was perfect for her.

“We are the largest PGD unit in Israel and one of the largest in Europe,” said Altarescu.

“We have eight technicians and two staffers with MDs and PhDs. I am the genetics adviser, and Prof. Ephrat Levy-Lahad is director of the department.”

“We provide PGD services for Sheba, Tel Aviv Sourasky, Rabin-Beilinson Campus, Soroka, Assaf Harofe and Wolfson Medical Centers and also the private Herzliya Medical Center.

“As many of the diseases are very rare, I refer patients with some of them to other medical centers here. Hadassah University Medical Center in Jerusalem and Rambam Medical Center in Haifa, for example, have a lot of experience with metabolic diseases such as Pompe disease. We also have ongoing contacts with colleagues abroad who have special expertise in specific rare diseases,” said the geneticist.

If she could have a meeting with Litzman, she would suggest to him the passage of a law, modeled after that in the US, to encourage the development of orphan drugs.

“I asked the Health Ministry’s chief scientist’s office for a grant for Fabry research, but I was turned down. The office has very little money, a few millions of shekels, at its disposal. This small country has four or five centers specializing in PGD while there are three or four in all of England, but we need more manpower, as we see an exponential increase in the number of women who turn to us to have a healthy baby.”

This very interesting article appeared in the Sunday Jerusalem Post March 6 ed. entitled, "Finding Parents for Orphan Diseases", and about the Rare Diseases Day February 29. She is surely a remarkable woman.


Dr. Polina Stepensky

In a Northern Russian Republic called Chuvash, one of every 4,000 newborns is reportedly born with osteopetrosis, a rare and fatal genetic bone disease that afflicts children. Petrosis: think petrified forests. there are two types of bone cells: osteoblasts and osteoclasts. Osteoblasts build bone. Osteoclasts (like iconoclasts) tear down the structure. Working together, the two processes make our bones porous [...] But when osteoclasts don’t do their job, our bones turn solid, like stone. Actually like marble. Osteopetrosis is also called “marble bone disease.”

Dr Polina Stepensky was born in Ukraine. Her native land was part of the former Soviet Union, and Jews were prohibited from practicing Judaism. The Iron Curtain made it nearly impossible for citizens to seek freedom, let alone explore opportunities abroad. But by the time Stepensky was born in 1968, resistance to these restrictive policies was growing, catalyzed by the Six Day War that had bolstered Jewish pride.

Molina Stepensky made aliya in 1990:  10,000 Jews were arriving each month in Israel, bringing with them determination and ingenuity that could only flourish in freedom.

Her medical studies were interrupted by the Zionist decision to come to Israel. A new immigrant, she was advised that it would be more practical for her to qualify as a nurse, so she went to nursing school in Haifa. [She became] Israeli enough to realize that she didn’t have to abandon her original dream, and went on to medical school at the Hebrew University Hadassah Medical School. She became a hematologist. Later, she went for special training at the University of Minnesota, a renowned center for bone-marrow transplantation. The first non-twin bone marrow transplantation in the world took place there back in 1968, the year she was born.

When she returned to Hadassah, Dr. Stepensky became an expert in bone marrow transplantation, focusing on non-cancerous diseases that benefit from transplantation, including various immunological diseases and osteopetrosis, which afflicts children in certain villages near Hebron whose parents are cousins. These are successfully treated with bone-marrow transplants.

Back in the Ukraine, feisty Svetlana Izozsimova, learned her grandson Kirill was diagnosed with osteopetrosis. “The doctors at home were able to diagnose the disease when he was a toddler” [...] there was no treatment. They told us Kirill would die, regretfully a terrible death.” First he would go blind, and then maybe deaf. His head would grow misshapen. She found a story that a child in the Ukraine with the disease had been cured in Jerusalem [...] in 2012 she wrote a letter in Russian to Hadassah about Kirill. To her surprise, she received a letter in Russian inviting her to come to Jerusalem as soon as possible, from Dr Stefansky.

Now for the "Happy Ending" to this story.

A bone-marrow match was found from the international bank. [...] His head returned to a normal shape and Kirill began to grow and thrive. His prognosis is excellent. A rush of parents in Russia now wanted to bring their children to Jerusalem. [Maybe this is another reason that Putin has a soft spot for the Israeli Jews.]

[A] former Soviet Jew becomes the famous savior of children from a farflung corner of Russia. Citizens of a country 1,000 times bigger than our little Israel come here for their cure.

This article, "Osteopetrosis and our little Israel" was in the weekend ed. of the Jerusalem Post.

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