December 12, 2018

Genetic Testing Could Be Life-Saving for Ashkenazi Jews

When Cedars-Sinai Medical Center OB-GYN oncologist Dr. Beth Karlan was a student at Harvard University in the early 1980s, she was doing her rounds and presenting the case of a Jewish woman in her 30s who had ovarian cancer. The woman suddenly sat up and pointed a finger at Karlan and said, “What right do you have to stand there and pursue your dreams to become a doctor and I’m going to sit here and die?”

It was one of those seminal moments that helped lead Karlan down the path to a career in OB-GYN oncology. “I went into [the field] almost as a challenge because of that young woman,” Karlan said. “It’s the Yom Kippur question of who shall live and who shall die, and it really challenged me. ‘Why did she have this ovarian cancer and I didn’t?’ ”

Today, as director of the Cedars-Sinai Women’s Cancer Program at the Samuel Oschin Comprehensive Cancer Institute, and after decades of research, Karlan has just launched the BRCA Founder Outreach Study (BFOR), which is offering BRCA genetic testing at no cost to 4,000 eligible men and women, ages 25 and older, of Ashkenazi (Eastern European) Jewish ancestry.

The pilot study is being launched in New York, Boston, Philadelphia and Los Angeles, and each city is looking to sign up 1,000 participants. According to research, Jews of Ashkenazi descent are 10 times more likely to carry the BRCA1 and BRCA2 inherited gene mutations than the rest of the population, which can lead to breast, ovarian and other cancers.

Photo courtesy of Dr. Beth Karlan.

“Knowledge is power. [BFOR testing for Ashkenazi Jews] could save your life.” — Dr. Beth Karlan

As Karlan progressed in her career, she began to recognize family clusterings in OB-GYN oncology. “I would see these clusterings of sisters whose moms had died,” she said.

Karlan also treated Gilda Radner, who died of ovarian cancer in 1989, and she launched the Gilda Radner Hereditary Cancer Program in 1991. The BRCA1 gene would not be discovered until 1994, with the BRCA2 gene being discovered a year later.

“As the BRCA genes were discovered, our lab continued to work on what goes awry in a cell due to a mutated BRCA gene,” Karlan said.

She is excited about the launch of the BFOR study, which has been two years in the making. The Ashkenazi Jewish mutation for BRCA1 and BRCA2 is a “founder mutation,” Karlan explained. “When a population stays relatively insular, any genetic alteration will be amplified within that population.”

The outreach part of the BFOR program is designed to let Ashkenazi Jews know this testing is available through a simple blood draw. “It’s also about letting people decide if they want to participate and what it means,” Karlan said.

What does it mean?

“It’s letting people know that men are equally likely to carry a BRCA gene as women,” Karlan said. “That they too are at risk for cancers, and that there are things they can do to reduce those risks. [It’s letting them know] not everybody who has a BRCA gene gets cancer, and that if you do have the gene, you should let your family members know.”

Karlan said it’s estimated that 90 percent of carriers don’t know they are until someone in their family gets cancer. “But for every carrier we identify, 50 percent of their blood relatives will also be carriers.”

Outreach also includes access to educational videos, signing a consent form and filling in a family history. Participants must be at least 25 years old and have one grandparent of Ashkenazi Jewish heritage.

If people choose to go ahead with the free testing, the blood draw will be done at a Quest lab and then they can choose to receive their results from their medical provider or from one of the geneticists involved in the study in their home city.

The BFOR testing “lets people who may be afraid or may not have had the resources get the education and then have the results disclosed by a medical professional,” Karlan said, adding, “Knowledge is power. It could save your life.” While discovering new cancer treatments is always a great thing, she said, “What’s better than a new treatment and cure is prevention.”

As a result, Karlan said if the BFOR test comes back positive, there are plenty of things people can do to lower their risk of getting cancer. For women with the gene mutation, their risk of getting breast cancer is five times greater than the population’s, with an 80 percent chance of getting it in their lifetimes. “Depending on your family history, you should be screened with both MRI and mammography, and there are medications you can take to reduce the risk,” she said.

The risks of ovarian cancer in those with the gene mutation is 20 times that of the general population, Karlan said. “If women act, their overall risk can be reduced by over 80 percent. Some of these preventative methods include taking birth control pills, or having their fallopian tubes removed, because it’s thought most of these cancers arise in the fallopian tubes,” she said, noting that women can still have children through in vitro fertilization even if they have their fallopian tubes removed.


Other risks of being a carrier include melanoma, “so you can go to a dermatologist and have your skin tested,” Karlan said. There are also higher risks of pancreatic cancer, and screening can be done for that, too. For men, there is an increased risk of pancreatic cancer, melanoma, breast cancer and prostate cancer.

Karlan said she believes her secular Jewish upbringing informed her decision to help people. “I grew up in New York and tzedakah and tikkun olam were in my DNA. It’s part of our core values of who we are as people.”

She recalled an ongoing joke in her home when she was growing up on Long Island. Her father, who was an attorney, worked in Manhattan near Wall Street and would need a new coat three or four times every winter. “My mother would say, ‘Stanley, are you crazy? You’re losing your [coats]!’ But he’d see someone homeless on the street and give them his coat.”

As the first physician in her family and the oldest of three girls, Karlan said her decision to become a doctor had a lot to do with the fact that her father always wanted to be a physician but there was no night school that he could attend. “And I also had a crush on Dr. Kildare,” Karlan said, laughing about the TV character played by Richard Chamberlain.

The first female oncology fellow at Cedars-Sinai, Karlan has been at the forefront of a lot of firsts. She was the only female in her medical school class at Harvard MIT, and throughout her career “there were times you learned to work harder,” she said. “To be accepted, you had to do better. You learned to have a thicker skin. When I was doing a surgery rotation, men were surprised I could stand in the operating theater for long hours. They’d say to me, ‘Are you tired? Do you need to sit down?’ Or I’d come out of the [operating room] and they’d say to me, ‘Who picks up your dry cleaning?’ ”

But her hard work has paid off. Now, she’s focused on the BFOR study and hopes those who fit the criteria will consider taking part in the study.

“I urge people, as we approach Pesach and celebrate our freedom, that they recognize that knowledge discovery is part of that, and it may be a good time to think about family history, to think about things that run in your family and ways to make the world a better place by keeping people healthy.”

To learn more about the BRCA genetic mutation testing, visit

At Valley Beth Shalom, a Sephardic Service With a Twist

Asher Levy. Photo courtesy of Asher Levy

It was Friday night at Valley Beth Shalom (VBS) when Rabbi Ed Feinstein explained the difference between how Sephardic and Ashkenazi Jews pray. “Sephardim bring their bodies with them to temple,” he told the 100 or so congregants, “while Ashkenazim usually leave their bodies at home.”

The next hour and a half proved Feinstein right.

Welcome to VBS’ Sephardic Service, led by Asher Levy, 23, the synagogue’s musician-in-residence, who played a lute-like instrument called an oud and sang the hypnotic pizmonim (chants) of the Aleppo Halabi community. The congregants — a mix of Sephardim and Ashkenazim — caught the infectious spirit of the service and sang enthusiastically, swaying and clapping in rhythm.

Though Levy’s Syrian-Jewish family has been in the United States for generations, his Hebrew prayers — sung Middle Eastern-style, where a single syllable of text sometimes gives rise to a dozen musical notes — bore the strong guttural aspirants of Arabic. Levy not only has natural gifts as a musician and singer with a haunting tenor voice, he also has immersed himself in the prayers, songs and accents of his Syrian ancestors.

Levy gained his familiarity with Sephardic tradition from his grandfather and his father, Rabbi Jay Levy, formerly the rabbi of Sephardic Temple Tifereth Israel. “I learned a lot from elders in the community, who taught me to pray in the Sephardic nusach,” the style of the prayer service.

Asher Levy sees his current task as the “preservation and proliferation” of Sephardic music and culture.

As Levy (and the congregants) chanted poetic homages to God, to Shabbat, and to life itself — more and more intensely with each repetition — the result was a trancelike liturgical/spiritual experience. It was deeply religious, but it could have been part of a secular performance of Middle Eastern music.

Besides Levy, there were three others in the group: Jamie Papish played a doumbek, a goblet-shaped drum, and  his soulful drumbeats felt like they were in sync with the listener’s heartbeat. Phil Baron, VBS cantor, played tambourine and recited poetic prayer passages in English. Rabbi Jay Levy, Asher’s father, played harmonium and baglama, a small stringed instrument.

Rabbi Levy had his own way of explaining the distinction between styles of prayer. An Ashkenazi cantor “is like an opera singer the congregation passively listens to,” he said. “In a Sephardic service, the cantor leads the congregation in communal chants where everyone participates, chanting along and clapping to the rhythm.”

The VBS Sephardic service isn’t only different from an Ashkenazi service, Asher Levy said, it also contrasts with a typical Sephardic service: It’s egalitarian and liberal (men and women sit together and participate equally), and musical instruments are used, with electronic amplification.

“What I’m trying to do here is bridge the two worlds I grew up in,” the younger Levy said. “The musical instruments and the egalitarian practice of liberal Judaism joined with prayers of various pan-Sephardic communities: the Jews of Syria and Egypt and Morocco and Iraq, and the Ladino Jews of the former Ottoman Empire. I want to bring those practices and that music and that ineffable feeling … to a liberal Jewish space. And we’re doing it with traditional instruments, with instruments of the Sephardic Diaspora.”

Valley Beth Shalom’s Sephardic Friday night service, known as T’marim (Hebrew for dates), won’t return until January, recurring after that on the fourth Friday of each month. The service starts at 6:30 p.m., preceded by a 6 p.m. mezze (hummus, tahini, vegetables, pitta, fruit).

Asher Levy sees his current task as the “preservation and proliferation” of Sephardic music and culture. “My goal … is to revitalize and bring new music into the spiritual life of this community. The way I do that is by bringing the music of my upbringing into a community where the music has been overwhelmingly Ashkenazi.”

With VBS’ significant population of Sephardic and Mizrachi Jews, including many Persian Jews, he welcomes the opportunity to offer the traditional Sephardic prayer service in a contemporary context.

“Blending the modern and the traditional is something that’s really unique,” he said, “and it’s uniquely suited to this community.”

Experts at Israel conference call for expanded cancer screening

Half of those who could benefit from a life-saving cancer gene test are not eligible for the screening under the current rules, 30 leading cancer researchers announced at a joint news conference in Jerusalem.

The researchers called for more inclusive testing for the BRCA1 and BRCA2 gene mutations following a July 10-11 gathering hosted by the Soroka Medical Center and the Israel Healthcare Foundation.

Ashkenazi women are particularly frequent carriers of the gene mutations, which are closely associated with breast cancer, studies found.

The current rules only allow for people who report a family history of cancer to have the gene screening. Discovering the gene mutation early could give carriers the choice of possibly lifesaving measures, including prophylactic measures such as mastectomy.

“We found that if you are in certain groups that not having a family history does not mean that you should not be tested since you might have a cancer-causing mutation,” asserted Dr. Larry Norton, medical director at the Evelyn H. Lauder Breast Center at Memorial Sloan Kettering in New York City at a news conference following the conference. Norton chaired the conference.

According to studies, women carrying a BRCA mutation have up to an 85 percent chance of developing breast or ovarian cancer in their lifetimes, and men carrying the mutations are also substantially at risk.

“Indeed, testing all Ashkenazi Jews, as an example, finds twice as many people with mutations as testing just those with family histories,” Norton said. “This indicates that the rules for testing need to be changed. It also means that the psychological, medical and economic consequences of broader testing needs to be evaluated.

“Knowing that one has a dangerous mutation could well be life-saving,” he added, “since one can do things that minimize one’s risks.”

Norton added that the panel intends to write a follow-up paper summarizing findings and providing research about prophylactic procedures.

Prominent scholars blast theory tracing Ashkenazi Jews to Turkey

Prominent scholars of Jewish demography dismissed the findings of a newly published genetic study suggesting that today’s Ashkenazi Jews originate from converts to Judaism in what today is Turkey.

Titled “Localizing Ashkenazic Jews to primeval villages in the ancient Iranian lands of Ashkenaz,” the study by the University of Sheffield geneticist Eran Elhaik and three other researchers appeared in March in Oxford University Press’ prestigious scientific journal Genome Biology and Evolution.

It is based on an analysis of the genomes of 367 people, mostly from the United States, who reported having Ashkenazi lineage. Using a tool called geographic population structure, the researchers compared their genomes to those of non-Jews from German lands, south Russia and the Middle East. A match was found between the Jewish group’s genetic information and that of populations in northeastern Turkey.

In an interview with JTA, Sergio DellaPergola, a prominent demographer of the Jewish people from the Hebrew University of Jerusalem, called the study, which was widely reported in mainstream media, “one of the big canards of the 21st century,” citing what he regarded as an exceedingly small study population and the absence of genetic analysis of Sephardic Jews, which he said would have undermined the findings.

Shaul Stampfer, a professor of Soviet and East European Jewry at the Hebrew University, in an email to JTA said of Elhaik’s research: “It is basically nonsense.”

DellaPergola said that “serious research would have factored in the glaring genetic similarity between Sephardim and Ashkenazim, which mean Polish Jews are more genetically similar to Iraqi Jews than to a non-Jewish Pole.”

He noted the “great genetic similarity” between Ashkenazim and the Jews of Rome, who came from the Land of Israel and later from the Mediterranean. “In no way the explanation that Elhaik gives of the origins of the Jews in Europe can apply to the Jews of Rome. Therefore his explanation is wrong,” DellaPergola said.

Calling Elhaik’s work “a falsification,” he added that Elhaik’s team “removed from the equation the population groups that would have refuted their findings, and then selected the results they wanted to find.”

Asked for a reaction, Elhaik wrote in an email to JTA: “Our study is the largest genomic study on Ashkenazic Jews to date and the first of its kind on Yiddish speakers using an unbiased tool that returns the geographical coordinates where target DNA has originated.”

He added that “studying the DNA of non-Ashkenazic Jews would not change the DNA of Ashkenazic Jews nor the predicted origin of their DNA (i.e., ‘ancient Ashkenaz’ in northeastern Turkey). The proximity of “ancient Ashkenaz” to Slavic lands, rather than to Germany is further evidence to support the hypothesis of the Slavic origin of Yiddish.”

Stampfer has criticized Elhaik’s research before, including Elhaik’s 2012 study, also published in Genome Biology and Evolution, titled “The Missing Link of Jewish European Ancestry: Contrasting the Rhineland and the Khazarian Hypotheses.”

In that study Elhaik supports a disputed theory that centers on the presumed mass conversion to Judaism of the Khazars — an extinct multiethnic kingdom that included Iranians, Turks, Slavs and Circassians — in the eighth century. Largely unsupported by genetic studies, it is popular in anti-Semitic and anti-Zionist literature because it “is seen to dispel the notion of Jewish peoplehood, presenting it as a hoax,” DellaPergola said.

Rice and beans for Ashkenazi Jews on Passover?

Seder tables in Conservative Jewish homes may look different this Passover, and it’s not because of a new popular cookbook or changes to the haggadah

It’s because the Conservative movement has officially decided that kitniyot — which include common foods such as rice, corn and beans — are now permitted for Ashkenazi Jews on Passover, overruling about seven centuries of Ashkenazi custom that banned those foods. The Passover prohibition persisted even though all Jewish legal authorities agree that kitniyot are not chametz, which is why so many other Jews, including Reform and Israeli Conservative Jews, as well as Orthodox Sephardic Jews, eat them during the eight days of Passover. 

The technicalities of the new ruling can be a bit confusing, but they’re laid out by the Conservative movement’s Committee on Jewish Law and Standards (CJLS) in a legal document titled “A Teshuvah Permitting Ashkenazim to Eat Kitniyot on Pesach” published in November. It removes all restrictions on kitniyot for Conservative Jews — restrictions that Orthodox Ashkenazi Jews will continue to follow.

The opinion, written by Rabbi Avram Israel Reisner of Baltimore and Rabbi Amy Levin of Bridgeport, Conn., was approved by the Conservative Rabbinical Assembly by a vote of 19-1. Its argument centers around three key points: First, that the custom of Ashkenazi Jews to not eat kitniyot on Passover is lacking in strong rational justification. Second, access to inexpensive foods like rice and beans reduces the high cost of observing a kosher Passover for American Jews. And third, for the increasing number of people who maintain vegan or gluten-free diets, rice, beans and other grains are important sources of nutrition.

A similar responsum written in Israel by Rabbi David Golinkin allows Ashkenazim to eat kitniyot on Passover; it was approved in 1989 by Israel’s Conservative movement. The Israeli responsa has now been translated to English and was voted on by the CJLS in December, passing 15-3. The Israeli responsa draws a similar conclusion, albeit through different reasoning.

Prohibitions against kitniyot are not based on Torah law or rabbinic law, but rather on Ashkenazi custom. About 700 years ago, rabbis in France began referring to a custom of some Jewish communities to avoid kitniyot, a label derived from the word katan (little), which includes rice, millet and legumes broadly, and beans, corn, peas, lentils and soybeans, more specifically. Everyone agrees that chametz — leaven derived from wheat, oats, spelt, rye and barley — is strictly prohibited on Passover. The custom to avoid kitniyot derived from two precautions: First, because kitniyot are sometimes grown in close vicinity to the five chametz grains, rabbinic authorities worried that chametz might mix with and accidentally contaminate otherwise kosher-for-Passover food. Rabbinic authorities also were concerned that Jews might confuse chametz with kitniyot, as they share some resemblance. 

Today, according to Orthodox law, the custom to avoid kitniyot on Passover is binding on Jews of Ashkenazi descent, regardless of where they live. But Sephardic Jews, whatever their denominations, do not follow this custom and enjoy the full range of kitniyot products throughout Passover, making Passover’s shopping experience and diet easier and more enjoyable. 

Rabbi Elliot Dorff, a professor of philosophy at American Jewish University and chairman of the CJLS, who eats fish but not meat, said that despite the ruling, his wife plans to continue to observe the custom, so there will be no kitniyot in their home during Passover. Dorff stressed that the Conservative movement’s change “should not be the occasion for looking down your nose, either at the people who do eat kitniyot or people who do not.”

One issue the teshuvah touches on, and which Dorff mentioned in the context of eating at other people’s homes on Passover, is that even under halachah, there is no issue with using kosher-for-Passover utensils that have come in contact with kitniyot, which is not true of Passover-kosher utensils that have come in contact with chametz.

“Kitniyot cannot become chametz,” the teshuvah says. 

Additionally, derivatives of kitniyot — such as rice oil — remain fully acceptable for Ashkenazim who continue to hold by the custom.

The teshuvah guides the reader through the historical rabbinic debate on the topic, highlighting those who believed in the custom, those who thought it stringent but nevertheless thought it should remain, and those who thought it was a mistake.

Rabbeinu Peretz, for example, wrote in the 13th century that there’s no doubt kitniyot is not chametz, but added, “Were we to permit kitniyot, [people] might come to substitute and permit [grain-based] porridge.” And while Peretz noted the Talmud allows rice on Passover, “This was specifically in their day, when all were fluent in the laws of prohibition and permission.”

But Jacob Emden, an 18th-century German-Jewish scholar known as Ya’avetz, wrote that his father, Tzvi Hirsch Ashkenazi, would “rant” against the custom of avoiding kitniyot, largely on the basis that they are “available cheaply and easily,” and that their exclusion forces Ashkenazi Jews to bake and consume more and more matzo, increasing the chance that they’ll inadvertently consume chametz. (In those days many families baked their own matzo, which requires sharp precision.)

Ya’avetz wrote that his father, also known as the Chacham Tzvi, awaited the day when scholars would abolish the custom but did not support doing so “without the agreement of the majority.”

But even with a majority agreement, the teshuvah notes, rabbinic authorities cited the opinion of Maimonides, perhaps the greatest rabbinic scholar in Jewish history, that “only a greater court than the originators” has the authority to reverse not just law, but custom, too.

In justifying its ruling, the Conservative responsa begins by casting doubt on the possibility of mixing chametz with kitniyot “in the present age when we purchase our flours, rice and beans in discrete packages, well-marked as to their content, under governmental supervision.” A footnote, though, does caution against buying in bulk on Passover from any grocers that dispense food from bins, such as in some natural food stores. 

While acknowledging the importance of maintaining customs, the teshuvah’s authors note that while some Jewish communities “insist upon dressing as did the Jews of Poland several centuries ago, in our community that has been allowed to change.”

The ultimate rationale behind the Conservative committee’s ruling comes down to the practicalities of economics and nutrition, and their belief that “resistance to change is the sole reason not to consider a change” in this custom.

With the growth in vegetarianism, the authors argue, beans, for example, “serve in the absence of meat as a significant source of protein.”

“It’s about time!” Rabbi David Wolpe of Sinai Temple wrote in an email to the Journal when asked about his thoughts on the ruling. He said he understands “the force of custom,” but, as a vegetarian, he has been eating kitniyot over Passover for years.

“It was based on a misunderstanding and lack of information, so to my fellow kitniyot consumers, welcome to a Pesach no less kosher and much more nourishing,” Wolpe said.

“We now have many more people who are vegans, and we also have people who are known to have gluten allergies,” Dorff notes. “For them, what is permissible on Passover is much more restrictive than it is for the rest of us. Especially for vegans, there was really nothing to eat on Passover. There was really very little, if you do not allow kitniyot.”

“The positive mitzvah of joy on the holiday will not be well expressed on the depleted table of those who do not eat fish or meat, or even cheese and eggs,” responsa authors Reisner and Levin write, adding that the halachic aphorism that the Torah wants to protect the Jewish people’s money is relevant in increasing access to relatively inexpensive foods, like beans and rice, and thereby alleviating the financial pressures many Jews feel when shopping for expensive Passover products.

Rabbi Micah Peltz of Temple Beth Sholom in Cherry Hill, N.J., the lone holdout on the otherwise unanimous committee, said he doesn’t believe the decision to lift the restriction on kitniyot is justified by the teshuvah’s reasoning. Peltz said law and custom are changeable, but only when done to “address an ethical dissonance between halakha and the prevailing values of our generation,” which he believes is not the case here. He wrote this with four other rabbis in a January op-ed for the South Jersey Jewish Voice.

In an interview with the Journal on April 11, Peltz said he thinks the economic benefits of allowing kitniyot are limited, as they won’t replace the most expensive Passover food items and because many kitniyot products still require a special kosher-for-Passover certification. He said he could also foresee the ruling creating a division among Ashkenazi Jews, even as it may help bridge a divide between Ashkenazim and Sephardim.

“Kitniyot is not law. It is tradition, and I think that’s something that’s very powerful for people, and I think by throwing off the tradition for everyone en masse, by making that statement, I think it does more harm than good,” Peltz said.

The Reform movement has never prohibited kitniyot. Rabbi Leora Kaye, program director for the Union for Reform Judaism, said the reasoning is simple: “Kitniyot is not chametz, and therefore there is no prohibition against eating kitniyot.” Like Dorff, though, she understands that avoiding kitniyot is an “integral piece” of how some Jews observe Passover.

Kosher-for-Passover-certified kitniyot products have become increasingly available in the United States over the past few years, particularly since the Orthodox Union announced in early 2013 that it would certify products with kitniyot that are kosher for Passover. In Los Angeles, some kosher grocers, such as Glatt Mart, Elat Market and Cambridge Farms, sell kitniyot products on Passover, while others, such as Western Kosher, do not.

Dorff said that, based on the preponderance of Passover kitniyot products available in stores in Israel, he expects they will become more and more common in the U.S., as well.

“If Israel is at all a model for us, my guess is that not only this year but in [future] years, there will be more and more of those things,” Dorff said. 

Rare numbing disease that plagues Jews has diagnosis, but no cure

David Epstein went to his doctor in 1997 to see why he was going to the bathroom so frequently and what was causing his fingers to go numb.

Years of doctor visits, medical testing and prescription medications led nowhere. Meanwhile, the numbness gradually moved up his limbs – and his brother in Colorado began experiencing similar problems.

Finally, in 2011, Epstein, who lives in the Leisure World retirement community here, learned he had Adult Polyglucosan Body Disease, or APBD, a genetic disorder with no treatment or cure. The disease results in reduced activity of the glycogen branching enzyme, which is used to make glycogen. Glycogen is the reserve fuel stored in a person’s cells.

One in 68 Ashkenazi Jews is a carrier of at least one of the two gene mutations that cause this frequently misdiagnosed disease. The carrier frequency among the general population is unknown but lower, said Dr. Jeff Levenson, a volunteer assistant at the Adult Polyglucosan Body Disease Research Foundation in New York.

For a person to inherit the disease, both parents must be carriers.

A test for the mutations has only been recently added to a disease panel that Ashkenazi Jews can be tested for at Mount Sinai Hospital in New York. Levenson is hopeful that once more people learn about APBD, testing for the mutation will increase.

A person with the disease has a shorter than average life expectancy, Levenson said. “Usually by age 50, although we have patients in their 30s,” APBD “wreaks havoc” on the bodies of people with mutations to this enzyme, he said.

APBD is extremely rare; only 160 to 200 cases have been documented. But Levenson believes “there are thousands out there” living with undiagnosed APBD.

Sufferers often are told they have multiple sclerosis, Lou Gehrig’s disease, prostate disease or some form of nerve damage, and suffer though years of medical testing and treatments.

“On average, it takes seven years to find a diagnosis,” Levenson said.

Meanwhile, numbness continues to move from the outer extremities up the legs and arms. Balance is affected.

“I went through the medications and nothing worked,” Epstein said.

Almost 15 years after the onset of symptoms, Epstein, 70, finally received the correct diagnosis after undergoing tests at the Kennedy Krieger Institute in Baltimore.

By this time, numbness had “slowly worked its way up from my feet, to my ankles, shins and knees. It’s progressive so the further down the leg, the more the numbness,” said Epstein, who is retired from his job as a financial manager with the federal government.

He occasionally uses a cane while walking at night. Epstein said his brother, Howard, needs a wheelchair.

While frustrated with his doctors’ ignorance about the disease, Epstein said his condition would likely be the same even if he had been diagnosed right away because there is no treatment for APBD.

He tries to stay active by walking, riding a stationary bike and doing balancing exercises with a physical therapist. “Hopefully this will delay,” Epstein said, referring to the increased medical problems he knows are headed his way.

A 70-year-old Atlanta attorney, who asked that his name not be used, isn’t sure how long he’s had APBD symptoms. He didn’t go to the doctor early on for what he considered minor problems, said his wife.

The attorney retired when he was in his early 60s, and around that time he began stumbling and appeared stooped over. One of his two children told him he seemed drunk, his wife recalled. He soon found himself exhausted after only walking a block, whereas he had previously traversed an 18-hole golf course on a regular basis, she said.

He now needs a wheelchair to get around.

At various times, the attorney was told he had neurological problems or advanced multiple sclerosis and was given “heavy drugs,” his wife said.

Both Epstein and the Atlanta couple are involved in efforts to increase the number of people on the Adult Polyglucosan Body Disease Research Foundation’s patient registry.

“It allows researchers to understand more of the natural history of the disease, how it progresses over time,” Epstein said of the registry, which includes medical histories.

Playing on the acronym for the disease, the foundation encourages anyone who (A) is an Ashkenazi Jew, (P) has peripheral numbness or weakness, (B) uses the bathroom frequently and (D) has diminished energy to take a saliva sample that Columbia University in New York will analyze to check for the disease.

The foundation created a two-page open letter to Jewish community members and leaders that explains the disease, urging anyone who suspects they may have it to get in touch. With more patients on the registry, the chances of a drug company working for a cure increases, according to the letter.

Very little research is taking place now, said Levenson.

“This is really the wild, wild West,” he said.

Aliyah debate exposes French Jewry’s internal fault lines

A burst of applause greeted Holocaust survivor Marek Halter and his close friend, Imam Hassen Chalghoumi, as they entered the Synagogue de la Victoire together in January.

Halter, a celebrated author and friend of French Prime Minister Manuel Valls, is known for his outreach to moderate Muslims, and his appearance with Chalghoumi at the packed synagogue on Jan. 11 was seen as a hopeful sign after the murder of four Jews two days earlier at a kosher supermarket near the capital.

As the rising tide of anti-Semitic violence in France has led to record levels of immigration to Israel, Halter has emerged as a leading voice urging French Jews not to flee. In January, he published a 63-page manifesto, titled “Reconcile Amongst Yourselves,” that urged French Muslims and Jews to work together to make France a more tolerant place for minorities.

French Jews should “stay and fight for their place in society instead of packing their bags and leaving in the face of adversity,” Halter told JTA.

Halter is among the most prominent French Jews to urge his coreligionists to stick it out in France, but his campaign is exposing tensions between integration-minded progressives — many of them Ashkenazi, like himself — and a more insular Sephardic majority that favors aliyah.

Sephardic Jews are believed to constitute a disproportionate number of French immigrants to Israel — 80-90 percent, according to Sergio DellaPergola, a sociologist at Hebrew University and one of the world’s foremost experts on Jewish demography. Overall, Sephardim represent about two-thirds of French Jewry.

The overrepresentation of Sephardim, according to DellaPergola, owes to “traumas that many North African Sephardim who settled in France after the 1950s brought with them, from living in Muslim societies where many enjoyed a peaceful coexistence, but where many others were beaten and discriminated against.”

Violent anti-Semitism “brings back very unpleasant memories for Sephardic Jews, who already have a higher propensity to make aliyah also out of religious sentiment as they come from more traditionalist societies,” DellaPergola said.

Last year, 7,231 French Jews moved to Israel, a record-setting figure nearly three times the number who came in 2012 and which made France the world’s largest source of new Israeli immigrants. After the supermarket killings and the murder of a volunteer security guard outside a synagogue in Denmark, Israeli Prime Minister Benjamin Netanyahu announced that Israel was preparing for massive immigration and urged European Jews to consider the Jewish state their home. Some officials at the Jewish Agency, the semi-official body that coordinates global aliyah, expect as many as 15,000 Jews to arrive from France this year.

Following the attack at the Hyper Cacher market, Halter’s call for French Jews to stick to their proverbial guns was joined by other members of the French Jewish elite, including the philosopher Bernard-Henri Levy and French Chief Rabbi Haim Korsia, who during the same meeting at Synagogue de la Victoire said, “Aliyah should never be the result of fear, only of an internal calling.”

But Siona, a group representing Sephardic French Jews, responded forcefully to a reproachful Halter Op-Edpublished in Le Monde last year urging Jews not to abandon their country to jihadists and the far-right National Front party.

“Instead of advising French Jews on a reality he does not know, Marek Halter should devote himself to the international salons he attends and the world greats he meets,” Siona’s president, Roger Pinto, said in a statement that seemed to underline widely held perceptions of a disconnect between the French Jewish elite and its rank and file.

The discourse reflects a “growing split in the different attitudes to aliyah — not so much between Sephardim and Ashkenazim, but between a traditionalist majority where Sephardim constitute a strong element, and a secularist elite that has some prominent Ashkenazim, but also Sephardim,” said Karin Amit, an expert on French Jewry at the Ruppin Academic Center in Israel.

Hundreds of thousands of North African Jews immigrated to France in the 1950s, along with millions of Muslims. Replenishing the ranks of a community that lost a third of its members in the Holocaust, the newcomers inherited the community’s leadership from a declining population of Eastern European Jews. Current aliyah trends may return the leadership mantle to more secular and more assimilated Jews, DellaPergola said.

Among those determined to stay is Gilles Goldberg, an Ashkenazi businessman from the affluent suburb of St. Mande and one of those who applauded Halter at the synagogue on Jan. 11.

“Halter speaks for me because I agree that the current problems mean we need to work harder than ever on a solution,” Goldberg said. “But some of my friends, especially Sephardim, turn inward or to Israel for the answer.”

One of those friends is Serge Perez, who was born in Algeria and left after the start of the country’s civil war in the 1950s. Perez now lives in Paris, in a poor and heavily Muslim part of the city that provided some 40 percent of Jewish immigration from the Paris region.

“Some give French Muslims and society the benefit of the doubt,” Perez told JTA at the synagogue. “But I have no doubt: French society gave up its Jews once and will again. And the Muslims, if they’re a majority where I live, I will live elsewhere.”

Jewish movement disorders and genetics

As I was sitting (and standing) in a synagogue over the holidays I let my mind wander, as I often do under similar circumstances, and tried to answer the eternal question: If God designated the Jews as the “Chosen People” why did he/she also referred to them as the “stiff-necked people”? (Exodus 32:9: “I have seen this people, and behold, it is a stiff-necked people”). Was God making an analogy between hard-to-control oxens and the stubborn and obstinate Isrealites who used them to plow the fields? While this is one explanation offered by Jewish scholars for the term “stiff-necked people”, as an academic neurologist, specializing in movement disorders, and someone who likes to challenge an established dogma, I raise the possibility that the stiff-necked Jews had a neurologic condition that caused neck spasms and/or neck stiffness. After all, it is well-accepted that Moses had a neurological condition that apparently caused a speech impediment (stuttering). Indeed, it is also well known that over the centuries and possibly millennia, Jews have had an increased risk for a variety of neurologic conditions, called movement disorders. This important association of neurologic movement disorders in people of Jewish ancestry has been recently described in a scientific article in JAMA Neurol (1), but I thought it would be important bring this to the attention of readers of this journal. 
Recent analysis of DNA sequences shared by Ashkenazi Jewish (AJ) individuals has provided insight into early Ashkenazi history. This research suggests that the world AJ population shrunk to only 350 as recently as 700 years ago (“bottleneck”) and that subsequent AJ generations, now totaling in millions, were a mixture of European and Middle Eastern ancestry (2). Because of intermarriages various genetic metabolic and neurologic diseases, such as Tay-Sachs, Niemann-Pick disease, mucolipidosis type IV, and Gaucher disease, became more common in the AJ population. In this review we wish to focus on neurologic diseases,categorized as movement disorders, that are being increasingly recognized to be relatively more frequent in people of Jewish ancestry compared to general population. 
What are movement disorders? Movement disorders is a group of neurologic conditions that can be divided into slow movements (hypokinetic disorders) or abnormal involuntary movements (hyperkinesias). The best example of a hypokinetic movement disorder is Parkinson’s disease. Hyperkinetic movement disorders are subdivided into tremors, dystonia, tics, chorea, athetosis, ballism, stereotypy, and akathisia. The latter term, akathisia, refers to motor restlessness, known in Yiddish as “the shpilke”. Restless legs syndrome, another movement disorder that could be described as “the shpilke”, refers to restlessness that occurs chiefly at night and predominantly involves the legs. Furthermore, incoordination, gait and balance disorders, and abnormalities in muscle tone (such as spasticity and rigidity) are also included among movement disorders (3,4). While the basal ganglia, the deep part of the brain that is involved in the fine controls of body movements, have been implicated in most of the movement disorders, there are many other parts of the central and peripheral nervous system that may be involved. Since the diagnosis of a movement disorder is based on accurate recognition of specific phenomenological features, clinicians who encounter patients with movement disorders must use their powers of observation to carefully characterize the disorder. Therefore, the phenomenological categorization of the movement disorder is absolutely critical in formulating the differential diagnosis, finding the cause, and selecting the most appropriate treatment (5). 
The following is a brief summary of the most common movement disorders highlighting those that are particularly common in people of AJ ancestry.
Parkinson’s Disease
Parkinson’s disease is a neurodegenerative disease starting typically in the 6th progressive slowness of movement, tremor, stiffness (rigidity), and gait and balance problems, and a variety of motor and non-motor symptoms. Although dopamine deficiency is the main neurotransmitter abnormality in the brains of patients with Parkinson’s disease, there are many other biochemical and pathological changes that result in the rich variety of symptoms associated with the disease (6). 
While only about 5% of patients in general population have a specific genetic mutation causing their Parkinson’s disease, more than a third of all Israeli AJ Parkinson’s patients carry at least one of two mutations: GBA or LRRK2 (1). GBA gene, localized on chromosome 1, encodes the enzyme glucocerebrosidase, which is deficient in Gaucher disease, a rare metabolic disease, causing anemia, enlarged liver, and a variety of neurologic abnormalities. Mutations in LRRK2 gene (chromosome 12) have been identified in less than 4% of patients with Parkinson’s disease in general population but abnormalities in the LRRK2 gene account for about 30% of Parkinson’s cases in AJ patients. The original mutation in this gene has been estimated to have occurred in the North African Arab-Berbers between the 13th and 2nd century BC. Others have suggested that the founder lived 4,000 or 2,250 years ago in the Near East, when the ancestral Jewish and Arab populations lived in close proximity. 
Dystonia is neurologic movement disorder characterized by sustained or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both (7). The condition was first described in 1911 by a German-Jewish neurologist Herrman Oppenheim (8). Oppenheim described four Jewish children who were referred to him from Galicia and Russia. He noted that these children had several features in common: 1) muscle spasms affecting limbs and trunk that resulted in twisted postures; 2) these abnormal movements worsened with walking and were associated with bent spine resembling the walk of a camel (dromedary gait); 3) the movements were rapid, but also sustained and rhythmic; 4) the postures progresses to fixed deformities; 5) muscle tone was either decreased or increased (spasmodic), but 6) there were no mental problems, weakness, or any other neurological abnormality. In addition to limbs and trunk, dystonia can affect the face and cause involuntary closure of the eyes due to contractions of the eyelids (“blepharospasm”), spasms of the jaw, tongue and other parts of the mouth and lower face (“oro-mandibular dystonia”), muscle contractions and turning of the neck (“torticollis” or “cervical dystonia”), spasms of the vocal cords (“spasmodic dysphonia”) and other involuntary muscle spasms. Dystonia may present only during specific activities (“task-specific dystonia”), such as a tight grip and painful spasm of the hand when writing (“dystonic writer’s cramp”), or during other occupational and sports activities and while performing a specific task, such as playing a musical instrument (9). One of the most recognized musicians whose career was severely impacted by focal, task-specific dystonia of his right hand was the world-renown concert pianist Leon Fleisher ( Even a common problem, such as golfer’s yips, have been attributed to task-specific dystonia (10). In some cases dystonia may progress very rapidly and evolve into a “dystonic storm” which can be life-threatening.
Although dystonia has been attributed to a dysfunction of the basal ganglia and its connections, the major advance in the understanding of genetic causes of dystonia has come with the discovery the most common genetic (Oppenheim’s) dystonia, now referred to as DYT1 (also known as TOR1A) dystonia. Mutation in the DYT1 gene on chromosome 9 resulted in an abnormal function of a protein called torsinA. This mutation, which occurs 5-10 times more frequently in the AJ population as compared to non-AJ populations, was apparently introduced in the AJ population about 350 years ago in Lithuania or Byelorussia. It is responsible for approximately 90% of childhood-onset cases of dystonia in people of AJ ancestry. 
There are now many treatment options for patients with dystonia. In 1987, we were the first to publish a double-blind, placebo controlled study of botulinum toxin treatment of patients with face and neck dystonia (11). Subsequent studies confirmed the efficacy and safety of botulinum toxin in many other forms of dystonia and other neurologic and non-neurologic disorders. Indeed Botox, one form of botulinum toxin, has become one the most recognized medicinal brands, used by nearly all disciplines of medicine. Other treatments of dystonia involve the use of medications that modify brain neurotransmitters and deep brain stimulation (12). 
In addition to certain forms of Parkinson’s disease and dystonia, there are many other neurological movement disorders occurring with higher-than-expected frequency in people of Jewish descent. These include Creutzfeldt-Jakob disease, which is particularly common in Sephardic Jews of Libyan and Tunisian ancestry. The disorder is manifested by a rapidly progressive neurological dysfunction, jerk-like movements (myoclonus), and cognitive impairment. Cerebrotendinous xanthomatosis, particularly common in Moroccan Jews, is characterized by juvenile cataracts, lipid accumulations in tendons, and a variety of neurological abnormalities, including parkinsonism, dystonia, and myoclonus. Machado-Joseph disease (also known as SCA3), characterized by progressive incoordination (ataxia), parkinsonism, spastic paraplegia, and restless legs syndrome, originated in a Portuguese Azorean family, but was also noted to have a high prevalence among some Yemen Jews. 
It is my hope that this brief review will increase awareness about movement disorders and highlight the importance of genetic counseling, particularly among Jewish people who have a family history of neurologic movement disorders, such as Parkinson’s disease, dystonia and other diseases manifested by incoordination or abnormal involuntary movements.
Joseph Jankovic, MD is Professor of Neurology, Distinguished Chair in Movement Disorders, Director, Parkinson's Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas


1. Inzelberg R, Hassin-Baer S, Jankovic J. Genetic movement disorders in patients of Jewish ancestry. JAMA Neurol 2014, in press).

2. Carmi S, Hui KY, Kochav E, et al. Sequencing an Ashkenazi reference panel supports population-targeted personal genomics and illuminates Jewish and European origins. Nat Commun. 2014 Sep 9;5:4835).

3. Fahn S, Jankovic J, Hallett M. Principles and Practice of Movement Disorders, Churchill Livingstone, Elsevier, Philadelphia, PA, 2011:1-548.

4. Albanese A, Jankovic J, Eds. Hyperkinetic Movement Disorders. Wiley-Blackwell,Oxford, UK, 2012:1-390).

5. Jankovic J. Treatment of hyperkinetic movement disorders. Lancet Neurol 2009;8:844-56.

6. Jankovic J, Sherer T. The future research in Parkinson’s disease. JAMA Neurol 2014 (in press).

7. Albanese A, Bhatia K, Bressman SB, Delong MR, Fahn S, Fung VS, Hallett M, Jankovic J, Jinnah HA, Klein C, Lang AE, Mink JW, Teller JK. Phenomenology and classification of dystonia: a consensus update. Mov Disord. 2013 Jun15;28(7):863-73).

8. (Klein C, Fahn S. Translation of Oppenheim's 1911 paper on dystonia. Mov Disord. 2013 Jun 15;28(7):851-62.

9. Jankovic J, Ashoori A. Movement disorders in musicians. Mov Disord 2008;14:1957-65.

10. Dhungana S, Jankovic J. Yips and other movement disorders in golfers. Mov Disord. 2013 May;28(5):576-81.

11. Jankovic J, Orman J. Botulinum A toxin for cranial-cervical dystonia: A double-blind, placebo-controlled study. Neurology 1987;37:616-623.

12. Thenganatt MA, Jankovic J. Treatment of dystonia. Neurotherapeutics. 2014 Jan;11(1):139-52.

L.A. Cancer Challenge: Running for lives of others

When thousands of racers line up at the Veterans Affairs grounds in West Los Angeles on Oct. 26, it will be to raise awareness for a devastating type of cancer sometimes linked to mutations in the BRCA1 and BRCA2 genes that are more prevalent in Ashkenazi Jews.

But it’s not breast cancer; it’s pancreatic cancer, which this year is projected to take the lives of nearly 40,000 Americans. 

Last year’s L.A. Cancer Challenge (LACC) benefitting the Hirshberg Foundation for Pancreatic Cancer Research attracted 4,000 participants and raised more than $630,000. The goal of this year’s 5K/10K walk/run is to boost that figure to $750,000 or more.

“A huge part of our mission is to unite young and old through physical fitness as a way to create awareness of the disease,” said Lisa Manheim, executive director of the foundation and stepdaughter of the organization’s inspiration, Ron Hirshberg, who died of the disease. “Our event draws a lot of families and is one of the 5K races families will do together. For many of our younger runners, it is their first race and charity event they participate in.” 

The cause is a deadly serious one. Pancreatic cancer has the highest mortality rate of all major cancers — 94 percent of patients die within five years of diagnosis, according to the American Cancer Society. 

“The frequency of pancreatic cancer is increasing,” said Dr. Howard Reber, distinguished professor of surgery, chief of gastrointestinal surgery and director of the Ronald S. Hirshberg Translational Pancreatic Cancer Research Laboratory at UCLA, which the foundation and annual run help sustain. 

“Right now, pancreatic cancer is ranked the fourth most common cause of death from cancers in the U.S., and in a few years will be the second most common cancer killer. While research and efforts leading to earlier diagnosis and more effective treatment expended by scientists and researchers are working well to reduce the numbers of colon, prostate and other cancers, they so far are not yet able to bring the numbers of pancreatic cancer cases down,” he said.

While Manheim and Reber stress their commitment to patients from all backgrounds, the foundation’s signature event holds particularly strong meaning for members of Los Angeles’ Jewish community. Despite the fact that the causes of pancreatic cancer remain unclear, it is documented that 1 percent of Ashkenazi Jews has a defective copy of one of their two BRCA2 genes, which is associated with a three- to 10-fold increased risk of developing pancreatic cancer (not to mention increased risk of breast, ovarian and prostate cancer). BRCA1 gene mutations may also cause a small increased risk of developing pancreatic cancer, according to foundation officials.

Reber, however, stressed that the risk of cancer to Jews with a defective BRCA2 gene varies in different families, and is also dependent on lifestyle factors such as smoking, diet, the inheritance of other cancer susceptibility genes and a certain element of chance.

The work that Reber and his colleagues at UCLA conduct is a continuation of the vision of Agi Hirshberg. When her husband, Ron, died of pancreatic cancer, she realized there were no major pancreatic cancer centers in the United States. She vowed to take this formidable fight to the next level.

“[Agi] decided to start a definitive pancreatic cancer organization with the rationale that if she couldn’t give to a pancreatic cancer organization, she would start one,” Manheim said. “She chose to partner with UCLA because it was where [her husband] was treated, close to home, and [she] could regularly meet with doctors and researchers. It’s been a wonderful partnership for the last 17 years, and the outcome of the race will hopefully set the course in the years to come.”

Reber said that the money raised by the race allows researchers to do more than just combat medical challenges posed by pancreatic cancer.

“The way the L.A. Cancer Challenge is staged brings into focus families of patients and patients who survived the disease,” he said. Money raised “benefits the patients and their families, who need all the help they can get, not only with medical care but with psychological support and other services beyond medicines and procedures.”

Online registration for the L.A. Cancer Challenge ( ends Oct. 24. This year’s race will have added features.

“We decided to add on-course entertainment to make the experience more enjoyable for those participating in the race,” Manheim said. “We have two live bands, three on-course DJs, hula dancers, a barber shop quartet and a slew of entertainers to keep up morale.”

Participants can also enjoy the event’s Fit Family Expo, which includes a main stage, Halloween zone and special displays from sponsors emphasizing fitness and maintenance of good health habits. 

Study: Test all women of Ashkenazi descent for BRCA defect

All women of Ashkenazi descent should be screened from age 30 for the BRCA gene mutation that causes breast cancer, an Israeli study recommends.

The study, by a research team headed by Ephrat Levy-Lahad of Shaare Zedek Medical Center, was published Friday in the journal Proceedings of the National Academy of Sciences of the United States of America.

Until now, Ashkenazi women have been tested for the BRCA1 and BRCA2 genes only if a close blood relative had breast or ovarian cancer or were identified as carrying the gene.

The research was conducted on a random group of Jewish women of Ashkenazi origin who did not necessarily have a family history of the disease.

Many of the women identified during the study as being mutation carriers would not have known otherwise, according to the study. The mutation can be handed down to women through their fathers.


Funding shortage and ignorance hurt pancreatic cancer fight

When Marilynn Lowenstein walked into shul on Rosh Hashanah two and half years ago, her friend, a doctor, took one look at her and sent her to the emergency room. Lowenstein’s skin and eyes were yellow — she was severely jaundiced.

By the time the congregation got to the “who shall live and who shall die” prayer, Lowenstein, now 62, had a probable diagnosis of pancreatic cancer.

The diagnosis didn’t surprise her. Lowenstein’s mother died of the disease at 45, and two of her mother’s uncles had also died from pancreatic cancer. But when she brought up the possibility at every annual physical, her doctors had nothing to offer — there were no early screening tests, and symptoms don’t usually manifest until the cancer has spread throughout the body.

About 95 percent of people diagnosed with pancreatic cancer will die within five years, the highest mortality rate of any cancer.

While hard numbers have not yet been established, research has shown that Ashkenazi Jews are slightly more likely to get pancreatic cancer than the general population. Recent studies have linked pancreatic cancer to a mutation on the breast cancer gene that is more common in Ashkenazi Jews than the general population, and researchers are looking for further genetic markers specific to the Ashkenazi Jews.

Because of this new information, Lowenstein believes that the Jewish community should advocate for more funding and research for pancreatic cancer. A handful of new information sources and research are targeting the Jewish population. Johns Hopkins runs the National Familial Pancreas Tumor Registry, with Ashkenazi Jews as a subcategory of that group. A page on the university’s Web site has information specifically for Ashkenazi Jews.

One new study targets the Ashkenazi population as a subgroup of those in the high risk category. The pilot study, run by Johns Hopkins University, is looking for early detection markers among people who have three family members who have had pancreatic cancer.

The first two phases of the study showed success in using endoscopic ultrasound to detect early changes or lesions on the pancreas — 10 out of 109 research subjects with no manifest symptoms were successfully operated on after lesions were detected. The third phase of the study will also include blood markers, CT scans and MRIs. UCLA’s Jonsson Cancer Center is one of five sites conducting the trials.

But such research on the pancreas is relatively uncommon. Without a robust network of survivors to lobby for funding, and with many fewer people diagnosed than with more common cancers — 34,000 to prostate cancer’s 234,000, for instance — pancreatic cancer is one of the least researched and most underfunded cancers.

“We are about where breast cancer research was in the 1930s, and it’s all about the funding,” said Liz Thompson, director of Research and Scientific Affairs for PanCAN, The Pancreatic Cancer Action Network.
The Los Angeles-based nonprofit funds research, advocates for more awareness among the general public and the government and runs support services for those with the disease.

About 565,000 Americans died of cancer last year, with lung cancer claiming more lives than any other form. Pancreatic cancer was the fourth leading cause, with 32,000 deaths, not far behind breast cancer’s 41,000, according to the American Cancer Society. The five percent survival rate for pancreatic cancer has remained steady over the past 25 years, while in the past 15 years the breast cancer mortality rate has dropped 2.3 percent every year. About 88.5 percent of the almost 215,000 people diagnosed with breast cancer last year will live past the crucial five-year mark, the American Cancer Society reports.

Lowenstein, who before she became sick taught French and headed the foreign languages department at Hamilton High School, has turned to PanCAN for information and support groups — support she couldn’t find in the Jewish community. While her synagogue, B’nai David-Judea Congregation, has come through with a steady flow of meals, rides and companionship, she can’t help but feel overwhelmed.

“I can’t begin to tell you how alone and scared I feel most of the time,” Lowenstein said.

She has beaten the odds so far. She’s had surgery, several different chemotherapies and radiation treatments, and is now on her second clinical trial. But the tumors have spread throughout her body.

Like Lowenstein, most people don’t detect the cancer until it has spread — and, unlike other cancers, pancreatic cancer spreads at very early stages. Vague symptoms such as abdominal or back pain, or jaundice, can be signs of pancreatic cancer, but they usually aren’t, and since the disease is relatively uncommon, doctors don’t usually go to that diagnosis immediately.

“I think that understanding the causes of the disease and developing early detection are the first steps to really preventing the disease or catching it when we can still treat it,” said Alison Klein, assistant professor of oncology at the Johns Hopkins School of Medicine and director of the National Familial Pancreas Tumor Registry.

People with three close family members with the disease are 32 times more likely to get pancreatic cancer than the general population, and having two affected relatives increases risk nine-fold, Klein said.
Other risk factors include high alcoholic intake, smoking, obesity and age — the disease primarily strikes people who are 70 or older.

In addition to the early detection studies, Johns Hopkins is working on a “vaccine” that would train the body to activate its own immune system when it recognizes proteins from the tumors.

For now, treatments for pancreatic cancer are primitive — mostly chemotherapy and radiation treatments developed for other cancers. No drugs have been developed specifically for pancreatic cancer.

Lowenstein was among the 9 percent of those diagnosed who are candidates for the Whipple surgery, a procedure that removes parts or all of several organs. It is a difficult surgery with a long, painful recovery — and the only chance for beating the disease.

But after the surgery Lowenstein learned the cancer had entered her lymph system. Over the past two and half years, complications from highly toxic chemotherapy and radiation treatments, unresponsiveness to therapies, and continued metastases have qualified her for some clinical trials and dimmed her hopes.

Group hopes Gaucher becomes household name

When Michael Margolis was 4, his doctor took his parents aside and told them he had a rare disorder called Type I Gaucher Disease. The disease, which strikes Ashkenazi Jews seven times more often than the general population, is a genetic disorder that robs patients of an enzyme that prevents a buildup of fatty tissues in the body. Victims develop a swollen spleen and liver, anemia-related chronic fatigue and debilitating bone pain.

In severe cases, the patient’s spleen sometimes swells so much that patient looks pregnant. Because the condition was considered incurable and untreatable until the early 1990s, Margolis and his family were told that all they could do was ignore it and hope for the best.

Doing so became harder as time went on. In their early 20s, Type I Gaucher (pronounced “go-shay”) patients typically start to go through “bone crises,” in which a buildup of fatty tissues blocks blood flow to the bones. The bones then die over a period of weeks in a gangrene-like process, leaving the patient in debilitating pain. Left untreated for a long time, patients develop weak skeletons and often need both hips replaced. They may also need their spleens removed to stop the progressively larger swelling of the organ that characterizes the disease.

All of that was happening to Margolis, who is 58 now and a television producer living in Valley Village. By 1991, when the FDA approved an enzyme replacement therapy for Type I Gaucher Disease he was only in his 40s, but he was looking at a future that included hip replacements, spleen removal and a weakened skeleton.

“If I had gone on without treatment … I’d have been in pretty sad shape right now,” Margolis, said recently. “I hate to see other people go through the same process needlessly.”

Margolis is on a mission to make sure no one does. Inspired by the success of the early-1980s campaign to raise awareness of Tay-Sachs Disease, he formed the Jewish-Associated Disease Action Committee (JADAC) this spring. The organization’s mission: To raise awareness in the Jewish community of Gaucher and other Jewish-associated genetic diseases, and to make them household names.

The committee’s first strike came last spring, when Margolis, whose professional credits include the 1990s reality show, “Crusaders,” used his professional chops as a TV producer to make an informational DVD about Gaucher Disease called, “A Message to Elijah.” Narrated by Elliot Gould, the DVD introduces new Gaucher patients to three Los Angeles-area patients who are living active, full lives with the disease. It has already reached 7,000 people, Margolis said, and JADAC plans to produce such a DVD for every Jewish-associated genetic disease. They list 15 such diseases on their Web site (Two neighborhoods reveal Orthodox community’s fault lines

Sorrel Helps Liven Up Neglected Schav

"Mother used to leave jars full of schav in the refrigerator," says a friend of mine. "Because the stuff looked like seaweed, I would run from the kitchen in horror."

Schav, the khaki-colored soup once savored by Ashkenazi Jews, has fallen on hard times in recent decades. In a world where appearance is everything, foods of memory simply can’t compete. While a dwindling number of people recall this murky soup that was usually served cold and often at Shavuot, many curious souls, like myself, have yet to taste their first spoonful.

Made from milk or cream simmered with chopped sorrel leaves, schav is what I imagine the author Isaac Bashevis Singer ate at the dairy restaurants he frequented on Manhattan’s Upper West Side during a lifetime devoted to recapturing the lost world of Eastern European Jews through literature.

Growing wild in Northern Europe and North America, sorrel — which rhymes with moral — is an herb with green leaves shaped like shields that infuse a sharp lemony tang into food.

The Yiddish word for sorrel is schav. Because Ashkenazi Jews adored sorrel soup, schav became identified with the soup rather than the plant it’s made from.

"Pounce on sorrel when it’s available," says Barbara Kafka, author of "Soup: A Way of Life," who not only appreciates a good bowl of schav but also cultivates sorrel in her garden. Sharing a brief season with fiddlehead ferns, sorrel can be found at green grocers and gourmet markets during May and June. A harbinger of summer, this herb is in season only once a year, in late spring.

Falling seven weeks after Passover, Shavuot is a dairy holiday that commemorates Moses receiving the Torah and Ten Commandments. Although the exact reason for the holiday’s dairy connection is unknown, some scholars speculate that the whiteness of milk is a symbol of the Torah’s purity, while others claim that the Children of Israel abstained from meat on the day before they received the Torah. There is some evidence that when the Israelites returned from Sinai, they were too exhausted and hungry for the rigors of preparing meat.

Attracted to whatever scarce produce was available to them, Ashkenazi Jews may have chosen sorrel at Shavuot in deference to the holiday’s celebration of greens and first fruits. According to tradition, Mount Sinai was once a lush mountain covered by trees and shrubs, which contributed to the custom of decorating the synagogue with greenery for this holiday.

Because the Jews of Eastern Europe endured the harshest of winters and the blandest of diets — potatoes, gruel and black bread — they ached for tangy foods, such as sour pickles, borscht and, once the weather improved, a refreshing bowl of schav.

After they left the Old Country, many Ashkenazi Jews settled in New York, and later gravitated to bungalow colonies in the Catskill Mountains where sorrel grows wild on hillsides. Seeing this familiar herb, bubbes swung into action steeping cauldrons full of schav.

"Sorrel is a weed, a pest in the flower garden," says Kafka, explaining that the best schav is made from wild sorrel, which is smaller, tarter and lighter in color than cultivated French sorrel. While it grows, and even after it’s harvested, this herb is a splendid shade of green, but the color changes radically once it encounters heat.

"Sorrel turns a nasty mud color on the stove," says Kafka, claiming that its hideous hue doesn’t kill her appetite for it. "However if an aluminum pot is used, a really revolting mess occurs from the interaction between sorrel and pan."

To improve the color, she suggests adding spinach to the recipe. You can also puree a cup of sorrel leaves with 1 1/2 teaspoons of butter, a method Kafka credits to Patricia Wells, a doyenne of French cuisine. Ironically sorrel soup is a specialty of French chefs, too.

Listening to Kafka, I was intrigued by schav, although I admitted that I was reticent to taste it because my friend Sandy gave its seaweed color such bad press.

"Now that you’re both grown up, you should give schav a try," Kafka said. "It wouldn’t be such a terrible thing."

Although Sandy and I came of age in the 1960s, we came from opposite ends of the Jewish immigrant spectrum. She is the daughter of Czech Holocaust survivors. My great-grandparents immigrated here from Lithuania in 1888.

Sandy grew up in Brooklyn orbiting in a Jewish galaxy. I lived in Briarcliff Manor, an elite suburb north of Manhattan with a tiny Jewish population back then. She strove to be all-American; I was always yearning for roots.

Her mother continued cooking foods she had loved in her Czech village; my mother cared nothing about what our ancestors ate in Vilna. I’ve gotten glimpses of their lives from books such as Yaffa Eliach’s "There Once Was A World," a 900-year chronicle of a Lithuanian shtetl, which disappeared during the Holocaust with its inhabitants. I learned from John Cooper’s "Eat and Be Satisfied: A Social History of Jewish Food," that Lithuanian Jews shared a predilection for schav acquired from their neighbors.

Kafka’s suggestion to try schav convinced me to buy a bunch of sorrel when it floods the markets this Shavuot and to make a batch for my husband and daughter.

I hope the crisp white bowls I serve it in create an appealing contrast to its questionable color. Perhaps schav will be as good as advertised, or maybe we won’t care for the taste at all. No matter what, I can experience a piece of my heritage that has eluded me for a long time.

Sorrel Soup

Adapted from: "Soup: A Way of Life," by Barbara Kafka

3 tablespoons unsalted butter

1 cup tightly packed sorrel leaves, cut across into narrow strips

5 cups vegetable stock, homemade or commercially prepared

5 egg yolks

1 1/2 cups heavy cream

kosher salt to taste

In a medium saucepan, melt the butter over medium heat. Add the sorrel and cook for two minutes, or until it has wilted.

Add the stock and bring to a boil. Lower the heat and simmer, uncovered, for 20 minutes.

Beat the egg yolks and cream together in a small bowl. Slowly ladle in some of the hot soup whisking constantly, until you have added about one-third of the soup and raised the temperature of the egg yolks.

Now, while whisking the soup, slowly pour in the egg yolk mixture. Slowly bring to a boil, whisking constantly, to thicken. Season with salt.

Remove from the heat and continue whisking as the soup cools. Refrigerate covered, and whisk the soup occasionally until it is fully chilled to ensure proper consistency; adjust seasoning to taste.

Makes six cups; six first-course servings

Potato Salad

Potato Salad:

2 pounds small red-skinned potatoes

5 carrots, cleaned & diced

5 celery stalks, cleaned & diced

1 tablespoon chopped fresh chives

1 teaspoon chopped fresh dill

1 bunch sorrel, rinsed


3/4 cup mayonnaise

1/3 cup buttermilk

4 tablespoons spicy brown mustard

1 tablespoon lemon juice

2 teaspoons white wine vinegar

Salt & white pepper to taste

Thoroughly whisk dressing ingredients in a bowl. Reserve.

Boil potatoes in a large pot of water until tender, about five minutes. Drain well in a colander and cool to room temperature. Cut into quarters, leaving skin on.

Transfer potatoes to a large bowl and pour dressing over them. Mince six sorrel leaves and sprinkle in. Gently stir with a spoon, mixing well.

Cover and refrigerate. Can be made a day in advance. (Sorrel leaves will darken.)

To serve, place salad in an attractive bowl and garnish by crisscrossing several sorrel leaves in the center.

Sorrel can also be used to spice up your favorite recipes:


It Takes a Village Glen

It’s break time in a sixth-grade classroom at Village Glen School in Sherman Oaks. Two boys play chess with an air of serious concentration, ignoring a small group of 12-year-olds talking and joking nearby. A handsome boy with golden hair and freckles breaks away from the group, playfully shoves another boy’s shoulder and then pretends to run away in terror; the other student briefly gives chase. It looks like any typical classroom except that all the children here have been diagnosed with autism.

A neurological disorder marked by an inability to connect with other people, autism is increasingly a concern to Jewish families. While researchers and professionals continue their debate over whether the incidence is higher in the Jewish community, several new studies are underway to prove or disprove the theory.

For Jewish families like Greg and Andi Miller, schools like Village Glen are a godsend. Their 13-year-old son, Randy, had struggled to get along in a public elementary school, where he was a source of frustration for his teachers and an object for ridicule to his peers. At one point, Greg Miller recalled, Randy was shoved onto the ground so hard by another student that he had to be strapped to a body board and taken to the hospital. After several years of fighting with Las Virgenes Unified School District over tuition funding, the Millers were finally able to enroll their son in Village Glen.

Opened in 1995, Village Glen combines social skills groups, behavioral and speech therapy along with academic support for 350 children, a proportionately high number of which are Jewish.

Village Glen is just one part of a miniature school system run by The Help Group. Altogether, the organization operates five programs with campuses in the Valley and Culver City, serving more than 850 children. Each program is aimed at a specific population, from the learning disabled to children like Randy, who has a mild form of autism called Asperger’s Syndrome; it is high functioning cases like these which are the fastest growing segment of the autism population.

While children with classic autism make little or no eye contact, isolate themselves, resist touch and are often obsessed with routines, children on the higher-functioning end of the spectrum may be intelligent — even gifted in certain areas — but miss commonly understood social cues.

"We used to think this was a really bad disease, kids flapping their hands and throwing tantrums," said Dr. Edward Ritvo, professor emeritus of psychology at UCLA and a consultant with The Help Group, who saw his first autistic patient in 1953. But today it’s more prevalent, he said. Ritvo does not believe the Jewish community suffers a higher rate of the syndrome than the general population.

"We used to think autism was found only in certain areas or populations, but subsequently we found it everywhere: in Asia, in Africa, in blacks and whites, in rich and poor, in Jews and Mormons," Ritvo said.

But his wife and colleague, Riva Ritvo, notes that there may indeed be an increase among Ashkenazi Jews, owing to a genetic component now being examined at Stanford University.

Researchers are finding "clusters" in the Jewish community, she said. "The theory behind it is, in the ‘true’ Jewish community there were a lot of marriages of genetic cousins — third cousins, second cousins — so we know that, for example in families where there are multiple children affected, we have genetic cases."

Barbara Firestone, president and CEO of The Help Group said: "So many parents have the experience where they suspect that their child has a special need, the child is identified as such and then what? Then they go through this whole maze. Here we have the full range of those services and when parents come here, we can tailor a program for their child."

Greg Miller is happy about the switch. "Randy is in heaven. He loves going to school, he loves his teachers," he said. "The relationships the school works on between him and his peers is so well-supervised. It is the laboratory where he is learning to be socially appropriate."

Professionals stressed that almost all children with autism can be helped.

Greg Miller is grateful that there is a resource like Village Glen. He recalled an argument he had with a resistant Las Virgenes Unified administrator.

"I told him that he had a choice. He could be driving down the street 20 years from now and see my son striding down the sidewalk, happy and living life, or he could see Randy sitting on a curb, begging," Miller said. "If it wasn’t for the Help Group, Randy would be completely out in the cold."

The Help Group hosts several conferences and lectures throughout the year on autism as well as other disabilities like attention deficit disorder. Their next lecture series will be held from 9 a.m. to 1 p.m. on Wed., Nov. 20 and Fri., Nov. 22. For more information, call (818) 779-5212.

A Decrease in Vigilance

A conference on genetic diseases held by the Cultural Foundation of Habib Levy in November led The Journal to examine the Jewish community’s reduced state of awareness about genetic testing for prospective parents. During the past 30 years, large-scale genetic screening of Ashkenazi Jews in the U.S., Israel and other countries has reduced the number of babies born with Tay-Sachs, the most widely known Jewish genetic disease, by 90 percent. Yet today, younger Jews are less conscious of Tay-Sachs and even less aware of testing made available during the past five years for a newer array of genetic diseases. Geneticists and physicians confirmed that many people are not adequately informed about their genetic testing options. Regardless of their educational background, few individuals know if they fall into a high-risk category for genetically transmitted diseases. Experts interviewed maintain there has been a relaxation in vigilance about carrier screening and a consequential rise in danger signals for American Jews of Ashkenazi descent.

Dr. Dana Eisenman, a general internist with the Health Source Medical Group who spoke at the November conference, outlined some of the major genetic diseases that Jews need to be tested for: Tay-Sachs, Niemann-Pick, Gaucher, Canavan and cystic fibrosis. “Gaucher is the most common genetic disease in Jews,” he said, “but it is less well-known than Tay-Sachs. Unlike Tay-Sachs, symptoms such as anemia, bone pain and fractures don’t often show up until adulthood. For this disease there is replacement enzyme available that reverses many of these symptoms.”

Cystic fibrosis causes mucus to build up in the bronchial tubes and the digestive system to fail to absorb nutrients. “In Ashkenazi Jews,” Eiseman explained, “the carrier rate is one-in-40. As with the other genetic diseases, there is a 25 percent chance of a baby having the disease. Malnutrition and lung failure usually lead to death by the age of 30.”

Tay-Sachs and Niemann-Pick, both caused by enzyme deficiencies, result in progressive brain damage and mental retardation from infancy, with death usually occurring in early childhood. Some variants of Niemann-Pick, which causes enlargement of the liver and spleen, turn up in older children, and one type does not affect the brain.

Unless there is a family history of one of these diseases, the issue of carrier genetic testing usually arises with a decision to have children. Until recently, the only commonly available tests were Tay-Sachs for Jews and sickle cell trait screening for African Americans. Eisenman stressed that today carrier genetic testing is available for all of these diseases.

“Each cell in our body has two sets of genes,” he explained, “one set inherited from our mother, one set from our father. In most cases, only one normal gene of a pair is necessary for a cell to function normally. And so if a person has one defective Tay-Sachs gene from his mother but a normal gene from his father — one bad gene, one good gene — he will not have the disease. Now if the woman is also a carrier, each of the children of this couple has a one in four chance of having the disease.

“Through carrier genetic testing, the prospective parents can identify high risk pregnancies and then decide what to do,” Eisenman said. “Any couple should avail themselves of all the tests for these rare diseases that could affect the fetus. Most insurance plans will cover these, if you’re persistent about it.”

Later, in a follow-up interview, Eisenman said that “it’s really the diseases other than Tay-Sachs that are being ignored. I believe they should all be tested, even though the risk is maybe one in a thousand. If the mother is tested and she’s negative, then it really doesn’t matter what the father is.

“Probably the biggest threat to health resources is cystic fibrosis,” he added. “One couple came from a family of doctors, but weren’t aware of it and didn’t test for it. One in every thirty white people carry the gene of cystic fibrosis. So that is probably the most important one to be tested.”

“There’s a decreased vigilance in the Jewish community even regarding Tay-Sachs,” said Dr. Judith Tsipis, professor of biology and director of the genetic counseling program at Brandeis University. “I think that one in 25 Ashkenazi Jewish individuals are carriers of Tay-Sachs. In the late l960s, they developed a biochemical test to find out if someone was a carrier or not, and that enabled couples to make informed reproductive decisions. At that time a lot of people knew families who had children with the disease; it was very much on people’s minds.

“What has happened is that the program has been spectacularly successful,” Tsipis continued. “But the next generation no longer has that sensitivity to the issue, and they’re still genetically at risk. College students, young couples getting married, rabbis counseling couples are not mentioning the possibility of carrier testing the way they used to. And that’s a pretty disturbing trend. I certainly know of several couples who were not informed and who had children with Tay-Sachs recently.”

Screening for Canavan disease — also known as spongy degeneration of the brain — is now urgently recommended, Tsipis stressed. “Whenever Tay-Sachs is discussed, Canavan should be discussed,” she said. Canavan strikes one in 6,400 children, and there are only about 200 children in the U.S. with the disease. But once a child inherits two copies of the Canavan gene, the child’s brain inexorably deteriorates, wiping out thinking, feeling, emotions, vision and muscle control. As the disease progresses, it causes seizures, severe feeding problems, retardation and blindness. Most children die between ages 10 and 15.

Tsipis — whose son died of Canavan disease in 1998 — explained the real story is the overall lowered awareness in the Jewish community: “You don’t need to have a family history in order to be a carrier and at risk. People say, ‘Gee, I don’t need to be tested. I have no relatives with Tay-Sachs.’ But that’s not the way recessive inheritance works. It’s two families coming together.”

Dr. Ellen Knell, a geneticist at the conference who specializes in cancer risk assessment, underscored the concerns of Tsipis. “An awful lot of the young people who are of child-bearing age do not even know about Tay-Sachs,” Knell told The Journal. “When the screening program was new, everybody got screened and everyone knew about it. But when have you last heard about it? ”

Knell also pointed to the need to test for all of the five major diseases.

“The bottom line is that these diseases still happen,” she said. “The carrier rate for Tay-Sachs is the same as it has always been, and there are about eight things one can do to not have a Tay-Sachs baby. The same applies to the other diseases as well. Depending on how religious you are, you can choose prenatal detection, with the option of aborting an affected child, because three-fourths will be normal. You can choose to have a donor sperm, artificial insemination from an unknown nonspouse. If you are very religious and are against these procedures, you can be anonymously tested and be introduced to someone who is not carrying the same mutations you might have. So there’s a range of options. The important thing to me is that if you’re unaware of all this and don’t have any testing at all, you may have an unpleasant outcome that you were not aware could occur.

“Look,” Dr. Knell said. “The only two ways that you find out if you’re a carrier of an abnormal gene is one, to be tested or two, to have a child with that disease. Most people would choose not to bear and give birth to a baby that’s going to die in three to five years. This is not past history. This is something that still needs to be dealt with. People are still getting these diseases.”

For information about support groups related to genetic diseases:

National Tay-Sachs & Allied Diseases
Association, Inc.

2001 Beacon St.,
Suite 204
Brighton, MA 02135
(800) 906-8723
(617) 277-4463

National Society of Genetic

233 Canterbury Drive
PA 19086
(610) 872-7608

National Foundation for Jewish Genetic

250 Park Ave.
New York,
NY 100ll

National Niemann-Pick Disease

3734 East Olive Ave.
Gilbert, AZ 85234
(920) 563-8677
(877) 287-3672

Autism: The New Epidemic

Barbara and Sheldon Helfing never
expected to have one autistic child, much
less two. Their son Leland, now 5, was born
prematurely and began showing signs of a
neurological disorder before reaching his
1st birthday.

“Leland had very poor balance and he
wasn’t yet responding to us with words or
gestures,” Barbara said. “But initially autism
did not come up because he was clearly
interested in his surroundings and in other

Leland began getting help through the
state’s Early Intervention Program. However,
since the state agency did not require a
diagnosis prior to providing services, the
Helfings had no idea that their son’s
problem might be genetic. When Nathan
was born, the Helfings rejoiced in their
healthy new son, but by the time he was 18
months old, the heartbroken parents could
no longer hide from the fact that their
younger son had also fallen prey to the

The Helfings are part of a growing trend that
is affecting the Jewish community in
unprecedented numbers. The statistics
most often quoted in past reports about
autism state that autism spectrum disorders
occur in four to five in every 10,000 births.
However, according to the Autism Society
of Los Angeles, a soon-to-be-released
report on children in the state of California
shows a 400 percent increase between
1986 and 1996 — or one in every 500 births.

In terms of the Jewish community, a study
being performed at Stanford University’s
School of Medicine is looking into how
families of Ashkenazi origin are affected
(see box). Researchers stress that so far
there is no indication that Ashkenazi Jews
have more of a tendency toward autism than
the general population. However,
professionals who work with autistic children
say the overall increase in cases has had a
definite impact on Jewish families.

“While I would not say the Jewish community
is any more hard hit than other communities,
we are certainly seeing plenty of Jewish
families with this problem,” said Dr. John
Lutzker, chair of the department of
Psychology and director of graduate training
at the University of Judaism in Los Angeles.
“I have contact with the (state-run) Regional
Centers and with the school districts and
they cannot put a lid on this. It is indeed an

Dr. Sandra Kaler, a psychologist
associated with the Neuropsychiatric Unit at
UCLA, agrees.

“The Jewish community has been equally
struck by this and I think there was an
assumption we would not be,” Kaler said.
“Now when I go out to a Jewish preschool to
do an evaluation, I frequently see one or two
children with autism, where before it was
very rare to see more than one.”

Autism is a neurological disorder that
typically appears during the first three years
of life and includes disabilities or delays in
the areas of social skills, communication
and cognitive development. Children can
either be born with the disorder or develop
normally and then regress, usually between
the ages of 18 and 24 months. It occurs four
times more often in boys than in girls (one
reason why scientists suspect a genetic
link). About 70 percent of children with the
disorder also show some degree of mental
retardation. Autism is considered a lifelong
disability, but with early intervention many
children learn enough skills to lead
independent lives.

No one knows for sure what has caused the
skyrocketing numbers of children diagnosed
with autism. Because of the gender bias
and because so many families have more
than one child with the disorder, several
ongoing studies are focusing on the
existence of a genetic link or mutation.
Other scientists are examining
environmental factors like diet, vaccinations
and pesticide exposure.

Part of the rise in incidence may be
attributed to a change in the definition of
autism spectrum disorders. For many years
it was easy to tell children who fit the classic
diagnosis of autism: An inability to relate to
others, poor or no speech, violent or
self-injurious behavior, repetitive or
seemingly meaningless activities. However,
the diagnosis has evolved to include
children who relate fairly well socially but
who have delays in other areas like
language or fine motor skills. (This is
sometimes called pervasive developmental
delay, not otherwise specified or
PDD-NOS.) On the other end of the
spectrum are children who have solid
communication skills but find it difficult to
relate to other people, sometimes
becoming obsessed with a narrow range of
ideas or objects, a disorder known as
Aspergers Syndrome.

But Lutzker said the change in evaluations
cannot completely explain what
professionals are seeing in their offices.

“It’s an interesting dilemma: Is it that we are
more aware of autism or are there truly
more incidents? I’m inclined to lean toward
more incidents just because of the endless
number of children we are seeing these
days,” he said.

Lutzker, a behavioral psychologist, is a
strong advocate of the discrete trial training
method of treating children with autism.
Discrete trial training (also called applied
behavior analysis or ABA), was designed
by Dr. Ivar Lovaas of UCLA in the 1960s
and uses behavior modification with both
positive and negative reinforcement to
shape the child’s response. Other
developmental professionals prefer using
the newer “floor time” therapy. Created by
Dr. Stanley Greenspan, a psychiatrist at
George Washington University Medical
School, this teaching method is
child-directed — the therapist follows the
child’s lead in playing games and
performing activities that enhance the child’s
communication skills. Many autistic children
also receive speech and occupational

Working out a successful treatment plan is
one of the many battles that parents such as
the Helfings find overwhelming at times.
Both their boys have different strengths and
weaknesses and each requires a program
that supports their needs. Therapy, including
a home-based ABA program for Nathan
and Greenspan sessions for both, often
takes up eight or more hours a day for each
child. Ironically, both Barbara and Sheldon’s
professional training makes them
well-suited to the task of raising children
with special needs; Barbara has a Master’s
degree in education (including a credential
in special ed) and Sheldon teaches
psychology at local community colleges.

Barbara said the hardest part is dealing
with family and friends who don’t seem to
grasp what life with autism is all about, the
constant toll taken on the family’s time and
emotions and finances as they research
every option for helping their sons. She tells
the story of a friend who called up in tears
because her daughter had missed out on
getting into a gifted class by two points on a
test. Barbara said it was hard not to laugh
because “I wish for one moment that Leland
or Nathan had a problem like that!”

“What it comes down to is our kids are in a
perpetual toddlerhood,” she said. “Their
mental age is not where their chronological
age is; that’s what makes it more taxing for
us as parents. Other parents spend a lot of
time talking about their kids’
accomplishments and what we talk about
may not seem like much. But the things
other people take for granted, we really

The family has struggled to find their place
in the Jewish community. Currently they are
not affiliated with any synagogue. Barbara
said when Leland was a toddler she joined
a Mommy & Me class at a large
Conservative temple, but was disheartened
by the response of other mothers when
Leland finally attempted to speak.

“He was vocalizing, making these sounds
that weren’t quite words, but it was the first
time he had even tried to talk,” Barbara
said. “And I saw two mothers pull their
children away from him, like it was
contagious. Instead of applauding that this
child was finally speaking, they reacted like
he had a disease.”

To add insult to injury, when Barbara called
to tell the teacher she and Leland were
leaving the class, the teacher asked if she
could tell the other mothers that Leland was
a special-needs child unsuited to the
program. Barbara said the feeling she got
from the experience was that children who
were different posed a threat to the
reputation of the highly touted,
“academically enriched” program. The
rejection, she said, still hurts.

Sheldon is quick to point out that not all the
family’s experiences with synagogues have
been negative.

“There are some good programs out there,”
he said. “But the general population reacts
from fear — what you don’t know might hurt
you. The misnomer about autistic kids is
that they’re crazed and violent, when in fact
they are so locked inside themselves they
would not hurt anyone.”

Dr. Bryna Siegel, author of “The World of
the Autistic Child,” has seen many Jewish
parents during her tenure at both Stanford
and the University of California at San
Francisco. Siegel, who is Jewish, said the
emphasis on education and the high
expectations of parents and grandparents in
our culture makes it more difficult to accept
a diagnosis of autism.

“The problems Jewish families have in
coping with autism is by and large what I
see in most well-educated, upper
middle-class families,” Siegel said. “There
is a much greater sense of disappointment
in having a child with a disability as
opposed to a working-class family. And
there isn’t as much room in the Jewish
community for these children as, say, in the
Mormon community where they are seen as
a chance for family members to grow
spiritually through love and compassion.
Judaism really doesn’t have an outlook like

Siegel said that in some cultures where
large families predominate, having a
special needs child is less of a burden
because the work can be shared among
more people.

“But except for the Chassidim, Jewish
families are not having a lot of kids. For
those families, this child may be their only
one, and that can be hard,” she said.

The Los Angeles Jewish community has
been slow to respond to the recent surge of
families with developmentally delayed
children. Few programs exist to teach these
children Jewish culture and values. In the
San Fernando Valley, there are special
needs programs at Valley Beth Shalom,
Temple Judea and Kol Tikvah, but except
for VBS, these programs are limited to a
few hours one or two mornings a week. The
standards of admission for Jewish day
schools such as Abraham Joshua Heschel,
automatically eliminate many children with
disabilities, including autism. Other schools
will only take an autistic child if a one-to-one
aide is provided, which may be out of the
financial range for parents already pushed
to the limit by medical treatments.

The University of Judaism, however, recently
established a Master’s degree program for
people interested in working with autistic
and abused children, which will put more
knowledgeable, appropriately trained
teachers out in the Jewish community. For
those already in the field, the Bureau of
Jewish Education, at its recent Early
Childhood Education conference, hosted a
seminar on Autism and Aspergers for
educators along with several classes on
evaluating children for speech and language

But the Helfings’ best advice to other
parents of autistic children is this:

“Know your child, their strengths and
weaknesses,” said Barbara. “Know the law,
or hire someone who does. The truth is, in a
situation like this the playing field is not
even. To the degree you’re informed about
your child, the disorder, what resources are
available and about your rights is the
degree to which you will be able to help your
child succeed.”


I’m not mental. Really. I’m not manic-depressive,hypomanic, borderline schizophrenic or psychotic. I don’t hear voicesor imagine I’m being followed by Marie Osmond. I don’t have tics or acompulsive need to wash my hands or avoid cracks in thesidewalk.

Like a lot of people, I could just use someone totalk to. That’s all. I figure it can’t hurt.

After all, my family is like a Who’s Who of mentalillness.

When I read about a study that indicated thatAshkenazi Jews have a higher incidence of depression, I wasn’tsurprised. Relatives on both sides of my family have spent short andlong stays at various mental institutions. “Grandma had to go awayfor a coupleof weeks,” and “sometimes Grandpa doesn’t like to get outof bed,” and “there’s the mental hospital your Uncle Marty was in,”are things I heard while growing up.

So far, save a few bouts of garden-varietymelancholia, I seem all right. But with genetics like mine, you can’tbe too careful. That’s why I’m on the hunt for a goodmental-health-care professional.

Since relocating to Los Angeles, I’ve had notrouble finding a hairdresser, a reliable dry cleaner and a woman whoadministers an almost painless bikini wax. After just about a year ofliving here, it finally seems time to track down someone who willgladly listen to my problems for money.

But how?

In my mind, I picture a sort of therapist datinggame. I line them up and toss off a series of questions: TherapistNo. 1, if you were a vegetable, what would you be? Therapist No. 2,if I were to have a nervous breakdown at 3 a.m. and call you at yourhome, what would you do? Therapist No. 3, if I were to use humor inthe course of discussing my life, would you laugh? Or would you juststare blankly and ask why I feel the need to joke?

I’ve heard that getting a referral is the way togo, but from whom? It’s not the kind of question you want to ask justanyone. I’ve gingerly approached the subject with a fewacquaintances. Sometimes, people hand over the name of a trustedtherapist without flinching. Other times, I can just see themthinking, “I had no idea Teresa was mental.”

I’m a little leery about referral agencies eversince my experience with 1-800-DENTIST. I called, asking for afriendly, experienced dentist in my area and ended up with a palsiedoctogenarian whose 1950s dental machine was dinette-table yellow andprobably about as sterile as a deli counter in Kabul.

I go see “Beth,” the therapist of a friend ofmine. Beth’s office is conveniently located and her building has freeparking, so I’m really hoping for the best.

I don’t want to say she wasn’t nurturing, but itwas like talking to the Great Santini in a flowing pants suit.

“Are you always this nervous?”

“No. Only when I’m about to have my head shrunk tothe size of a pea by a woman with the demeanor of a drillsergeant.”

Well, that’s what I said to myself. What I said toher was, “Do I seem nervous?” Perhaps I was thinking about the checkI was going to have to write. She informs me that I need “deep” work.I think she means deep into my pockets. She assures me that many ofher “industry” clients become outrageously successful under hertherapeutic tutelage, and I am enticed by her self-proclaimed Midastouch. Still, I doubt she is “the one.”

Lots of counselors and counseling services don’teven return my calls. I’m feeling rejected. The whole process makesme needy and insecure, the very qualities I’m trying toameliorate.

I press on. I’ve got people asking people to askpeople for their people. It won’t be long before that perfecttherapist, sort of a cross between Barbra Streisand in “Prince ofTides” and Judd Hirsch in “Ordinary People” comes along.

Those feelers are out there. Just last night I gota call from a perspective therapist.

“So, why are you seeking therapy?”

“Oh, you know, the usual stuff, who am I? What amI going to be? What’s it all about? Why is Marie Osmond followingme?”


“Just a joke.”

“Why do you feel the need to joke?”

And the search continues.

It won’t be long before that perfect therapist,sort of a cross between Barbra Streisand in “Prince of Tides” andJudd Hirsch in “Ordinary People” comes along. Above, Barbra Streisandas she appeared in “The Prince of Tides.”

Teresa Strasser is a twentysomethingcontributing writer for The Jewish Journal.