Los Angeles: Galeet Dardashti, May 16

Tracing the Tribe is delighted to announce that our cousin Galeet Dardashti will receive a special award on Sunday, May 16, in Los Angeles.

The event, sponsored by the Iranian Jewish Women’s Organization will be held at the Beverly Hills Hotel.

I wish it were a few weeks later so that I could attend this wonderful event.

The objective of this organization, in addition to its social, cultural and charitable activities has been to protect the dual identity of the Iranian Jewish community in Los Angeles, as well as to recognize the impact and role of Iranian Jewish women in society.

The Shamsi Hekmat Achievement Award will be given to three outstanding Iranian Jewish women: Azadeh Farin, MD, neurosurgeon; Mojgan Rahbar, journalist, editor and anchorwoman; and Galeet Dardashti, PhD, vocalist and composer.

Galeet Dardashti is the first woman to continue her family’s tradition of distinguished Persian and Jewish musicianship. She leads Divahn—a renowned all-female power-house ensemble that performs edgy interpretations of Middle Eastern Jewish music internationally. She received a Six Points Fellowship and a Hadassah-Brandeis Institute Fellowship to pursue her independent project “The Naming”, a multi-disciplinary (original music, dance, video art, monologues) work performed in Hebrew, Persian, Arabic, and Aramaic that re-imagines some of the compelling women of the Bible.

Galeet holds a PhD in anthropology and completed her dissertation on the cultural politics of contemporary Middle Eastern music in Israel in 2009. Her work was supported by fellowships from Fulbright-Hays, The National Foundation for Jewish Culture, The Memorial Foundation for Jewish Culture, among others. She has published her academic work widely and offers lectures and artist/scholar-in-residencies throughout the country. She lives in New York with her husband and son.

Azadeh Farin is currently chief resident and clinical instructor of neurosurgery at the Department of Neurosurgery, Keck School of Medicine, LA County-USC Medical Center. She is one of fewer than 200 female neurosurgeons in the US, less than 4% of all US neurosurgeons.

Among her numerous accomplishments are dozens of publications, including first-author publications, several of which have been featured on the covers of the most prestigious peer-reviewed journals in her field.

Azadeh has served as a consultant for the hit ABC television drama, Grey’s Anatomy.

Mojgan Moghadam Rahbar is a journalist, writer, translator and humanitarian who has worked in the Iranian and American media for the past 20 years. Currently editor-in-chief of Shofar Magazine, the quarterly publication of the Iranian American Jewish Federation’s quarterly publication, she lives in Los Angeles with her husband and children.

Congratulations to the three honorees.

New Resource: SCIRUS finds people!

Are there academics or scientists in your family? Would you like to know? Do you want to cast a wider family search net? Here’s a new resource to help you.

SCIRUS.com is considered the most comprehensive science-specific search engine on the Internet, it searches more than 380 million science-specific Web pages. Researchers can pinpoint scientific, scholarly, technical and medical data; find the newest reports, articles, patents, journals, websites, homepages, courseware and repository information that other search engines might miss; and help scientists and researchers.

Importantly, it is also great for genealogists and family researchers looking to cast a wider net.

My search centered on our TALALAY and DARDASHTI families, and I was very pleased with the results.

There are quite a few academics and scientists in our TALALAY family, and this search engine found them. From Dr. Paul Talalay of Johns Hopkins Medical School, to Dr. Mikhail Talalai (a Russian historian who lives in Italy), Dr. Pavel Talalai (Misha’s brother in Saint Petersburg, a specialist in deep-sea ice), Dr. Alexander Talalai (communications) and many others, including Dr. Boris Talalai (originally of Saint Petersburg, now Beersheva University). Paul’s daughter Rachel, a film/documentary producer, even got a mention.

Results: For TALALAY, there were 9,835 hits;  for TALALAI, 58 hits (this is the Russian spelling and also for a family of Polish Catholics in New Jersey and elsewhere). There were even 261 hits for TALALLA (sometimes the Spanish spelling as LL=LY, which can also be Talalya). A search for TALALAJ (a variant Polish spelling) produced 274 hits for people in Poland, the US and elsewhere. TALLALAY produced 13 hits, seemingly with TALALAY misspelled (I knew the people referred to, such as cousin Paul).

Our DARDASHTI family is also well-represented: Cardiologists Drs. Iraj Dardashti and Omid Dardashti; musician/anthropologist Dr. Galeet Dardashti; some in Iran (although I have no way of figuring out how they might be related at this point in time); some in Germany, Sweden, Norway; Dr. Kambiz Dardashti, our Philadelphia cousin Ephi Dardashti, and more. Tracing the Tribe even got a mention on a posting on the Sephardi Studies Caucus. There were 1,055 hits, with just one for DARDASHTY (a variant rare spelling).

Areas represented cover medicine, research, patents, culture, technology, anthropology and much more. It is well worth a visit and a search, particularly if you are dealing with an uncommon name.

Tracing the Tribe is not sure if a search for COHEN will turn up useful information for a particular family. Non-family names, such as my old New York pediatrician, Isaac Newton Kugelmass – who was in his 90s when I last knew him – got six mentions.

It is so successful at locating these types of results that it was voted Best Specialty Search Engine (2001. 2002) and Best Director or Search Engine Website (2004-2007).

And, since Tracing the Tribe often brings readers more than esoteric bits of information, here’s the background on how the organizers selected the name SCIRUS:

“To the Eleusinians who were warring against Erechtheus, came a man, Scirus by name, who was a seer from Dodona, and who also established at Phalerum the ancient temple of Athena Sciras. After he had fallen in the battle, the Eleusinians buried him near a winter-flowing river and the name of the region and the river is from that of the hero.”

We chose the name Scirus because seers and prophets are said to judge the signs of what is to come. And science is a visionary discipline in which you are continuously working on new ideas and developments. The Scirus search engine will pro-actively support your role as a seer.

*Excerpt from “The Description of Greece” by Pausanias, translated by August A. Imholtz, Jr., CIS Executive Editor

Check it out and see if Scirus can help you. See what you can find.

Genetic testing: Affordable vs future research

In the wake of a Federal court’s ruling last week against a Utah company holding patents for BRCA1 and BRCA2, Tracing the Tribe has some questions.

On the plus side, Tracing the Tribe believes that companies now wishing to provide lower-cost, more affordable, genetic testing will be able to do so – eventually – although legal experts believe the case will land in the Supreme Court.

Note that Tracing the Tribe is not talking DNA genetic genealogy testing, but rather testing for specific genetic conditions/diseases. The questions are relevant because some patent holders charge high fees for those tests, restricting affordable access to those who may want or need those tests.

Please chime in here, dear readers:

(1) Should genetic testing for specific conditions/diseases be made more affordable and accessible, e.g. low-cost, to everyone?

(2) Should high fees be demanded of those wishing to test – to provide financing for research on those conditions.

(3) Who owns your DNA? (according to this case, it isn’t the DNA patent-holder).

(4) Because this is a Jewish genealogy blog, Tracing the Tribe is well aware that when Tay-Sachs testing (a tragic, nearly fatal by age 3, neurological disease) went worldwide, the incidence of its occurrence dropped by some 98%. This was due to widespread, affordable, accessible testing across the Jewish world. There are many other genetic diseases impacting mostly those of Jewish heritage. Shouldn’t those families have affordable access to lower-cost testing?

According to paper, the DNA industry is waiting to hear the reaction to the ruling .

Scientists and health advocates sued Utah-based Myriad Genetics, which held patents for two genes, BRCA-1 and BRCA-2, linked to breast and ovarian cancers. The groups alleged that the patents were improper because the DNA was a natural substance in the human body. The federal judge sided with the plaintiffs, invalidating parts of the patents.

Ken Alltucker’s article says that researchers and companies are interested because the ruling could impact many other genes.

The ruling is critical because an estimated 20 percent of human genes have been patented. Companies launched based on those patents, with investors betting that companies could profitably develop drugs or devices targeting an individual’s unique DNA.

But critics argue that such patents stymie research. Scientists often are required to get permission from the gene patent holders before using the information for research. Some companies even charge fees to use them.

The story quoted Arizona BioIndustry Association president Robert Green:

“The key in biotechnology is you have to raise a lot of money to get to the cure and get to the product. You can only raise that money if investors know you have some patent protection. If you don’t have that, there is no incentive for people to invest in these risky technologies.”

Some 20% of human genes have been patented, according to the story. Investors betted that companies could develop drugs or devices based on a unique DNA.

DNA: Disease analysis or genealogy?

According to a New York Times article, analyzing DNA for disease risk isn’t as popular as its providers thought it might be.

There’s a big difference between those consumer segments who participate in genetic genealogy testing rather than disease analysis.

Andrew Pollack’s story focused on 23&Me but also mentioned Navigenics and DeCode Genetics, in the article which discussed the lack of paying customers and small numbers of paying customers.

Connected to Google by both love and money, 23andMe seems the epitome of a 21st-century company — a cutting-edge merging of biotechnology and the Internet, with a dash of celebrity thrown in.

The scarce ingredient so far is customers.

23&Me is the most prominent, founded in 2007 by the wife (Anne Wojcicki) of Google’s cofounder Sergey Brin. It launched with celebrity “spit parties” to market personal genomics services. Individuals’ DNA is scanned and promises to provide the risks for developing many diseases.

However, 23&Me has gone through two series of layoffs (from 70 to 40 employees). According to the story, it has only 35,000 customers and about 25% were tested for free or $25. Normally the teats run from $300-2,000. The other two companies mentioned have even fewer customer.

Professional geneticists call it a “wonderful form of recreation,” but that its practical value is “premature.”

On its third CEO in a year, Navigenics has had layoffs and now sells to doctors and corporate wellness programs instead of the public. Insiders say there are only about 20,000 customers, and 5,000 received large discounts to participate.

DeCode Genetics only attracted fewer than 10,000 customers to its personal genomics service, and went through bankruptcy.

Read the complete story at the link above for more.

Genetics: Joubert Syndrome gene discovered

A genetic mutation causing Ashkenazi Jewish children to be born with Joubert Syndrome – a neurological genetic disease – was discovered by Hadassah University Medical Center in Jerusalem and Dor Yeshorim (Committee for the Prevention of Jewish Genetic Diseases) researchers.

The finding will be published in the American Journal of Human Genetics (January 2010 edition), and the announcement appeared in the Southern California Hadassah Blog.

Hadassah’s Department of Genetics and Metabolic Diseases has, in the past two years, discovered 13 genes – including this newest one – whose mutations may cause genetic diseases in children.

Joubert Syndrome affects the cerebellum, which is responsible for controlling balance and coordination of skeletal muscles. Infants born with this condition demonstrate decreased muscle tone, difficulty in swallowing, jerky eye movements and an inability to coordinate voluntary muscle movements. As the children grow, they may suffer from mental retardation and develop kidney failure.

According to the article, Dor Yeshorim was concerned with an increasing number of children born with the syndrome in recent years, and asked Hadassah to investigate.

Analysis of the children’s DNA showed each had an identical 14-gene segment. Research identified the one with the mutation that causes the syndrome.

Based on these initial findings, researchers examined the DNA of 3,000 healthy Ashkenazi Jews and discovered that one out of 92 Ashkenazi Jews carried the mutation. This means that one of every 8,000 Ashkenazi Jewish couples may have a child with Joubert Syndrome.

NOTE: Tracing the Tribe wonders about the genetic genealogy matches of the test group. In the past, several studies have initially pointed to “Ashkenazi” conditions, later adjusted to simply “Jewish” genetic conditions, when the same conditions were found among Sephardim. A recent example (2006) was Yeshiva University’s study on the discovery of an “Ashkenazi” Parkinson’s gene. The definition was amended a few years later when the same gene was found among Sephardim. How many of these Joubert Syndrome test subjects may have a Sephardic oral history or other markers?

The Hadassah researchers included Dr. Simon Edwardson, Dr. Avraham Shaag, Dr. Shamir Zenvirt, and Prof. Orly El-Peleg, with the participation of Dor Yeshorim.

For more information on Hadassah’s health and medicine activities, click here.

Miami: Hispanic incidence of breast cancer

Tracing the Tribe frequently covers issues relating to Sephardim and Conversos, including the incidence of so-called “Ashkenazi” breast cancer (BRCA1 and BRCA2) in Hispanics.

On Friday, CBS TV-4 in Miami, Florida reported that research shows breast cancer is high in Hispanics:

Doctors have known for years that BRCA 1 and BRCA 2 mutations are more common among Ashkenazi Jews. But a new study in the Journal of the American Medical Association found there are also a higher percentage of BRCA 1 mutations in Hispanics. BRCA 1 mutations appear in 8.3 percent of Ashkenzai Jewish, 3.5 percent of Hispanic patients and 2.2 percent of non-Ashkenzai, non-Hispanic patients.

These types, of course, are not exclusively Ashkenazi, but merely Jewish, and date from before the Jewish world split into Sephardim and Ashkenazim. ManyHispanics are descendants (whether they know it or not) of Conversos – those forced to convert to Catholicism or die – with origins in Spain and Portugal. These individuals spread out globally, to Central and South America, to the US (particularly the Southwest), the Caribbean, the Philippines, Asia, Western Europe and even Eastern Europe.

In another recent article in a Pennsylvania paper, it reports:

Ten percent of breast cancer is caused by an incidence of a specific gene, which carries a 1 in 500 incidence rate. In those of Hispanic and EasternEuropean or Ashkenazi Jewish descent, the risk is 1 in 40.

While those who are aware of Sephardic history understand why so-called “Ashkenazi” breast cancer shows in the Hispanic community, it is worth repeating.

Tracing the Tribe often hears about cases in Southwest states in which Hispanics who present with the mis-named condition are asked if they have Ashkenazi background, which really confuses the patient and the family, who may or may not know their family’s roots.

It is obvious that much more education is needed among health professionals and genetic counselors everywhere. Hispanics also need to learn more about their own origins so that they can evaluate their own risks and roots.

This sounds like an excellent project for the Hispanic genealogical societies to get involved in by informing their own members.

Cancer specialist Dr. Marilyn Raymond said, in the interview, that “The reason the BRCA 1 gene is found in people of Hispanic ancestry is because during the Spanish Inquisition Jewish people, Sephardic Jewish people, left Spain and fled to Mexico to avoid persecution. Then they intermarried and had children with people in Mexico which led to the dissemination of the gene into that population,” Dr. Raymond said.

That is correct as far as it goes, but the doctor may need to brush up on Sephardic history. I don’t think it is because they married non-Jews in Mexico as she seems to state. Many, if not most, of the early Conversos who went to Mexico married other Conversos.

The bottom line: What is most important is that these findings mean that Hispanics need to be aware of their risks and their roots. Search Tracing the Tribe for many posts on this subject (use the search box in the right side bar).

Ohio: The Cincinnati-Kennedy connection

As the country mourns the loss of Sen. Edward Kennedy, one family feels the loss even more personally.

Cincinnati.com carried the story of the family of Boris Katz, now a top researcher at MIT’s Computer Science and Artificial Intelligence Laboratory. His daughter Jessica was called “The Littlest Refusenik,” and thanks to Kennedy, the family allowed to move from Moscow to Boston for life-saving treatment.

“Who can say why a congressman [Tom Luken] and people from Cincinnati got so involved?” said Katz, whose daughter married this summer. The family had no local ties but their situation touched the city’s Jewish community some 30 years ago.

Jessica was born in 1977 in Moscow with malabsorption syndrome, a disease that prevented her from digesting milk or food. Soviet doctors could not cure the condition, and as their infant daughter grew ever weaker, her parents realized her only hope for survival hinged on treatment in the West.

Soviet officials, however, denied the family permission to leave, citing security issues, as they often did in the case of “refuseniks,” the name given to dissidents but also to those whose only offense often was simply asking to leave the country. Boris’ wife, Natalya, had knowledge, Soviet authorities said, of state secrets through her job at the Soviet Institute of Experimental Meteorology and the Institute of Geophysics, a claim she denied.

“You never knew who would be denied a visa or why – and that was the point,” Boris Katz said. “They could say it was about state secrets, but that usually was just nonsense. The more arbitrary and random the process was, the less likely people would be to apply for a visa, knowing they could lose their job and have their life disrupted for the next 15 years.”

The story details the people involved in getting the little girl out of the Soviet Union. Among them were Lillian Silver of Roselawn, whose father-in-law Rabbi Eliezer Silver of Avondale, raised “millions of dollars funneled to passport thieves, counterfeiters, smugglers and even top Nazi officers to buy not just the freedom, but the lives, of Jews in death camps and trapped behind enemy lines.” As national president of Vaad Hatzala (Rescue Committee), his actions directly saved some 10,000 individuals and spared many more.

Children’s Hospital in the city was said to be one of the few centers equipped to treat the child’s condition and a volunteer told Silver, who launched a letter-writing campaign, arranged for local Jews visiting the Soviet Union to deliver the non-milk formula required. When Congressman Luken’s office was contacted for assistance, the local story brought in a national audience, including Kennedy’s staff, and others became involved in the medical and humanitarian aspects of the case.

The story has all the characteristics of a good espionage thriller. Phone calls from public phones, taxi cabs, strangers bringing supplies from the US.

“This was an amazing thing to us,” Boris Katz said in an interview last week. “In our small apartment in Moscow, we of course had no idea what a congressman or senator or people in America were trying to do for us. But it gave us hope.”

One woman who has stayed in touch with the family all these years was Dabby Blatt of Wyoming. In August 1978, her family visited the Moscow family.

Once Kennedy became involved, things moved faster. He visited Moscow in September 1978 to press Brezhnev to allow them to emigrate. Two months later, they arrived in Boston and she got the treatment she needed.

Thirty years on, Katz recalled, that he’s “still surprised how many people were brave enough to pack the baby formula and other things we needed in their luggage and then, despite KGB intimidation, deliver it to us in a dark Moscow street.”

“But this is the interesting thing about life – it only needs one person to give the spark and another to help.”

Blatt and her daughter attended Jessica’s July wedding in New York.

Read the complete story at the link above, and remember that it takes only one person to believe in a cause to accomplish major achievements.