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News & Updates

In Memoriam, Seth Gelblum (1954-2016)

It is with deepest sadness that the Canavan Foundation mourns the death of board member and co-founder Seth Gelblum, who passed away on August 8th, 2016 after a long illness.

Seth and his wife, Orren Alperstein, founded the Canavan Foundation in 1992 after their 15 month-old daughter, Morgan Gelblum, was diagnosed with Canavan Disease. Seth’s energy and wise counsel were instrumental in the growth and success of the Canavan Foundation. As one of the nation’s foremost entertainment lawyers, he was a moving force behind the Canavan Foundation’s annual Theater Benefit, and his Q&A sessions with noted theater personalities were a highlight of the dinner before each year’s production.

Seth graduated from Wesleyan University and Georgetown University Law Center. A partner at Loeb & Loeb LLP, Seth chaired the theater department, representing writers, producers, directors, performers and others involved in the theater, television, and film industries. Seth received numerous professional accolades throughout his life; most recently, he was a recipient of a 2016 Tony Honors for Excellence in Theater. In a rare honor, the marquee light s of the Broadhurst, Gershwin and New Amsterdam theaters will simultaneously be dimmed in Seth’s memory after a memorial celebration open to the public on September 25th at the Broadhurst Theatre, 235 West 44th Street, at 6 pm.

Alongside his dedication to his work, Seth was a loving and devoted husband, father, and friend. In addition to the Canavan Foundation, he was deeply involved with Lawyers for Children and New Dramatists.

To make a donation to the Canavan Foundation in Seth’s memory, please click here. For Lawyers for Children, click here; for New Dramatists, click here.

The Canavan Foundation's 2016 newsletter is now available.  Read about the expansion of our outreach to Jewish clergy, our continued outreach to Ob-Gyns in the New York metro area, and more.

"Jewish" Genetic Diseases in the Non-Jewish Population

A recent article in Genetics in Medicine finds that while genetic disease carrier rates among persons of Ashkenazi Jewish heritage were the highest of all population groups screened, a significant number of carriers do not belong to any known risk group.

The article, published online last year, reviewed the results of screening more than 23,000 individuals for 108 genetic diseases by means of the Universal Genetic Test by Counsyl.

As expected, persons of AJ heritage were the most likely to be carriers for genetic conditions.  43.6% of those self-identified as Ashkenazi were carriers of at least one condition and 13.3% were carriers of more than one condition. 

However, a significant number of individuals who did not self-report Ashkenazi heritage were found to be carriers of diseases traditionally identified as Ashkenazi.  39.4% of the carriers for Canavan disease were not Ashkenazi, as were 40.4% of the carriers for Tay-Sachs, 50.0% of the carriers for ML-4 and 49.3% of the carriers for Gaucher disease.

The carrier rates for these diseases are many times lower among the general population.  For Canavan disease the study found only 1 in 683 non-Ashkenazi carriers versus 1 in 55 in the Ashkenazi population.  But the number of non-Ashkenazi carriers is much closer:  for Canavan disease 28 of the carriers were non-Ashkenazi compared with 43 in the Ashkenazi population. 

 These findings do nothing to diminish the continuing need for genetic carrier screening for persons of Ashkenazi Jewish heritage.  But they do point out the utility of universal screening of the general population for a wide range of diseases, which will uncover carriers of serious genetic diseases who otherwise would only learn of their carrier status when they give birth to an affected child.


Research by Dr. Guangping Gao shows promising results in research in mice

Partially funded by the Canavan Foundation in collaboration with National Tay Sachs And Allied Diseases, we are excited to provide a link to Dr. Guangping Gao's paper recently published in Molecular Therapy describing his work on gene therapy in Canavan mice.  (Final report posted 7-9-13)

Gene replacement therapy seems to show promise for Canavan disease. A recently-completed study in mice, conducted by Dr. Guangping Goa, jointly funded by the Canavan Foundation and National Tay-Sachs and Allied Diseases, showed slowing of the course of the disease as a result of injecting the aspartoacylase gene into mice bred to have an enzyme deficIency similar to that which causes Canavan disease in humans.  Download Dr. Gao's Summary Report (2 pages) or Full Report (31-page PowerPoint presentation).


Chicago Center for Jewish Genetic Disorders relaunches as Center for Jewish Genetics.

The Chicago Center for Jewish Genetic Disorders has changed its name to The Center for Jewish Genetics.  Visit their site to learn more about the imporant work they do in the Midwest.  


Recent Articles of Interest

"Jews are a Race." In his new book, “Legacy: A Genetic History of the Jewish People,” Harry Ostrer, a medical geneticist and professor at Albert Einstein College of Medicine in New York, claims that Jews are different, and the differences are not just skin deep. Jews exhibit, he writes, a distinctive genetic signature.

"A Tree Will Only Be As Strong As Its Roots."  Jewish Press, January 23, 2013.  A genetic counselor who participated in the JGDC's Rabbi Education Program reflects on the continued need to promote Jewish genetc disease screening.  

"Genetic Testing Poses Jewish Ethnical Issues,"   The Forward, November 25, 2012.   The expanding power of genetic screening raises ethical issues.

“The Joys and Dilemmas of a Woman Physician”  Jerusalem Post,  October 11, 2012.   Profile of an Orthodox Jewish woman OB/GYN and fertility specialist in Israel. 

“A Community’s Twist on Genetic Tests,” Wall Street Journal, July 12, 2012.  A critical look at Dor Yeshorim, the carrier screening program utilized by the ultra-Orthodox.