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News & Updates

Canavan Foundation News

Research Updates

News from Our Partner Organizations

Links to Articles of Interest

Canavan Foundation News

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.

New Brochure Lists 38 Diseases of Concern to Ashkenazi Jews

Early this fall, with our input, the Jewish Genetic Disease Consortium (JGDC), of which the Canavan Foundation is a founding member, produced an updated version of the comprehensive educational brochure on Jewish genetic diseases. The brochure will be given to doctors at Grand Rounds — presentations at hospitals — placed in Ob-Gyn offices, and distributed to rabbis and cantors.

The brochure highlights that there are now more diseases for which people of Ashkenazi ancestry can be screened — up from 19 to as many as 38. It also emphasizes that interfaith and Jewish couples, as well as those who may not self-identify as Jewish, should consider carrier screening before they start a family.

By emphasizing that genetic heritage is separate from religious identity, we hope to encourage even more couples to seek timely and complete carrier screening. Because the field of genetic testing is changing so rapidly, the new brochure has a free-standing list of diseases for which tests are available, which can be changed as test offerings expand without needing to revise the brochure.

For the complete disease list or to order a copy of the new brochure, visit the JGDC website.  

Canavan Foundation 2013 Newsletter Now Available

The Canavan Foundation's 2013 newsletter is now available for downloading in PDF format.  Read about our continuing programs to educate OB/GYNs and rabbis, a surprising new study of the prevalence of "Jewish" genetic diseases in the non-Jewish population, and more.

OB/GYN program blankets tri-state metropolitan area.  

Since the beginning of the summer, 2012, the Canavan Foundation has been visiting OB/GYN offices throughout the New York Metropolitan area, distributing patient-education brochures and an information binder for doctors.  We started with Manhattan, then moved to the outer boroughs, and are now working in Westchester and Nassau counties.  We have visited more than 1,000 doctors in over 400 practices and distributed almost 30,000 brochures.  We've received a very positive reaction from the practices we've visited, and when we're made a second visit we've found that 100% of the practices have been distributing the brochures.

COUPLES AWARE program marks three years of providing education and resources to rabbis and cantors.

In October of 2010, the Canavan Foundation partnered with the Jewish Genetic Disease Consortium to launch a program to provide education and resources to rabbis and cantors in the New York metropolitan area.  Research showed that the best time to reach a couple with the message about screening was just before marriage, so we developed a program to encourage rabbis to include information on preconception carrier screenng in their premarital counseling sessions.  We trained well over a hundred rabbis and cantors in group training sessions, then mailed materials to hundreds more.  Two years after the launch of the program we have provided materials to nearly 1,000 rabbis, and the program has been taken to many areas outside of New York City.  We thank our partners in this project, especially the New York Board of Rabbis and UJA/Federation of New York, which provided important financial support.   We invite you to learn more about our recommendations for rabbis, cantors and other clergy and to watch    Rabbi Diana Gerson of the NYBC explain how she integrates a discussion of screening into premarital counseling. 

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Research Updates  

In Utero Transfusion and Bone Marrow Transplants Show Some Promise

Experimental in utero transfusions and bone marrow transplants seem to show promise for children with some genetic conditions. The New York Times reports on a child in San Francisco with alpha thalassemia major, a disease prevalent in populations from Asia, the Mediterranean, Africa or the Middle East. Click here for article.

"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).

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News From Our Partner Organizations

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.  

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Links to 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. 

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