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News & Updates

Aspa Continues Work on Gene Therapy Despite Covid-19 Epidemic

Read a message to the Canavan Disease community from Dr. Eric David, CEO of Aspa Therapeutics here

JScreen Passover Offer

Our friends at JScreen have a Passover special offer on at-home screening. They write:

While Passover may look a little different this year, the sentiments remain the same. Happy Passover from your JScreen family!

As we approach the holiday and you speak with friends and family, let them know about the importance of genetic testing and how it can save lives. Share coupon code JScreenAtHome for $18 off a test kit at JScreen.org. Coupon is valid for anyone between the ages of 18-45 in the U.S. and expires April 30, 2020.

On behalf of JScreen, we want to let you know that we are here for you during this difficult time. We are fortunate to be fully operational and continuing to provide at-home access to genetic carrier testing with remote genetic counseling, as we have always done.

Theater Benefit Postponed

The board of the foundation has postponed this year’s May 5th benefit of “Company,” recognizing that many of our usual, stalwart supporters would likely decide not to attend. We plan to reschedule, most likely in the early fall, when we hope the current crisis will have abated.

 

In Memoriam, Lois Neufeld (1946-2020)

The Canavan Foundation mourns the death on February 5th, 2020 of Lois Neufeld, past president, and board member extraordinaire. We placed the following obituary in the New York Times:

“NEUFELD--Lois. The Canavan Foundation mourns the passing of Lois Neufeld, a tireless supporter of carrier screening for Jewish genetic diseases. She served as president of the Foundation and was a founder of the Jewish Genetic Disease Consortium. She was endlessly generous with her time and inspired others with her dedication.”

Deedy Goldstick, a founding board member of the Canavan Foundation, was responsible for introducing Lois to the Canavan Foundation around 2002. Deedy remembers Lois, her neighbor on the upper west side of Manhattan, with such fondness: “She was so warm, outgoing, life loving, such a vivid, happy person.” Pat Hirschhorn, another long-time board member, also remembers Lois's important contributions to the mission of the Canavan Foundation: “Lois had such a vibrant personality...she was caring, concerned and so dedicated to the mission, a tremendous asset to the organization.” 

Lois had been on the board of the Canavan Foundation for only a short time when the second president of the organization, Roz Rosen, suddenly, and very sadly, passed away. Lois was tapped immediately for the job. With her media relations background, her ebullient outgoing personality, and her tremendous energy and commitment, Lois was the perfect person to take the reins. Her husband, Victor, was also recruited to the cause, as photographer and sound engineer, and he also proved to be a great friend to the foundation. (Lois and Victor, below.)

In short order, Lois realized that as the genes for more and more diseases like Canavan disease were being identified, it no longer made sense for the individual autosomal recessive disease organizations (diseases that had a 25% risk of an affected child with each pregnancy) like the Canavan Foundation and the ML4 Foundation, to advocate for carrier screening for their disease alone. She and the late Stanley Michelman, whose grandson had passed away from Tay-Sachs, a similar disease, decided to reach out to a number of these organizations to see if they’d be interested in joining forces to focus on educating people about the availability and importance of pre-conception carrier screening. 

It was a visionary idea, and they were successful in convincing ten disease organizations to come together to create the Jewish Genetic Disease Consortium in 2005.  With a mission of increasing “awareness about Jewish genetic diseases and encourage(ing) timely and appropriate carrier screening for all persons who have any Jewish ancestry, as well as couples of mixed heritage,” the JGDC today continues to see a need for education about carrier screening, and maintains a robust series of nationwide educational programs called “The JGDC In Your Community” for doctors and clergy and the general public that complement the doctor and clergy education programs of the Canavan Foundation. 

 The Canavan Foundation with Lois at the helm was a founding member of the JGDC in 2005 and has been part of the consortium since that time. In addition to continuing to serve as a board member of the Canavan Foundation, Lois also served as a Co-chair of the JGDC, and then as a board member on its executive committee. Lois was a tremendous force for good. We salute her for her initial vision, and for the energetic and unflagging persistence that encouraged others in the field to come together, and stay together, to prevent these deadly childhood diseases.

We miss Lois tremendously, and offer our deepest condolences to her wide circle of family and friends.

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.