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In Memoriam - Lois Neufeld

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.