The Voice of the Lehigh Valley Jewish Community
www.jewishlehighvalley.org
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Issue No. 442
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April 2021
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Nisan/Iyyar 5781
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Celebrate Israel with us in our special section p6-7
See how PJ families celebrated Passover p18
FROM THE DESK OF JERI ZIMMERMAN p2 LVJF TRIBUTES p8 JEWISH FAMILY SERVICE p11 JEWISH COMMUNITY CENTER p14-15 JEWISH DAY SCHOOL p16 COMMUNITY CALENDAR p23
Local Jewish family prays for second miracle in fight against daughter’s rare disease By Stephanie Goodling HAKOL Editor Jen and Zack Einstein fell in love 17 years ago during rehearsals of a play they were in together at Civic Theatre of Allentown. After getting married in 2010, they were eager to start a family. Soon, however, they would discover they were facing a long battle with infertility necessitating in vitro fertilization (IVF) treatments. The first round of IVF resulted in a miscarriage, the second round in the stillbirth of their son, Nachmiel, and the following six rounds were failures. Then, the miracle came with round nine. Their daughter, Ellery, was born in 2015, and it seemed like happily ever after at last. The first sign that Ellery might have a developmental delay came when she was two years old. She immediately started receiving speech therapy. Later, once she was a student at the Jewish Community Center of the Lehigh Valley’s Early Childhood
Education program, she began receiving speech therapy, occupational therapy and specialized instruction services once a week. Life carried on fairly normally, however, for the next two years. Last April, when Ellery was 4, Jen noticed her falling to the floor and shaking. Doctors initially wrote it off as clumsiness or bids for attention. Jen knew Ellery’s seizures were more than that and contacted the Children’s Hospital of Philadelphia (CHOP). On Nov. 16, 2020, after a battery of tests, she and Zack finally received the grim diagnosis – Batten disease. As defined by the National Institute of Neurological Disorders and Stroke, Batten disease is the common name for a broad class of rare, fatal, inherited disorders of the nervous system. In these diseases, a defect in a specific gene triggers a cascade of problems that interferes with a cell’s ability to recycle certain molecules. The disease has several forms that share some of the same features and symptoms but
vary in severity and age when symptoms first begin to appear. Each form is caused by a mutation in a different gene. The variant Ellery has is known as CLN6, one of the rarer forms of Batten disease. Symptoms vary among children, but typically start after the first few years of life and include developmental delay, changes in behavior and seizures. Children eventually lose skills for walking, playing and speech. They also develop myoclonic jerks, problems sleeping and vision loss. Most children with CNL6 die during late childhood or in their early teenage years. Since finding out about Ellery’s condition, Jen and Zack have been tireless advocates for their daughter. Jen not only sets up the CHOP appointments, but she continues to work on trying to find a cure, speaking with researchers both in the U.S. and abroad. The family drove to Columbus, Ohio, earlier this year to Nationwide Children’s
Hospital, where there is a clinic specifically focused on Batten disease. Zack takes Ellery to her weekly speech, occupational and physical therapies. “We love her whole team at CHOP. They encourage us to keep going with the services. We want to keep her skills and everything as strong as possible for as long as possible,” said Zack. There is currently no cure for Batten disease. However, there is research being done, the most promising of which currently is using gene therapy to slow its progression. The Einsteins have been in close contact with the pharmaceutical company who recently completed the gene
therapy clinical trial. They are hopeful that science may yet be able to save their daughter. The clinical trial was done at Nationwide Children's Hospital. The goal of the aforementioned trip to Nationwide was to make sure that Ellery wasn't simply a name on a list when the next trial happens, but instead a patient who had an established connection with the Nationwide team. The Einsteins were told that it was likely that Ellery would qualify for the next trial. Then, a setback: blood results showed that Ellery has high Einstein Continues on page 22
Noted Jewish scholar to kick off ‘season of independence’ By Stephanie Smartschan JFLV Director of Community Development & Operations Avraham Infeld has invested a lifetime building Jewish identity and strengthening the State of Israel. On Sunday, April 11, at 10 a.m., Infeld, one of the most Non-Profit Organization 702 North 22nd Street Allentown, PA 18104
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unique and compelling leaders in the Jewish world today, will speak to our community on the “season of independence.” His talk will take place a few days after Yom HaShoah and a few days before Yom Hazikaron and Yom Ha’atzmaut. While these are three distinct events – two somber, one celebratory – Infeld will help us make sense of why they all occur within a week of each other. “Ultimately, all of these events tie back to the importance of the State of Israel, and Avraham Infeld is certainly the best to speak to that. You won’t want to miss his presentation,” said Jeri Zimmerman, executive director of the Jewish Federation of the Lehigh Valley, the program’s sponsor. Prior to Infeld’s talk, the Lehigh Valley will mark Holocaust Remembrance Day with a virtual ceremony on Wednesday, April 7, including a personal story and
orchestral performances (see story on page 6). After his talk, the Federation will host three more events to mark Yom Hazikaron – Israel’s Memorial Day – and Yom Ha’atzmaut – Israel’s Independence Day. On Tuesday, April 13, at 7:30 p.m., community shlicha Gavriel Siman-Tov will lead us in a ceremony to honor Israel’s fallen soldiers and victims of terror attacks. The program will feature Itai Bachar and his involvement with a project in Israel called “These Are My Brothers.” Through this initiative, which uses lyrics or poems written by IDF soldiers and converts them into songs, Bachar wrote a song to honor Colonel Ariel Buda. He will speak about Buda, why he chose the song and the special relationship he maintains with Buda’s family. On Wednesday, April 14, at
7 p.m., as day turns to night and Yom Hazikaron ends and Yom Ha’atzmaut begins, Siman-Tov will present another program to celebrate Israel through modern music. Then on Thursday, April 15, it’s time to party! A virtual family friendly dance party will kick off at 4:30 p.m. to celebrate Israel’s 73rd birthday along with our partners in Yoav. The first 100 families to register will receive a free kit from Yoav that they can use as part of the celebration. Later that evening, at 7 p.m., our community is invited to participate in the global Yom Ha’atzmaut celebration presented by the Jewish Federations of North America. The program will feature a special farewell to Israeli President Reuben Rivlin. All of these events are free and open to everyone. To learn more, visit www.jewishlehighvalley.org/yom.