March 25, 2024
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March 25, 2024
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Linking Northern and Central NJ, Bronx, Manhattan, Westchester and CT

Let’s ‘Shine a Little Light’ on ALS

Last week, I casually shared a video on Facebook. It was a beautiful, professionally produced music video featuring some of the “Jewish greats” performing today… Many names I recognized: Mordechai Ben David, Avraham Fried, Benny Friedman (of “Todah!” fame), Gad Elbaz and of course The Maccabeats, of whom my children are big fans, and many more names I am sorry to say I don’t yet know. It was a mash-up of top Jewish male performers, from all over the globe, singing a lovingly arranged, lyrically orchestrated song called “Shine a Little Light,” written by a certain Rabbi Yitzi Hurwitz, a bedridden man featured in the video with a dark beard, who had been diagnosed with ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s Disease, in 2013, at the age of 41.

This was all I knew, until a few hours later when I checked in on Facebook again. I had a chat message from a friend named Shira, who grew up with me in the same neighborhood in California. We attended the same Lubavitch Hebrew Academy for several years, and carpooled together. “You know who that is, right?” she asked.

“No,” I answered. “Who is it?”

“It’s Dina Berkowitz’s husband.”

I went back and looked at the picture of the family featured at the end of the video. Dina Berkowitz. Now Hurwitz. Her father was one of the founders of Chabad of Huntington Beach. She was one of the “rabbi’s kids,” with whom I didn’t really fit in or socialize, but we were in the same class of only about 10 or 12 kids for a number of years.

Leaning into my computer screen, I looked closely into the face of a woman I hadn’t seen in 25 years, probably since we graduated fifth grade and I left the Hebrew Academy for another school. It was the same Dina. I remembered her face like it was my own. I would know it anywhere.

I began to seize up with tears of pain, tears of sympathy for the girl I knew. Now, unbeknownst to me all these years, she had become the matriarch of a family facing ALS.

A progressive, neurodegenerative, fatal disease, ALS slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages two to five years from the time of diagnosis. According to research literature, every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose his battle against it. ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries. It is not a genetic or environmental disease and it’s not caused by any allergies or viruses.

Doing some additional reading online, I learned that Rabbi Yitzi and Rebbetzin Dina had been shlichim at the Chabad of Temecula, in California, and that they had been there for 15 years. They have seven beautiful children.

With genuine anguish, I read about how vibrant and magnetic Rabbi Yitzi was, and how now he is 95 percent paralyzed and communicates, miraculously, and still vibrantly, by using the same eye-gaze machine that I knew Itch Zeidel, z”l used during the last years of his life.

I never met Itch, a Teaneck resident from the Beth Aaron community, who was diagnosed with ALS in 2012, but one of the first cover articles I wrote for the Jewish Link back in 2014 was to profile “Team Zeidel” and their annual ALS walk. Through his wife Marilyn and his daughter Dassi, I learned of Itch as a loving, gifted, patient, charismatic educator, and a beloved father and cherished zaidy, who was having his faculties taken away, some slowly, some quickly, through this nightmare of a disease that is ALS. But one thing that ALS doesn’t get, ever, is the human spirit and the true lovingkindness we share with one another through illness, aging and everything in between.

The first time Team Zeidel got together to walk, they set a goal to raise $2,500; but it seemed they forgot to factor in how many people loved them: they raised almost $20,000 to fund ALS research that year.

Dassi Zeidel, Itch’s daughter, continues to inspire me with her calm soul, joyous smile and depth of spirit. Though a few months into aveilut, an email from her arrived in my inbox just the other week. “Dad lost his battle with ALS on January 12—This year we’re walking in his memory to continue raising money and awareness to bring a cure. This Wednesday, March 30, marks what would have been Dad’s 68th birthday. In commemoration, we hope you’ll consider joining our walkteam and/or making a donation in his memory:

http://webgny.alsa.org/site/TR?pg=team&fr_id=12007&team_id=347796

So today, I want to “shine a little light,” in memory of Itch Zeidel, z”l, who had a triumphant human spirit, who was taken from his family and friends too soon, and I also call your attention to the need to support the family of Rabbi Yitzi Hurwitz, in California. Whatever you do with this information, please take a few moments to learn of this disease and find a way to shine a light on it. Learn more and see the video that moved me here: https://www.youtube.com/watch?v=uGWoChObb40.

By Elizabeth Kratz

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