Jennifer’s power


How do you deal with a future that you know for sure is going to get worse? That was the question on my mind when I met Jennifer, a mother of two who has a rare neuromuscular disease called hereditary inclusion body myopathy (HIBM). I was introduced to Jennifer (she asked me not to use her last name) by my friend Sharon Glaser, co-founder of Genetestnow.com, an awareness and educational initiative that TRIBE Media Corp., parent company of the Jewish Journal, has helped create to promote the importance of screening for genetic diseases.

Jennifer’s condition, also known as GNE myopathy, attacks muscle function and worsens over time. She was already seated when I met her at Pat’s for lunch, so I couldn’t see that she has difficulty walking. All I saw was an elegant woman in her late-30s with a delicate, soulful face and an easy smile.

Do you know that feeling when you meet someone and immediately click? Jennifer and I got silly within minutes. It was as if she were my long-lost buddy from high school. After about 90 minutes of banter and laughter, interrupted by occasional insights about life, I realized I had done a terrible job of discussing how she handles her disease. I’m not sure it even came up.

Her condition became noticeable only when we got up to leave and I noticed a slight awkwardness in her walk. Before we said goodbye, she told me how excited she was about attending a medical conference on HIBM the following week in Berlin.

On one of her blog posts from the conference (she blogs on livingwithhibm.com), she wrote about what she calls “meant to be moments”:

“I often, in the context of this disease, have a lot of ‘meant to be moments.’ I imagine we all do, as one of our many coping tools. For example, the fact that I had been working out since I was 14 years old was ‘meant to be,’ since it put my body in the best possible shape before beginning its premature decline (sorry, just keeping it real).”

She brought up a moment at the conference that felt almost too real. She had noticed a Japanese woman named Yuriko in an electric wheelchair whose physical “decline” was much further along than Jennifer’s. 

“Throughout the day,” Jennifer wrote, “I couldn’t help but be distracted. I watched how [Yuriko’s] husband removed her scarf for her when she got warm. I observed how he brought a glass of water to her lips when she was thirsty. … I looked at her and wondered how she looked so beautiful, so neatly dressed with her hair perfectly tied up in a pony tail. I wondered how much time went into her simple act of getting dressed.”

The hardest moment came during dinner: “I went to sit at Yuriko’s table for a bit to chat as best we could given the language barrier. We enjoyed each other. We shared our experiences as mothers, as wives and as patients. But when the food arrived, I chose to go back to my seat, because I wasn’t ready to watch her husband cut up her veal schnitzel for her and then feed it to her. I may be strong. But not that strong.”

When I met up with Jennifer again after her return from Berlin, I was determined to discuss her condition. By now, I had read all her blog posts and I was armed with a notepad and plenty of questions. 

This time, we met in her office in Westwood. Jennifer is a psychiatrist, so I had the benefit of a comfortable couch. We spent the first 10 minutes discussing something I had just heard on a jazz station on the way to her office. A musician was talking about how he had learned so much from the great Miles Davis — but that Davis’ lessons were always “indirect.” He never spelled things out. He gave you clues, asked questions, all so that you would learn the lessons for yourself.

Jennifer seemed to channel her inner Miles Davis during the rest of our meeting. She asked questions, and I tried to give answers. Before I knew it, she had turned the tables on me: Instead of talking about her, we ended up talking about my own life and my own problems, and I confess, it felt pretty good. But I never did get to ask my original question: How do you deal with a future that you know for sure is going to get worse?

So, as I drove away and reflected on what had happened, it dawned on me that maybe I had to figure out the answer for myself. What I came away with is that no matter how difficult Jennifer’s condition gets, what helps her cope is the knowledge that she still has the power to help other people.

I know, because I’m one of the people she helped.


David Suissa is president of TRIBE Media Corp./Jewish Journal and can be reached at davids@jewishjournal.com.

Theo for Jews in Poland, Italian seder, HIBM awareness


Theodore Bikel Plugs Jewish Life in Poland

Passionately devoted to the resurgence of Jewish life in Poland, entertainer Theodore Bikel, accompanied by Tamara Brooks, performed an hour-long private concert of Yiddish, English and Hebrew songs to benefit the nonprofit Friends of Jewish Renewal in Poland.

More than 70 people attended the fundraiser, held in the Brentwood home of art collectors Elyse and Stanley Grinstein. They included Los Angeles County Supervisor Zev and Barbara Yaroslavsky; Rabbi Mark Diamond, executive vice president of the Board of Rabbis of Southern California; professor David Myers, director of the UCLA Center for Jewish Studies; Polish Consul General Paulina Kapuscinska; and Jewish Federation COO Ken Krug and Andrea Scharf.

Hosting the event was Severyn Ashkenazy, Friends of Jewish Renewal board member and co-founder of Beit Warszawa, Warsaw’s first progressive synagogue since World War II, headed by American Reform rabbi Burt Schuman and assisted by Russian-born Israeli Reform rabbi Tanya Segal.

“Don’t let anybody tell you Poland is a graveyard,” Bikel said. “It’s a place of living, breathing Jews today.”

— Jane Ulman, Contributing Editor

Italian Seder Sizzles at Skirball

Traditional Passover seders are on their way out, and specialized seders are this year’s hot ticket. April is loaded with various options, including intercultural, interfaith, alternative and sober seders, where ancient traditions meet modern sensibilities.

Recalling the fare of Jewish ghettos in ancient Rome, the Skirball Cultural Center kicked off the seder season with its delizioso Italian Seder, a tribute to the history of Jewish Italian cuisine.

The idea may sound puzzling, given the Italians’ overwhelming penchant for pork meatballs and shellfish, but chef Sean Sheridan placated the discriminating palate with a six-course feast: Charoset Italiano with figs, dates and oranges; branzino grilled with leeks, parsely and lemon; sfoglietti with chicken soup and herbs; and osso buco of veal with gremolata and garlic spinach.

But the meal was not enough to distract the table from delving into divisive political conversation, and by dessert, improptu Democratic debates overshadowed the sweetness of the kosher wine.

ARM-ing for a Cure


ARM emcee Cara Yar Khan and ARM volunteer Mansour Pouretehad. Photo by Karmel Melamed

Medical researchers were honored for their work by the Advancement of Research for Myopathies (ARM) at a gala event on March 16 held at the Los Angeles Airport Marriott.

Nearly 600 guests from various countries and backgrounds gathered to help raise funds for additional research on a cure for hereditary inclusion body myopathy (HIBM), a progressive and debilitating genetic muscle disease. While it’s possible to inherit the disease from parents of Asian or European ancestry, HIBM primarily affects Jews of Middle Eastern ancestry, including some Iranian Jews.

One of the organization’s founders, Dr. Babak Darvish said over the years ARM has battled to remove the stigma the Iranian Jewish community has feared in publicly acknowledging family members with HIBM.

“My brother and I are both physicians, we were both affected by this disease — so we felt we had to take action and we founded ARM in 1997 in our living room,” Darvish said.


ARM co-founder and president Dr. Babak Darvish.Photo by Karmel Melamed

“Now the organization has gone international to help everyone, not just Iranian Jews, with this disease.”

While the genetic variation for HIBM has been located, an effective treatment for the disease has not been created, Darvish pointed out.

For more photos from this event, visit the Iranian American Jews Blog at http://jewishjournal.com/iranianamericanjews/

— Karmel Melamed, Contributing Writer