In a new network, Jewish cancer survivors are finding the understanding they need

Roni Bibring was 15 when she was diagnosed with leukemia. Four years later, her treatment completed, she says her biggest challenge—having lost touch with many of her friends—is making new friends who understand what she’s been through.

“Most people don’t even realize that they’ve completely lost touch with you and that’s the thing you need the most,” said Bibring, of Englewood, N.J. “They think because you don’t text them every day that you don’t want them in your life, but you might not even be conscious,” adding that “You could be asleep for days in a row.”

Through R-Mission, a support network for Jewish cancer survivors that held its inaugural event in New York last month, Bibring is finding people who do understand.

“I have a lot of scars, and they would never judge me for it because they probably have similar things on their body, too,” said Bibring, who is featured on the group’s website. “Just not having to be judged and to have friends that understand why you look a certain way is the best part.” 

Cheryl Greenberger said her work as a psychologist at Chai Lifeline, which provides support and a camp for Jewish children with life-threatening illnesses, spurred her to create R-Mission—as in remission—as a Chai Lifeline program.

“What people were asking for and looking for was a way to connect with other people who could relate to them and understand them in a way that even close family members and close friends couldn’t relate to them,” Greenberger said.

The group’s website,, includes a discussion forum open only to those who have registered, as well as a resource section with links to everything from cancer research foundations to support groups to organizations that give scholarships to young people who have had cancer.

Although events will be held in New York, Greenberg points out that the discussion forum can reach a global audience. More than 100 people already have registered, many of them from outside the United States.

An online community, she says, gives “people the opportunity to really be open and honest with the questions they had without publicly announcing themselves.”

Bibring says she is glad to meet people who have had experiences similar to hers.

“All of us went through the same thing,” she said. “They understand what you are going through and they are not going to ditch you. They are there for you when you aren’t feeling well.”

Melanie Kwestel, Chai Lifeline’s director of communications, anticipates that R-Mission will draw its initial members from Chai Lifeline. But she says the goal “is to reach people of all types of cancer beyond just pediatric cancer, and with online advertising we can reach a bigger audience.”

For now, the majority of those involved in R-Mission are Orthodox, but through online advertising and word of mouth, officials hope to reach Jews across the denominations.

David Pelcovitz, a professor of psychology and education at Yeshiva University’s Azrieli Graduate School and a member of the R-Mission advisory committee, said a stigma long surrounded cancer. In Yiddish, cancer was referred to as “yenem machla,” an affliction from the other world.

“It was almost too dread a reality to even face and name,” Pelcovitz said. “We’ve come a long way since then, and this is another example of being able to openly discuss, openly support, and to openly name the monster.”

The stigma, however, remains and it is most prevalent in the Orthodox community, Kwestel said, pointing in particular to a culture in which matchmakers are common. Before the couples meet, they learn much about one another’s background.

“There are people who aren’t going to date someone who had cancer, but it’s just not acceptable in the non-Orthodox community to say that,” Kwestel said.

Unlike Sharsheret, a nonprofit founded a decade ago to focus on young Jewish women who have or were treated for breast and ovarian cancer, R-Mission is the first Jewish organization dedicated to connecting Jewish survivors with all types of cancer, according to Greenberger.

Kwestel says that many who have survived cancer are seeking a sense of community.

“Sometimes people say I’m not religious, I don’t do Shabbos, I don’t do kosher but I’m Jewish,” she said. “There’s still this feeling of affiliation and there is a feeling that in any kind of traumatic situation, we look back to our families and community.”

Bibring says that she is excited that R-Mission has been working closely with survivors to ascertain their needs.

“It’s like we are building our own organization by the means that we have. I think it’s awesome; it’s the best thing you can ask for,” she said. “Different people have different needs, so it’s nice that they are asking us.”

Greenberger wants R-Mission to be a program “for survivors by survivors.”

“I hope that we will develop a strong community where no one will feel alone anymore when they complete treatment, and that people will feel like there is a place they can go where people understand them,” she said. “We really want to empower survivors.”

Acclaimed writer Nora Ephron dead at 71

Writer and film director Nora Ephron, known for work on movies such as “When Harry Met Sally,” has died in New York at age 71, according to media reports Tuesday night, hours after it was first revealed that she was gravely ill and near death.

A spokeswoman for her agency, Los Angeles-based Creative Artists Agency, declined to comment on the reports. Nicholas Latimer, a spokesman at publishing company Random House, told Reuters Ephron was “gravely ill.”

He could not confirm reports that she had died, which was reported by The New York Times, The Washington Post and show business newspaper Daily Variety.

Earlier on Tuesday, New York based gossip columnist Liz Smith told entertainment industry website The Hollywood Reporter that she had spoken to Ephron’s son, Jacob Bernstein, and the family is already planning a funeral.

“I was told this morning that she was dying, but I can’t confirm it,” The Hollywood Reporter quoted Smith as saying.

ABC News posted a story on its website citing sources close to the family as telling the TV network Ephron is “gravely ill.”

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Ephron, known for screenplays “When Harry Met Sally,” “Sleepless in Seattle” and more recently, “Julie & Julia,” which she also directed, had not publicly addressed suffering from any illness in recent months.

During a long career, Ephron has written for newspapers and magazines. She published books and essays, but is perhaps best known for her work in movies.

She was nominated for three Academy Awards for writing romantic the comedies “Harry Met Sally,” “Sleepless in Seattle” and drama “Silkwood.”

Reporting By Piya Sinha-Roy; Editing by Bob Tourtellotte and Philip Barbara

Doctor fighting leukemia seeks matching donor

A veteran physician diagnosed with leukemia is hoping to find a compatible bone marrow match within the Jewish community to help him beat back the life-threatening disease. Be The Match, the National Marrow Donor Registry, is holding a donor screening on Thursday at USC’s Rand Schrader Health and Research Center.

The identity of the doctor is being kept confidential. He is of Jewish descent and has been with Los Angeles County-USC Medical Center for 20 years. So far no compatible matches have been found. Race and ethnicity are important factors in compatibility, and the physician will likely require a Jewish donor.

People willing to donate bone marrow or peripheral blood stem cells, who are generally healthy and between the ages of 18 and 60, are encouraged to register. The process is free and the majority of potential donors will have their cheek swabbed to determine compatibility. If selected, Be The Match will provide potential donors with additional information on the donating procedure, which the organization says is relatively painless. 

The screening will be held on June 14, 10 a.m.-2 p.m., at the Rand Schrader Health and Research Center, 1300 N. Mission Road, Los Angeles. For more information or to register, call (626) 373-4000 or visit

For Marla Gilson, leukemia sparks massive Jewish bone marrow drive—and fight with employer

Marla Gilson found out in January that she had acute leukemia.

By March, she learned that her disease had cost her not only her good health, but her job leading an advocacy group for the Jewish aged.

In quick succession, friends, colleagues and acquaintances in Washington’s Jewish activist community rallied to Gilson’s bedside to support her in her fight with her employer—the Association of Jewish Aging Services—and also to champion a wider cause: registering Ashkenazi Jews as potential bone marrow donors.

Gilson, a Capitol Hill presence for decades with stints working for Hadassah, the American Israel Public Affairs Committee and several Democratic Party campaigns, told friends she did not want a tribute. Instead, she said, she wanted to alert Jews to the need to register with Gift of Life, the national bone marrow registry.

“She was happy to raise the issue,” said Laura Cutler, who heads the Israel studies program at American University and serves on the boards of several Jewish family foundations. “We saw it as a way to get more Jewish potential donors.”

A bone marrow match was found for Gilson, who is now in remission. She is scheduled to undergo a bone marrow transplant next month.

Gilson declined to be interviewed for this story, but friends and colleagues who talked to JTA offered details of Gilson’s fight against the Association of Jewish Aging Services and talked about how Gilson’s illness had inspired them to support the cause of bone marrow donor registration.

Gilson long has been known in Washington for her advocacy work for federally funded stem cell research and for banning the use of genetic information in employment. As director of Hadassah’s Washington office, she usually was in the room when presidents met with Jewish leaders; her last such meeting was with President Obama in July 2009. That meeting came not long after Obama signed an executive order earmarking funds for stem cell research – something that Gilson had spent the better part of her career advocating for.

Within months, however, Hadassah was reeling from its losses as a victim of Bernard Madoff’s Ponzi scheme and, with the organization in financial distress, Gilson lost her job.

She was soon hired as president and CEO of the Association of Jewish Aging Services, an umbrella body for homes for the aged in the United States and Canada. Within six months, Gilson was preparing a budget for the organization and was well on her way to organizing a conference in Dallas that took place this week. The association’s board of directors applauded her work, calling her prompt and effective.

After she learned of her illness and began chemotherapy, Gilson asked the association’s board if she could work from home because she was vulnerable to infection. She promised to return to work by Sept. 1—the date by which she now expects to be sufficiently recovered from her bone marrow transplant.

However, according to email exchanges obtained by JTA, the board balked, saying Gilson’s job was too critical to do from home.

“Your proposal, if accepted, would pose undue hardship to our organization,” an email from the board stated, noting that board members had been filling in for many of her duties since she became ill.

The emails show that Gilson offered to dedicate part of her salary to a consultant who would fill in the gaps until she returned to the job, but the Association of Jewish Aging Services said no.

“We cannot dedicate the same time until you return or while a temporary consultant, assuming one could be recruited and engaged, becomes familiar with our issues, members, industry, partners, etc.,” an email from the board stated.

The Association of Jewish Aging Services board declined a request for comment on this story.

The organization informed Gilson that she would be terminated as of April 26, but promised to rehire her if no replacement had been found by the time she recovered.

Last week, the board told the association’s members that it was searching for a new president.

The same friends who had rallied to Gilson’s side when she learned she was ill – sitting at her hospital bedside, making meals for her family – are now consulting daily on strategies for confronting the Association of Jewish Aging Services and forcing it to keep her on. One friend offered the services of her labor lawyer husband, who has argued that basing a dismissal on a prognosis may amount to discrimination. No lawsuit has been filed.

“I don’t know how you treat anyone like this, never mind someone you know and love,” said Steve Rabinowitz, a former Clinton administration communications official who now runs a policy and public-relations shop for Jewish and liberal groups.

For Gilson’s friends and colleagues, the fight for her job is their second battle on her behalf. Almost as soon as Gilson went public with her illness, they launched a campaign to find her a bone marrow match.

On Feb. 25, a group of Jewish notables across the country sent around a letter about Gilson’s illness, urging Jews to register as potential bone marrow donors.

“Hundreds and hundreds of women who participated in Hadassah’s Day on the Hill were empowered and touched by Marla’s determined advocacy in our victory for the right to genetic non-discrimination and stem cell research,” the letter stated. “It is now our turn to rally and advocate for Marla – and we urgently need your help.”

As it turned out, by the time the letter went out, a bone marrow donor already had been identified for Gilson. Rather than directly assisting her, the letter became a way to honor her and her career.

Jewish groups in New York and Washington responded to the call. Bone marrow donor registration drives—which involve getting the inside of the potential donor’s cheek swabbed so a sample can be tested—were held at Hadassah headquarters in New York, at Purim parties in Washington, at the Washington D.C. Jewish Community Center and at the K Street headquarters of several national Jewish groups.

At the K Street drive, organized by Jennifer Laszlo Mizrahi, founder of The Israel Project and a friend of Gilson’s, 48 people registered as donors over the course of two hours.

“She would walk on hot coals for the Jewish people, and she has never been shy about speaking out on behalf of others,” Mizrahi said of Gilson. “So if I can do something small to have some ability to help her, it’s only my honor to do so.”

Cutler of American University told JTA that the destruction of so many Ashkenazic bloodlines in the Holocaust makes the likelihood of finding a bone marrow match “like finding a needle in a haystack.”

Cutler added that she was aware of the bone marrow issue because of years of advocacy by Gilson and others, but it was different now that a close friend was suffering. “It became a very concrete thing to me,” she said.

The last bone marrow registry drive among Washington-area Jews was in 1989, when a young Jewish woman, Allison Atlas, was diagnosed with leukemia. Atlas was only 20 when she was diagnosed, and she died soon afterward, but her struggle drew massive interest and led to the registration of many potential donors. But, more than two decades later, many of those registered donors are now 60 years of age or older – the maximum age for joining the national registry.

Easing the Pain

Ethan Gura doesn’t remember his sister. Still, he cannot forgether. He can’t forget that Rebecca Alexandra Gura died in 1991 after afour and a half year battle with leukemia. She was then six yearsold. He was three.

Now, at age 9, Ethan is a veteran of various therapies, alldesigned to help him deal with his anger and sense of loss. We mightwonder why someone who faced bereavement so young would continue todwell on it. But Ethan’s earliest recollections are of his parentsleaving him with a babysitter so they could spend hours by hissister’s hospital bed. Their grief is still fresh in his mind, as isthe fact that “they didn’t have time to spend with me.” And he can’tshake the fear that someone else in the family — his parents,himself — might get sick and die. His anxieties have affected hisschoolwork, as well as his interaction with others.

This past summer, the family rabbi suggested a new possibility forEthan: a support group run through the Children’s Bereavement Programof Jewish Big Brothers of Los Angeles.

The Big Brothers organization, which has been in the L.A. areasince 1915, has traditionally focused on the children of singleparent families. But since 1994, it has been reaching out to Jewishyoungsters who have suffered the death of a loved one. Under thedirection of Julie Gould, a licensed clinical social worker, thesekids come together for eight weeks of intensive sessions in whichthey use art, games, and storytelling to get a handle on theirfeelings.

The groups are limited to Jewish children because a discussion ofJewish burial and mourning customs is part of the mix. The mainthrust of the group is not to endorse the Jewish way in death andmourning (to borrow the title from Rabbi Maurice Lamm’s classic bookon the subject). Rather it is to help children lessen their ownfeeling of isolation by showing them that others, too, are strugglingto cope with similar emotions. Another key goal is to give childrenthe tools to move beyond their loss.

At the end of his eight-week program, Ethan seemed eager to sharewith me what his bereavement group was like. He joined in willingly,because “I had so many feelings I couldn’t get out. I didn’t want tobe sad all the time.” But how did he feel about being grouped withchildren who ranged in age from six to 12? On a school playground,kids of different ages don’t normally mingle in friendly fashion. Butwithin the group Ethan found a common bond: “They all had somethingthat was sad and different about them . . . they had the samesadness.” This despite the fact that their losses were not identical.Two children had lost parents; one was mourning a dead grandfather.Ethan matter-of-factly explained that one girl’s mother had died fromtaking drugs; one boy’s best friend had succumbed to a brain tumor.

Ethan remembers art projects , journal writing, and “coolactivities.” A particular favorite was “jumping on bubble paper toget out our anger.” He also discovered that writing was a therapeuticway to soothe turbulent emotions. At one session, the kids learnedthat death comes in many forms. That day “I drew a picture aboutthings people could die from,” including drugs, guns, and carcrashes, “like Princess Diana.”

A highlight of the eight weeks is the Cloud Trip, which starts aswhat therapists call a “guided imagery exercise.” The kids lie on thefloor, close their eyes, and go on an imaginary journey with theirloved one. They ride in a vehicle of their own choosing (Ethan pickeda motor scooter), and travel through a fantasy environment which maybe their personal interpretation of Heaven. They enjoy one another’scompany in these magical surroundings, then quietly say good-bye.Next the children separate, and on huge sheets of paper, draw thescenarios they’ve envisioned. At length, they re-assemble to sharethe fruits of their imaginings.

When I talked to Ethan, he seemed serene in his acceptance of whathad happened to his sister. He calmly explained how he used to fearthat his mother would suffer Rebecca’s fate, but that now heunderstands better how such things work. He’s planning to tell hisyounger brother about Rebecca, but sagely notes that Alexander, atthree, is still too young to comprehend that death is a part of life.Maybe when he’s four or five. . . .

I doubt (as do Ethan’s parents) that the Jewish Big Brothersprogram will wipe away all of his anxieties. There is, for one thing,no money budgeted to follow up on a child’s progress six months afterhis group has held its celebratory last-session pizza party. But itseems clear that Big Brothers has given Ethan a soothing newperspective on something that (in the words of his father Dennis)”he’ll be processing till he’s an adult.”

Bereavement is very much in the news as I write this, and thebroad consensus is that the stiff-upper-lip approach to loss is nothealthy for anyone. It’s encouraging that the Jewish traditionsanctions the sharing of sorrow: Rabbi Lamm’s “The Jewish Way ofDeath and Mourning” in fact makes clear that Judaism encourages openexpressions of grief, within the context of the ancient rituals. ButLamm’s book, like most others which discuss death from a Jewishperspective, is no help to a child who’s looking for ways to copewith an adult-sized sorrow. I’m glad that Jewish Big Brothers hasstepped forward to help children like Ethan acknowledge their painand move on.

Beverly Gray writes about education from Santa Monica.

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