October 28, 1999
The Force Behind ‘The Group Room’
Some people take lemons and make lemonade. Selma Schimmel took a diagnosis of cancer and turned it into a vast support network which has changed the lives of thousands of people.
Schimmel, 45, is the creator and executive producer of "The Group Room," the only nationally syndicated radio call-in show for cancer patients, their families and friends. The show grew out of Vital Options, a support group Schimmel started for young adults with cancer 15 years ago, following her own diagnosis of breast cancer. At the time, she was only 28 years old.
"I was a classic example of a delay in diagnosis, because doctors are not necessarily looking for cancer in young people like they do in older people," Schimmel said. "Fortunately, Vital Options raised awareness of the prevalence of cancer among people ages 17 to 40, and now there are support groups across the nation."
Schimmel was recently honored by Hillel at Valley and Pierce Colleges as one of their "36 Distinguished Individuals" who have made a difference in the Jewish community. In addition to numerous speaking engagements, she currently serves on Assemblyman Robert Hertzberg's Women and Family Advisory Commission and works with the UCLA School of Medicine Doctoring Curriculum Program, assisting in a program to sensitize physicians-in-training to the emotional needs of their patients.
As if the radio show, public service and personal appearances aren't enough, in May, Schimmel saw the release of her book, "Cancer Talk: Voices of Hope and Endurance from 'The Group Room.'" Chapters outline the different areas of life affected by undergoing treatment for the disease, from diet and hair loss to the doctor-patient relationship and dealing with cancer in the workplace. It has already sold more than 11,000 copies in its first run.
For a key chapter addressing the spiritual side of being a cancer survivor, Schimmel sought input from her father, Rabbi Meier Schimmel, founding rabbi of Congregation Beth Meier in Studio City. Selma credits her father with giving her the strength to survive cancer and to help others; they became especially close during her student years at UCLA when, a year prior to Selma's diagnosis, her mother died from a swift and brutal form of ovarian cancer.
"My parents were supposed to leave for Israel on a sabbatical and within weeks she was diagnosed and died," Schimmel said. "My father then had to cope with my getting cancer. He's had to go through a lot in his life but he's always taught me by example that the greatest mitzvah is helping the sick. When I started Vital Options, he was the first one I went to and he opened up the synagogue to us. I knew a few other young adults at UCLA who were also undergoing cancer treatment and our first group met in Beth Meier's social hall. Then an article ran about us in the Los Angeles Times and the group just exploded."
Schimmel ran the group for almost ten years. By 1993, the combination of an economic recession, restricted funding going toward more high-profile diseases and the rise of other support groups for young adults took its toll on Vital Options. Seeing the growing trend toward Internet use and the explosion of online chat rooms, Schimmel decided to take the group in a new direction and launched "The Group Room," which, in addition to its radio broadcasts, also "meets" online via its website (see below for details).
In producing the show and the website, Schimmel relies on not only her vast network of contacts established over 15 years in the field, but also her team of researchers including Vital Options' Public Affairs Director Eric Rosenthal and Group Room Production Assistant Michelle Rand. Together they provide the most current information on advances in cancer research.
Regulars who share the airtime on "The Group Room" include medical advisors Dr. Michael Van Scoy-Mosher, co-chief of hematology and oncology for Cedars-Sinai Medical Center, Dr. Leslie Botnick, a radiation oncologist and CEO of Valley Radiotherapy Associates Medical Group, and Halina Irving, a licensed therapist in private practice. Prior to appearing on "The Group Room," Irving ran the Vital Options support group for nine years and is both a breast cancer and Holocaust survivor.
"The universal concern is the fear of recurrence - will I remain cancer-free or not?" Irving said. "For young people, there are additional issues, for example, social isolation. When you are in your 60s, you are likely to have friends and colleagues who have been diagnosed with cancer, but among young people there is less support. Also, young cancer patients are just beginning their professional and financial lives; some are also starting families and a diagnosis of cancer interrupts all that."
For these reasons, Irving advocates finding support from outside the patient's immediate family, whether in therapy or by participating in programs like "The Group Room."
"Even though patients get love from their families, they get the greatest support from people who are going through what they are going through," she said.
Irving said the attitude towards cancer has changed markedly in the 10 years since her own diagnosis.
"There is much more openness, more freedom to speak about cancer," she said.
"We just need to get the word out, especially about clinical trials. I am alive because of someone's willingness to participate in one of these trials. We need to create a dialogue so people will understand they are not guinea pigs, that they will not be left without treatment. We have seen dramatic advances in the treatment of childhood cancers because 70 percent of children with cancer are involved in clinical trials. Yet only two percent of adults with cancer participate, mostly because doctors cannot keep track of all the studies. That's where "The Group Room" can help."
"The Group Room" is broadcast locally every Sunday between 1 p.m. and 3 p.m. on radio station KRLA 1110-AM. For national air times, call (818) 788-5225 or check out the website at www.vitaloptions.org.
Creating a Cancer Clearinghouse
What if you or someone you love were recently diagnosed with cancer? Wouldn't it be a relief if you could go online and simply look up every ongoing clinical trial and all the current information about your particular form of the disease in a database?
That is the mission of Gary Kramer and his family, who are building the Joyce Foundation. Named for Joyce Kramer, Gary's mother and a Jewish day school teacher who lost her battle against non-Hodgkin's lymphoma in 1996 at the age of 52, the Foundation was created to provide information both via a fully-staffed hot line and the Internet.
Kramer, a longtime San Fernando Valley resident and owner of two ComedySportz franchises, admits it is an ambitious project.
"There are about 2,500 clinical trials going on at any one time, more than half of which are sponsored by the National Cancer Institute," Kramer said. "There's no way any one doctor can keep track of all those trials but that is what we will be doing; presenting information that is up-to-date and accurate."
Kramer said the Foundation anticipates about half of the database will cover clinical trials. The other half will address conventional treatments such as chemotherapy and radiation along with their side effects and possible conflicts with other treatment protocols, as well as information on diet and experimental drugs. He emphasizes that the Foundation will give no recommendations, only information.
"We simply want to give people all the options, in language they can understand," he said.
Since establishing the Foundation in 1997, the Kramer family, which hails from New Jersey, has recruited prominent local physicians for the project's board of directors. Author and Harvard Professor Stephen Jay Gould also serves on the Foundation's honorary board.
While family members back East seek medical specialists to review data and provide referrals, Gary Kramer is busy recruiting donations. The Foundation has been able to raise $75,000 over the past year, primarily from private donations and fundraising events by ComedySportz' improvisation clubs and Le Tip, a business networking group. So far, the Foundation has not been able to reach the desired goal of $500,000 to launch the database. "Right now the resource we need most is money. It is very expensive to have the staff to provide the services for what we're trying to do and you can't hire staff until you have the funding," Kramer said. "But the need is so dire and there is nothing like it out there. For $500,000 we can save literally thousands of lives."
Interested contributors can send donations to: The Joyce Foundation, P.O. Box 223, Lake Hiawatha, NJ 07034. For more information, call (888) 755-0100 or visit the organization's website at www.cancerinfo.org -- W.M.