Ounce of prevention – Couple educates about gene testing for breast cancer

By Byran Blessey
Jewish Journal
July 25, 2006

Lori Sklar wants others to avoid what she went through.

Because of an inherited genetic mutation, Sklar was at a greatly increased risk of contracting cancer. After being proactive about her health for many years, she was diagnosed with breast cancer in October, 2003.

Sklar went through many hospitalizations, due to complications. Eventually, she underwent a stem cell transplant, which saved her life.

Lori Sklar and her husband, Bill, who live in Boca Raton, created the organization Genetic Information to Stop Breast and Ovarian Cancer because they thought making people aware of the genetic predisposition to cancer could save other women from a similar ordeal. The couple hopes to educate others, not only about the concerns, but also about an available test that identifies the mutation.

Even after Lori Sklar was diagnosed with breast cancer, doctors discouraged her from being tested for the genetic mutation. But she insisted. She says it important to educate women about the BRCA gene as a preventative measure, because it impacts one's treatment.

"We feel that if you can educate a woman, get her tested and have her take the necessary medical measures, you're not talking about one woman; you're talking about future generations," she says. "So, it's a strong passion for Bill and me. As it's said in the Talmud, 'He who saves one life, it is though they saved the entire world'. We don't want my story to be anyone else's story."

The organization features two Web sites, www.jacobintl.org and www.reachglobal.org, which focus on informing the public about the risks of the gene mutations and the resources to help people seek evaluation or treatment. The sites differ somewhat because one addresses the risk to the Ashke-nazi Jewish population, while the other deals with the general population.

"The risks involved, relative to Jews, are far greater: 1 in 40 versus 1 in 500 in the general population of women," Bill Sklar says. "So we separated it, in part, so we could accurately depict the level of risk for Ashkenazi Jews, versus the general population."

As part of the organization, there is an advisory board, made up of doctors in the fields of oncology, specialists in genetic testing, religious leaders and business-people. The Sklars chose doctors who they thought the best in their respective fields and who had, as part of their specialties, a component of genetics testing. The Sklars, who have been active members of Congregation B'nai Israel in Boca Raton for 14 years, put the congregation's Senior Rabbi Richard Agler and Cantor Stephanie Shore on the board.

Dr. Louise Morrell, the medical director at the Boca Raton Community Hospital Center for Breast Care, says Lori Sklar contacted her to be on the board because of her expertise in the field of breast cancer work, especially the area of genetic counseling and prevention.

"Although most breast cancers are random events, there is a portion of people who develop breast cancer that is inherited specifically from a mutation in what is known as the BRCA gene, which puts those individuals at a much elevated risk of having ovarian cancer as well," she said.

Morrell says the Sklars' organization has made a difference in getting people to seek information and, in some cases, treatment.

"I can tell you, with certainty, that the work that Lori has done has led to women seeking testing and prevention, and has probably saved lives," Morrell says. "[Because of] the work the organization has done, that she has done personally, patients have come [to be tested], and they've found that they have the gene; they've taken preventative steps."

Shore says Lori Sklar came to her when the Web site was being created, to talk about the healing power of music. Shore says Sklar decided to use her original compositions on the site, as a source of comfort for people who were researching the serious topics.

"[Lori] wanted to make sure that when people clicked on the Web site, that there would be some kind of healing music, something that would be soothing and refreshing, so that when people were reading about these topics that were very, very emotionally charged and sensitive subjects, they would have some sort of healing, soothing melody in the background," Shore says.

The Sklars say their hope, and the ultimate goal of their organization, is to offer help for those who may be affected now, as well as for generations to come.

"Our organization is for this generation and all that follow in its footsteps," Lori Sklar says. "We can give a gift of a longer life to someone who carries this mutation - a gift that we hope can be passed down to other generations."

For more information, visit www.jacobintl.org or www.reachglobal. org.