Ounce of prevention – Couple educates
about gene testing for breast cancer
By Byran Blessey
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
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
"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
"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,
"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
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
"[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,"
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.