Breastcancer.org strives to be a place where anyone concerned about or diagnosed with breast cancer can come to find the information and support they need, when they need it the most. But because breast cancer can affect anyone regardless of age, cultural experience, and access to care, being an “all things to all people” resource can be a challenge. That’s why we’re happy to recommend other organizations that can help our readers who are looking for information that is more specific to their lifestyle and experience.
Sharsheret was founded in 2001 to address the specific information and cultural needs of Jewish women who are at high risk of breast cancer or who have been diagnosed with or are living with breast cancer. Women of Ashkenazi (Eastern European) Jewish descent are at a much greater risk of carrying a BRCA genetic mutation than the general population — 1 in 40 compared to 1 in 345. Carrying a BRCA gene mutation (BRCA1 or BRCA2) increases a woman’s risk of being diagnosed with breast cancer from about 12% over her lifetime to up to 80% over her lifetime. Women with an abnormal BRCA gene are also more likely to develop breast cancer at a younger age and in both breasts than women without an abnormal BRCA gene.
I recently spoke with Elana Silber, director of operations, about what Sharsheret has to offer.
Sharsheret is a national nonprofit breast cancer organization open to all women and men, with an expertise in young women and Jewish families. They offer 12 national support and education programs addressing all stages of concern about breast and ovarian cancer, from those at risk to those in treatment and beyond. With a full-time certified genetic counselor on staff, the organization also has expertise in breast cancer and ovarian cancer genetics.
The peer support network is Sharsheret’s foundation program, linking women with similar diagnoses and experiences. Sharsheret keeps a database of volunteers who have agreed to be matched up with women looking for support. After a woman reaches out to Sharsheret, a member of the staff clinical team contacts her, and they discuss her situation and what kind of support she needs. The team member then searches the Sharsheret database for someone who has had a similar experience. After confirming that the match volunteer is available to offer her support, the team member puts both women in contact with one another. (Sharsheret means “chain” in Hebrew; the tailored peer support network matches made between women create and strengthen the chain of support to help thousands of women and families facing breast cancer and ovarian cancer.)
Peer supporters are trained by Sharsheret’s clinical team and offer the individualized support and cultural understanding that many women are unable to find in their own communities (Sharsheret peer supporters do not offer medical advice or medical referrals). For example, Sharsheret was approached by a woman in her 30s who was married to a rabbi and mother to four children. She was newly diagnosed, struggling with how to balance her duties to the community in her role as rabbi’s wife with her desire and need for privacy. Sharsheret was not only able to match her with a woman on the other side of treatment who was married to a rabbi, but a woman the same age, with the same diagnosis, the same treatment, and four young children of her own. Women who have been matched can decide for themselves how much to be in communication — the clinical team checks in periodically to ensure the match is beneficial for both women.
Sharsheret’s clinical team includes a certified genetic counselor, psychotherapist, and social workers who give personalized care through a number of support programs in addition to the peer support network program:
- Thriving Again: This program provides individualized support, education, and survivorship navigation for young breast cancer survivors. Thriving Again features a free customized survivorship kit, complete with resources, healthy cookbook, and workout DVD. Additionally, breast cancer survivors can work one-on-one with a member of the clinical team to create an individualized survivorship care plan to share with their health care professionals. Women can easily fill out an online request form, after which they’ll be contacted by a member of the Sharsheret clinical team. They’ll discuss what sort of information would be most useful, and the clinical team member sends personalized information to the survivor.
- Genetics for Life: Sharsheret’s genetic counselor is available to speak over the phone with anyone who has a strong family history of breast cancer, is concerned about genetic risk, or is managing what their results mean for them and their loved ones. As part of the Genetics for Life program, Sharsheret also offers family conference calls, conferences on different issues around genetics, and the “Your Jewish Genes: Hereditary Breast Cancer and Ovarian Cancer” booklet, which is one of their most popular publications.
- Embrace: Embrace is Sharsheret’s support program for women living with advanced breast cancer or recurrent ovarian cancer. Embrace offers a telephone support group moderated by the clinical team, a monthly teleconference featuring experts in various fields with topics suggested by Embrace program participants, and one-on-one support from the clinical staff.
In addition to the “Your Jewish Genes” booklet, Sharsheret offers five additional booklets in the series, including “Facing Breast Cancer as a Jewish Woman,” “Facing Breast Cancer as an Orthodox Jewish Woman,” “Facing Ovarian Cancer as a Jewish Woman,” and “Thriving Again: For Young Jewish Breast Cancer Survivors.” Order your free booklets.
On the local level, Sharsheret partners with on-the-ground organizations to run support groups and educational events in cities throughout the United States.
To raise awareness in young adults about genetic risk and encourage them to spread the word to friends and family, Sharsheret partners with the fraternity AEPi and sorority AEPhi on college campuses nationwide, as well as Chabad and Hillel, which are Jewish community and student organizations. Schools and universities across the country raise awareness and funds for Sharsheret through a designated Pink Day in February and other initiatives, and Sharsheret offers educational programs to students through the fraternity and sorority, including the Have The Talk campaign. Have The Talk encourages students to initiate important conversations about their family medical history with their parents. Sharsheret is currently working with over 150 schools nationwide.
Sharsheret has served more than 40,000 people over its 12-year history and is kicking off its Bat Mitzvah year – mazel tov! For more information about Sharsheret’s programs and services and to order your free breast cancer survivorship kit, visit Sharsheret.