Today’s high-tech, high-touch support organization
By Denise Portner
In 1994, Valerie Kraus was diagnosed with Stage 2 breast cancer. Although it doesn’t seem that long ago, there were few resources available to women to address their concerns at the time.
“All I wanted was information, and I had a horrible time finding it,” says Kraus, now 66, of Philadelphia and South Carolina. “We had a computer then, but my searching abilities combined with the state of the Internet was pretty minimal.”
And so, to get the information she sought— about side effects, how long to stay on Tamoxifen, and how to live a healthy life post-diagnosis—Kraus turned to her doctor, Marisa Weiss, who sent her to the library of a new organization she had started—Living Beyond Breast Cancer (LBBC).
“I was 43 with young kids and everyone else was older,” Kraus said, adding that it wasn’t until she attended LBBC’s first conference that she found the support she sought. Fast forward to 2017, and while there is still work to be done, LBBC continues to provide a much needed support system for those who are impacted by breast cancer.
DANA DONOFREE was diagnosed in 2010 with breast cancer at age 27. After a bilateral mastectomy with implant reconstruction, she was unable to find a bra that fit other than a sports bra or a camisole. Armed with a degree from Savannah College of Art and Design and a determination to have beautiful lingerie back in her life, Donofree refocused her successful fashion industry career on designing, launching, and growing AnaOno, a line expressly for women who have had breast cancer.
In the Internet age, Donofree, who serves on the board of directors of LBBC, still sees a need for “high-touch” organizations like LBBC where women affected by breast cancer can get together at a conference, a yoga event, or for a simple walk, to share a story or offer a hug.
“Being diagnosed so young felt very isolating. I was faced with questions that could not be answered by the women sitting next to me in the chemo chairs, because my life was in a different place,” Donofree said. “Advocating for others is important to me because I want to make sure that no one else diagnosed young feels alone or ill informed about their diagnosis. By attending group events like our Metastatic Conference and Annual Conference, not only can I connect to other women, I also get to help by answering their questions. And, with my lingerie and loungewear line AnaOno, I get to dress them and help them feel beautiful after their surgeries.”
Having marked its 25th Anniversary in 2016, LBBC has grown to become a national organization serving more than 500,000 women (and men) with a trusted source of information and a community of support via multiple platforms. Its mission is to ensure that no one diagnosed with breast cancer feels alone or uninformed.
Whether a person affected by breast cancer is recently diagnosed or decades beyond, whether in her 20s or her 80s, whether she is dealing with early-stage or metastatic cancer, or is a caregiver, LBBC helps women navigate their options.
In partnership with a medical advisory board that includes oncologists from most of the country’s major cancer centers, LBBC’s staff of 30 and a national volunteer corps of over 300 enable the organization to serve people affected by breast cancer with multiple touchpoints through national conferences, webinars, publications, a peer-staffed Helpline, social media, an award-winning blog, and a multi-city yoga event—all at little or no cost.
CEO Jean A. Sachs, MSS, MLSP, has led the organization since 1996, growing LBBC’s annual budget to over $5 million. Under her watch, LBBC has secured 4-star Charity Navigator status for the past 12 years as well as consecutive grants from the Centers for Disease Control to further develop programming for young women. A founding member of the Metastatic Breast Cancer Alliance, LBBC has also taken a leadership role in understanding the needs and developing programming for women with metastatic breast cancer, who often feel isolated from the rest of the breast cancer population. LBBC was also named in the top 5 nonprofit influencers in breast cancer by Healthline.com, and Sachs’ leadership was recognized in 2014 when she was named Breast Cancer National Leader of the Year by Breast Cancer Wellness magazine.
“Today’s breast cancer diagnoses and treatments are more complex and individualized, and patients need more guidance in understanding their options and making decisions,” Sachs says. “It’s a lot to ask of someone who has just been diagnosed with cancer to make life-changing decisions that can involve mastectomy, early menopause, fertility issues and more. Part of the support we offer is giving women the questions to ask and matching them with someone who has been in their shoes.”
In addition, LBBC has reached out to underserved segments of the population with specialized publications for African American women, men with breast cancer, members of the LGBT community, and non-native speakers. LBBC recently translated The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed into the five most commonly spoken languages in the United States after English—Spanish, Chinese, Vietnamese, Tagalog, and (coming soon) French.
LBBC was at the forefront of advocating for women with Stage IV breast cancer, whose cancer has spread from the breast and will be in treatment for the rest of their lives. LBBC’s groundbreaking 2006 “Silent Voices” white paper and innovative “Hear My Voice” advocacy training program have built community and empowered women living with metastatic breast cancer (MBC) to use their social networks to raise awareness and influence policy, such as increased funding for MBC research.
Over the years, LBBC has embraced the Internet and social media, creating online communities, giving women a voice on its Facebook page and award-winning blog, and offering interactive webinars attended by hundreds. Its branded Breast Cancer 360 panels that are simulcast on Facebook have addressed issues including nutrition, triple negative breast cancer, and relationships and intimacy.
Through it all, LBBC has resolved to maintain the “high-touch” character of its early days. Travel grants bring conference attendees together to meet with peers and oncology professionals one-on-one, and anyone who calls LBBC’s Helpline can count on a knowledgeable, compassionate voice on the other end. LBBC has held its “Reach & Raise: Yoga for a Reason” event in Philadelphia since 2005, and has expanded this signature wellness event to cities including Washington, Denver, Ft. Myers, and Kansas City. This October, LBBC is holding its annual fall conference and yoga event in Memphis, a city burdened by the greatest racial disparity in breast cancer mortality rates in the country.
“We are committed to learning how to reach and better serve the populations who need us most,” said Laura Kowal, MPT, JD, chair of the LBBC Board of Directors and general counsel for the Nemours/Alfred I. duPont Hospital for Children. “Although we began our journey in Philadelphia, we are hoping to learn from our outreach in Memphis this year and build on it to connect to other communities who can benefit from LBBC’s services. Every community is different and we rely on local volunteers to help us make the necessary connections.”
LBBC is constantly evolving to meet the changing realities of a breast cancer diagnosis for people of all circumstances, with its unique balance of high-tech and high-touch. It is working to extend that reach to as many women as possible.
“I remember the discussions we used to have about whether LBBC was a local or a national organization, and now they’re really an international organization,” Kraus says. “It’s an exceptionally valuable organization with trusted information and it provides so many levels of support for people who are diagnosed and throughout the rest of their lives.”
For more information or to access the services of Living Beyond Breast Cancer, visit LBBC.ORG or call (855) 807-6386.
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