LBBC - Silent Voices No Longer
Our guest for this episode is Jean Sachs, CEO of Living Beyond Breast Cancer (LBBC), who’s overseen and grown the impact of LBBC for nearly three decades. She joined LBBC in 1996 as its first Executive Director and was named CEO in 2008. During that time, LBBC has become a national force in breast cancer patient support and action. Jean’s focus on inclusivity, whether by race, age, geographic location, gender, has meant that LBBC is among the most welcoming patient-focused nonprofit organizations in the United States.
And for people living with metastatic breast cancer, LBBC has become synonymous with that most-important quality: Community. That’s because LBBC’s annual Conference on Metastatic Breast Cancer is one of the largest, if not the largest, gatherings for women and men living with MBC.
LBBC's highly specialized programming for women living with stage IV breast cancer stems from the nonprofit's 2006 release of Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources. In this extensive report, LBBC consultants Musa Mayer, MS, MFA, and Susan E. Grober, PhD, reported their findings from a survey of 618 women living with stage IV disease. The survey focused in great detail on their use of and preferences for services in three domains: information, support and resources. The data revealed insights on the information, support and practical needs of women living with metastatic breast cancer so LBBC could address the gaps in tailored resources for this population.
Thriving Together: 2023 Conference on Metastatic Breast Cancer
This year’s attendance expectations are for 500 in-person and 1500 virtual! The conference began in 2006 and this year LBBC breaks the rules again by making the conference fully hybrid, with one full day of only virtual workshops and gatherings, followed by a weekend of simultaneous fully virtual and in-person conversations, lectures, exhibitor booths, and opportunities to connect both online and in-person.
Happening from April 26 to the 30th, LBBC’s annual conference on metastatic breast cancer brings in experts like Nancy Lin, Don Dizon, Kelly Grosklags, Kimberly Curseen, and more. But, as Jean herself shares, the connections formed in virtual chat rooms and in-person are also part of its history. The LBBC MBC Conference is the birthplace of MetUp, the site of Hear My Voice advocacy training (alums include Julia Maues, Janice Cowden, and Terlisa Sheppard), and where lasting connections that shape how we talk about MBC are formed.
We are so delighted to have Jean with us to talk about Living Beyond Breast Cancer and this year’s conference.
Sprinkled throughout the episode are the voices of our patient advocate friends Stephanie Walker, Terlisa Sheppard, and Kate Pfitzer.
Date and Time
Living Beyond Breast Cancer’s 17th annual Conference on Metastatic Breast Cancer will be held April 28-30, 2023 as a hybrid conference. We will be back in Philadelphia, PA in-person AND virtually via our online conference platform.
Location
Virtual and In-Person
The Hilton Philadelphia at Penn’s Landing 201 South Columbus Blvd. Philadelphia, PA 19106
Cost
In-person attendee: $75
In-person caregiver: $25
Virtual attendee: $25
Virtual registration waiver: $0
Additional Resources
Lessons Learned From The Metastatic Breast Cancer Community by Musa Mayer
Meet the Guests of the Episode
Living Beyond Breast Cancer (LBBC)
Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill our mission of providing trusted information and a community of support, we offer on-demand emotional, practical, and evidence-based content that is meaningful to those newly diagnosed, in treatment, post-treatment, and living with MBC.
Each year over 600,000 people access the LBBC online resources, programs, and communities of support.
Leading medical and research experts from NCI teaching hospitals, and community cancer centers review all content, present at educate programs, advise on content, and provide insight to the MBC community with interviews to ensure trusted and vetted information
Starting in 2011, Living Beyond Breast Cancer launched its leadership volunteer programs, becoming one of the first breast cancer organizations to train volunteers with the specific goal of advocating for change by focusing on elevating the voice of the patient experience. To date, LBBC has trained over 500 leadership volunteers.
LBBC is the only nonprofit breast cancer organization in the US that provides a “train the trainer” program for oncology nurses and navigators about the unique issues facing young women diagnosed with breast cancer.
Living Beyond Breast Cancer knows that finding ways to support emotional health is just as important as getting the right cancer treatment.
Its blog has been named one of the Best Breast Cancer Blogs by Healthline since 2012. It is home to personal stories of people impacted by breast cancer, including the voices of those often underrepresented such as people living with metastatic disease, young women, Black women, and men with breast cancer.
The Breast Cancer Helpline has answered calls from people during their hardest days for almost 25 years.
Since 2006, LBBC has awarded over 2,700 grants and distributed over $2,230,000 to women in treatment so they can focus on their health instead of their bills. In 2020, LBBC expanded their Living Beyond Breast Cancer Fund to serve the national community, many of whom were financially impacted by COVID-19 and will award 350 grants.
Jean Sachs MSS, MLSP, Chief Executive Officer, LBBC
Jean has devoted much of her professional career to educating and supporting those impacted by breast cancer. A social worker by training and at heart, she values making time to connect one-on-one with women when they are struggling with their breast cancer diagnosis. This keeps her grounded and deeply connected to the mission.
As CEO of Living Beyond Breast Cancer, Jean guides the daily and long-term success of one of America’s most trusted breast cancer charities. Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008.
Living Beyond Breast Cancer assists more than 600,000 people affected by breast cancer every year by providing free, nationally recognized programs and services, including conferences, webinars, publications, peer support, and more. The organization has been awarded a four-star rating by Charity Navigator for 17 years, and in 2018 earned the Platinum Seal of Transparency from GuideStar. Both honors recognize nonprofit institutions that exemplify superior fiscal management and transparency.
Jean's compassion as a social worker is matched by her strong business and fundraising skills. She has grown LBBC’s annual budget from $100,000 to $6,000,000, has diversified the organization’s revenue sources, expanded staff capacity and diversity, and strengthened and expanded LBBC programming. She has seen the organization through the financial crisis of 2008, a global pandemic, and is now navigating the organization through uncertain times. Her skillful commitment to LBBC’s vision — a world where no one impacted by breast cancer feels uninformed or alone — has cultivated LBBC from a small, regional nonprofit to a vibrant, nationally prominent organization.
Under Jean’s leadership LBBC’s excellence has been recognized through its receiving a three-year, $2.25 million grant from the National Philanthropic Trust; twice receiving a multi-year grant from the US Centers for Disease Control and Prevention; and 7 consecutive years named Best Breast Cancer Blog by Healthline. Jean was named Breast Cancer National Leader of the Year by Breast Cancer Wellness magazine in 2014.
Jean brings a lifetime of women’s advocacy experience to her role as CEO as a past legislative aide in the PA State Senate, a staff member at WOMENS WAY, and director of development at the National Breast Cancer Coalition.
Jean lives in Philadelphia where she is a proud former member of the board of directors for Friends of the Wissahickon (FOW), current member of FOW’s Budget and Finance Committee, and a volunteer with SHARE Food Program.
Kate Pfitzer, Director of MBC Programming, SHARE
Since 2019 Kathleen has been actively involved with advocacy as a Metastatic Breast Cancer peer volunteer at SHARE Cancer Support. She began her volunteer work as a dedicated MBC helpline volunteer and MBC peer then added support group facilitator as well as OUR MBC Life podcast host and producer to her roles. Kate believes there is nothing better than being surrounded by peers “who get it.” She feels strongly that no-one with MBC should feel alone and everyone should have access to support. Kate is passionate about the needs of the community and strives to educate and empower people to advocate for the best possible care and quality of life.
Kate recently accepted a position of Director of Metastatic Breast Cancer Program at SHARE Cancer Support. She is excited to use her science background as well as her MBC patient experience to continue the success of the metastatic breast cancer programs and is committed to developing new programs with the goal of improving patient experience and survivorship.
Kate graduated with honors and earned a Master of Science degree in Healthcare Policy and Management, Community Health Education and Planning, an Advanced Certificate in Healthcare Management, and a Bachelor of Science degree in Occupational Therapy.
Terlisa Sheppard
Terlisa is a 4-time breast cancer survivor of 24 years. She was originally diagnosed in November 1998, with stage III, (HER2+, ER+, PR+), breast cancer at the age of 31 years old, and while 8 ½ months pregnant with her second child. She has been living with stage IV metastatic breast cancer for 21 years and has had metastases to her bones, lungs, liver, spine, abdomen, and brain.
Terlisa is the mother of two beautiful daughters, who continue to give her strength and the daily motivation that she needs to get through each day, no matter how hard it might seem at the moment. She is a patient advocate and a fighter, not only for herself, but for those who share her similar fate. Her advocacy involvement includes one-on-one mentoring with breast cancer patients and their families, by spreading hope and compassion through their diagnosis. She continues to spend countless hours volunteering and raising awareness for the need for more funding of metastatic breast cancer research. Through her very own journey, she has inspired others to fight through their diagnosis and live their best life, moment by moment.
Stephanie Walker, RN
Diagnosed in July 2015 with de novo MBC. A Registered Nurse with close to 40 years of clinical practice and secondary teaching experience. Her experience has been pediatric and adult critical care working in level 1 trauma centers to critical access hospitals. The last 15 years of nursing was with End of Life/Hospice care. Only aware of MBC advocacy 3 years after diagnosis, she has pushed for rural equality, equity in breast cancer. She is a member of MBC Alliance (in which she is project lead on the BECOME initiative (Black Experience of Clinical Trial and Opportunities for Meaningful Engagement ), LBBC Helpline/HMV volunteer and SG Komen volunteer.
She is married and lives in Tarboro NC with husband John and rescue dog Rex, advocating for men and women in rural areas as my own for equal access to quality healthcare , treatment modalities, and resources keeps her busy .
