MBCN was founded in 2004 by Jane Soyer and Nina Schulman. When diagnosed with advanced breast cancer, they experienced feelings of isolation from the groups established to provide support to people living with breast cancer. They felt the stigma of being a ‘failure’ in the breast cancer community because they had advanced breast cancer. Their belief that cancer should not be viewed as a disease from which one is either a ‘survivor’ or to which one has succumbed, fueled their desire to advocate for change. They decided to create an organization that supported those living with this incurable disease.
Upon Jane’s death, Helaine Fink stepped up to assist. She created a logo for MBCN and joined Nina and Judith in planning the first-ever metastatic breast cancer conference at Memorial Sloan-Kettering Cancer Center (MSK) in NYC.
A few months later, Helaine died, and Nina turned to her support group at MSK for help. Jackie Spielberg, Marilyn Frix and Ellen Moskowitz stepped forward to assist in publicizing, organizing and planning the conference.
Crucial to the conference planning was Nina’s concept of having mets patients speak for themselves – sharing their experience in living with the disease, sometimes for many years – as they introduced physician and scientist presenters.
With the additional support of Roz Kleban, a social worker at MSK, Loretta Mikulski, founder of the South Jersey Breast Cancer Coalition (SJBCC), and Judith’s and Ellen’s continued support under the leadership of Nina, the first-ever metastatic breast cancer conference took place on November 18, 2006. Dr. Larry Norton presented and served as program chair. The auditorium was filled — 300 seats were occupied — proof again that those with metastatic breast cancer were prepared to empower themselves, speak for themselves, and demand recognition. Patients, caregivers, and medical professionals from the tri-state area also attended our first metastatic conference.
Within a month, Banu Ozden, who had attended the conference, offered to participate by building MBCN a website. Being on the Internet got us on the map!
Within weeks, people living with metastatic breast cancer found us on the Internet and we began receiving contacts from across the country. New members joined and we soon had a membership of 350 – stretching way beyond the boundaries of New York City! Shortly thereafter, we found that social workers, health care providers and family members were seeking information on our website.
A committee member, Amy, suggested we come out of hiding during “pink ribbon month” and she contacted Mayor Bloomberg’s office to request a proclamation declaring October 13 (the day of a metastatic program sponsored by MBCN, YSC and NYU Hospital) to be Metastatic Breast Cancer Awareness Day in New York City.
We let our members know and in almost no time at all, Living Beyond Breast Cancer got a proclamation from the mayor in Philadelphia, PA, and Ruth Gesmer Silverman in Buffalo Grove, IL and Meg Fels in Princeton, NJ. followed suit, resulting in similar proclamations for their cities.
We held our second National Conference at MD Anderson Cancer Center in Houston, Texas, hosted by Dr. Gabriel Hortobagyi. This was a two-day conference, which drew a full house in attendance.
We provided all attendees with free metastatic t-shirts – encouraging them to wear them in cancer walks to get that word ‘metastatic’ out there!
We published and began distribution of our first brochure: Diagnosis- Metastatic Breast Cancer… What Does It Mean For You? Shortly thereafter, Nina died and Ellen Moskowitz stepped up as President, Suzanne Hebert as Vice-President, and Lisa Lesko as Secretary.
The decision was made to email blast all 600 members asking their thoughts regarding seeking a proclamation from their mayors to proclaim Awareness Day for us in their cities. Within 48 hours, we were inundated with over 150 supportive replies. All across the country, people with stage IV breast cancer stepped up and spoke out and felt empowered! The movement kept growing and growing, and within two weeks, we had 900 members.
With the skill and dedication of Susan Davis and Shirley Mertz, we had Advocacy Day. They organized an advocacy team to travel to Washington, DC to speak with members of the U.S. Senate and House of Representatives to educate them and bring awareness of our unique issues living with metastatic disease. As a result, Metastatic Breast Cancer Awareness Day was proclaimed on a NATIONAL level! This movement continues to spread – with Canada and the UK also recognizing their metastatic population with similar proclamations.
We held our third National Conference at Dana-Farber Cancer Institute, in Boston, MA, hosted by Dr. Eric Winer. It was such a fabulous success that we returned five months later to fill the auditorium for “Open Conversations on Metastatic Breast Cancer,” with Drs. Winer, Nancy Lynn and Ian Krop. Two weeks later, we filled the MSK auditorium in New York City, when Larry Norton hosted us for an afternoon discussion about metastatic breast cancer.
To help support our national membership, and in response to requests, we gathered information from our members on metastatic support groups across the country – they are few and far between. To keep our members informed, we continually post news relevant to the metastatic population. To better educate our membership, we post videos and audios from our conferences and offer our brochure free. To help develop awareness of the disease, we continue to offer our metastatic t-shirts and MBCN attends conferences where we have the opportunity to distribute our materials and speak with medical professionals and other breast cancer groups.
We developed our metastatic kit – full of needed information as we are first diagnosed and continue on our metastatic journey…. hopefully for a long time! How many of us left the oncologist’s office upon getting our diagnosis with a scan report in one hand and an anti-anxiety prescription in the other? There was little to no information offered us — nothing to hold on to with facts and support regarding stage IV breast cancer. To meet this need, and in collaboration with numerous members across the country and several medical professionals, we developed these kits.
In October we held our fourth National Conference at Indiana University Simon Cancer Center. Both Drs. George Sledge and Kathy Miller hosted us. It was our first venture into the Midwest! The conference was a major success drawing close to 300 people in attendance.
We also ventured into social media, creating a Facebook Page, which was met with enthusiasm.
MBCN membership grew to over 1800 members in the US and Canada, and members in 22 other countries around the world. We received emails from doctors, caregivers, advocates, researchers, and patients seeking information, connection…. and sometimes, just a hand to hold.
We launched a redesigned website in the beginning of the year. It took over a year to get this completed.. and would have taken longer if not for the valuable assistance from member Ginny Knackmuhs. Our website will always be a work in progress because we intend to keep you always informed of the latest news and information.
We established a new MBCN board, comprised of a majority of metastatic members. Michele Przypyszny stepped up as the new President. Although Michele had never had breast cancer, her understanding, scope of knowledge, warmth, and heartfelt connection to MBCN made her a perfect choice to strengthen our mission.
In August 2011, Susan Davis died. Susan, a former MBCN board member, was a tireless advocate who worked with MBCN, Metavivor and several other groups.
Our National conference was held at the Johns Hopkins Avon Foundation Cancer Center in Baltimore in conjunction with Lillie Shockney, administrative director and the wonderful clinical and research staff at JHU, including Drs. Stephen Baylin, Leisha Emens and Robert Miller, to name just a few.
MBCA Day activities yielded many interviews, blogs and media stories. We entered the world of Twitter with our MBCNbuzz updates.
MBCN held its 6th annual Metastatic Breast Cancer Conference on October 13 at Northwestern University. The National Cancer Institute’s Dr. Pat Steeg gave the keynote address and was presented with a grant award to further her research into finding treatments to prevent the spread of metastasis. She was the first recipient of the Ellen Moskowitz and Suzanne Hebert Memorial Leadership Award, named in honor of the former President and Vice President of MBCN who both passed away in 2012.
MBCN partnered with LBBC (Living Beyond Breast Cancer) to develop a detailed brochure for those newly diagnosed with mbc, which can be ordered free of charge from our website. For MBCADay, we developed a metastatic advocacy kit (available as a PDF file) that offered strategies to patients and their families on how to bring attention to the needs of mbc patients. We also began an MBCN blog, named MBCN buzz.
Shirley Mertz became President and Ginny Knackmuhs became Vice President and Treasurer.
Katherine O’Brien joined the board as Secretary and Public Relations Chair and concentrated on increasing our social media presence.
On June 23, 2013, long-time MBCN volunteer and administrative assistant Judy Letvak died.
In late 2013, the Avon Foundation became the administrative home of the new Metastatic Breast Cancer Alliance, with Marc Hurlbert, PhD as Director and Katherine Crawford-Gray as Project Manager. Plans were made to begin a comprehensive survey of research, support and awareness of mbc. MBCN had first discussed the idea for a broad alliance of organizations working to make life better for metastatic patients at our summer board meeting in 2012.
Wanting to reach out to western half of the country, we revisited Houston, Texas and held our 7th Annual Conference at MD Anderson under the direction of Dr. Stacy Moulder.
As a founding member of the MBC Alliance, an alliance of 30 organizations, MBCN contributed to the development of the MBC Alliance Landscape Report which established goals for the future to better the lives of mbc patients.
Former MBCN board member Kathy Coursey-Boes died on February 14, 2014 at age 53. On July 25, 2014 we lost another former board member: Joani Gudeman died at age 50.
In September, MBCN organized a very successful and well-received 8th annual conference at UNC Lineberger Cancer Center for 230 patients and caregivers.
October 2014 saw a great increase over previous Octobers in programs, interviews and awareness of metastatic breast cancer and what it is like for patients to live with the disease. MBCN and dedicated members like you helped this happen.
MBCN partnered this past year with hospitals and other breast cancer organizations/centers to offer face to face and teleconference patient centered programs in Chicago, Boston and New York.
We added a Pinterest page with stories from people living with mbc.
We also reiterated our commitment to metastatic research by dedicating all donations to go to grants for mbc research.
MBCN continued to work with the Metastatic Breast Cancer Alliance, serving on the executive board as well as the working committees on information/services; support and metastatic research.
Our 9th Annual conference was held in October in conjunction with Dana Farber Institute, Susan Smith Cancer Center and Embrace program.
We held several smaller Metastatic Meet Ups around the country including New York and Chicago and plan to increases these shorter programs for next year.
We testified several times before the FDA and will continue our advocacy.
MBCN board member Ginny Knackmuhs died on August 25, 2016 at age 65.