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2004 & 2005


At a time when women and men with metastatic breast cancer were neither recognized nor represented by local and national breast cancer communities, Nina Schulman and Jane Soyer were the first to speak out. With courage and determination, they began the uphill climb to change the status quo and give a voice to our isolated and underserved population. 

 

They joined forces with Judith Cohen, a college friend of Nina's, with experience in non-profits as founder of The Patient Advisory Council For Rheumatoid Arthritis Patients ... a population similarly ignored and isolated. Together they set out to introduce a unique concept - recognizing and meeting the unique needs of the metastatic population. Nina and Jane attended major national breast cancer meetings, armed with flyers announcing the plan. They were amazed at the dramatic response from other mets patients attending those meetings, who longed for an opportunity to speak for themselves and be recognized in the breast cancer community.

Despite the many obstacles and misunderstandings, they persevered, and ultimately created the Metastatic Breast Cancer Network (MBCN), an advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer. With pro bono legal help, MBCN became an official 501 (c)(3) organization with a powerful mission.


2006


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 Sloane-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.


2007


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! These shirts remain free to all walkers.


2008


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. 

 


2009


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.


2010


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 and continue to offer them at no charge.

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.


2011


MBCN now has over 1800 members in the US and Canada, and members in 22 other countries around the world. We get emails from doctors, caregivers, advocates, researchers, and patients seeking information, connection.... and sometimes, just a hand to hold.

Please take a look at our NEW website! 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 are in the process of establishing an MBCN board, comprised of a majority of metastatic members. Michele Przypyszny has stepped up as the new President. Although Michele has never had breast cancer, her understanding, scope of knowledge, warmth, and heartfelt connection to MBCN makes her a perfect choice to strengthen our mission.

MBCN is and will remain the voice of the metastatic population.... always... working to fulfill Nina's extraordinary vision.

 

 

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