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Welcome to our website... a place where the metastatic voice - YOUR VOICE - is heard.

 

It was just a few years ago when MBCN was founded. I remember when Nina
was planning the very first metastatic conference at Memorial Sloan-Kettering
Hospital.  They generously offered us a room that would hold 40 people and we
were concerned that it would be half empty.  People registered by email as we
didn't even have a website. Members of the support group at MSK handed out flyers
across the five boroughs of New York City.. and before we knew it, we  received 50
emails from people wanting to attend.  So MSK gave us a room to hold 70 people. 
And we kept getting emails from people wanting to attend! And MSK kept giving us
a larger room.. until we registered 250 people. Then they gave us the auditorium!

 

On the day of the conference, every seat in the auditorium was filled-
and there were 300 seats!

 

The need was great. Those of us living with metastatic breast cancer finally had
a home.. and a voice... and we needed information on treatments and ways to cope
with this disease. We needed a place to be accepted.

 

MBCN has worked hard to fulfill Nina's mission.  She was a fabulous leader who kept
moving forward and refused to accept being hidden in the shadows.

 

Below is her welcome from 2007. Her words are still relevant.

 

Welcome to our website. My name is Nina Schulman. I am a co-founder of the Metastatic Breast Cancer Network, an advocacy group of and for people living with metastatic breast cancer. Once you've had a chance to look around, we would love some feedback on our site. Before you begin to explore, let me tell you a little about MBCN.

 

Back in 2004, Jane Soyer and I founded MBCN when we realized that those of us with metastatic disease were the unheard voices in the cancer community.

 

As a woman living with metastatic disease, I had felt isolated and excluded from the very groups that were set up to help woman diagnosed with breast cancer.  I realized that the breast cancer community had become a place for 'survivors', not for people living with breast cancer every day of their lives.  We were not being seen or heard. No one was trying to meet our needs. No one was listening.

 

The 30% of breast cancer patients who become metastatic need to be heard. We need to be a proactive voice in the breast cancer community. And most important, we need to advocate for treatments to extend life as the search for the cure continues.

 

With the growing numbers of metastatic patients undergoing extended treatments, cancer can no longer be viewed as a disease from which one is either a 'survivor' or one has succumbed. These categories leave the metastatic patient isolated, feared, ignored and frequently under served by many cancer centers and breast cancer organizations. There have been advances made in the treatment of cancer which have had some impact on metastatic disease....yet, as we all know, too many of us die too young and too soon.

 

MBCN believes that it is up to us, all of us, metastatic and non-metastatic alike, to join together and fight for treatments to extend life for metastatic patients.  Those of us on the front line in the fight for the cure need everyone's support.

 

Let our voices be heard.

 

 

 

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Nina died on April 10, 2008. She lived with metastatic disease since December 1999. A bold and innovative leader, she is an inspiration to us all.

 

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