Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network (MBCN) in 2004.
“Meeting Nina in 2006 changed who I was,” says Ellen Moskowitz, MBCN’s volunteer president for the past five years. “Nina would not accept being ignored by the breast cancer community and believed we need to be our own best advocate through education. People, need to know we are here—155,000 of us living with metastatic breast cancer in the U.S.– the entire breast cancer community needs to embrace all of us with breast cancer, not just those who may think they are cured.”
Moskowitz says joining MBCN and working with Nina gave her a purpose. “I developed pride in being able to reach out to so many,” she recalls. “I experienced a very satisfying feeling of empowerment.”
According to Moskowitz, Schulman “would rant when other breast cancer organizations would once yearly light a candle for all who died that year and then go on with business as usual–business that excluded doing anything to meet the unique needs of our population.”
Schulman wanted people to know that although many are still dying too soon, “many people with MBC are living longer and stronger,” says Moskowitz. ” We should not be [dismissed] with the thinking that ‘they will die anyway.’ Nina was determined that our programs, our brochures, our website all represent hope. She would not allow any aspect of death. She didn’t want candles lit or moments of silence in remembrance…She wanted everyone to focus on keeping us alive!”
Prior to 2004, there were
no very few metastatic support groups. “There was no mention of MBC during pink ribbon month, no talks on mestatatic disease at any cancer conferences, no nothing!” Moskowitz says. ” We were completely and totally hidden away and frequently made to feel we just didn’t fight hard enough.”
(Update: After the original post Marie Carmel reminded us the IV League in Austin, TX was founded in 2002. Find them on Facebook, too. For more support groups, including a list of regional groups, see http://mbcnetwork.org/support-resources/category/support/)
Marie Carmel Our Stage IV group was founded in 2002. Yes, we were hidden and we had to fight for our survival, both as cancer patients and as a support group. … but we did exist.
After more than five years of volunteering with MBCN, Moskowitz recently stepped down as president. “We started with 30 members and now have close to 2,000 members across the country and scattered members across various oceans!” she says. “Our new president is Michele Przypyszny and I know she will work hard to grow our mission and connect with you.”
Moskowitz is proud of the projects she completed with the help of other MBCN volunteers. She teamed with volunteer Suzanne Hebert to plan, organize and edit the pamphlets in the MBC kit. She credits volunteers Shirley Mertz and Susan Davis with leading MBCN’s successful drive to have both the House and Senate declare Oct. 13 National Metastatic Breast Cancer Awareness Day.
“All of us made that happen,” says Moskowitz. “The previous the years of members reaching out to their mayors and governors to proclaim the day set the stage for the House and Senate to do their part.”
Moskowitz is also enthusiastic about the recently launched MBCN website. Volunteer Ginny Knackmuhs led this effort which represented more than a year of planning and ongoing work.
What’s on Your To Do List?
At www.mbcnetwork.org you can:
>Order a metastatic kit (brochures).
>Request a t-shirt to wear when you do cancer walks.
>Watch the videos from our conferences.
>Take a look at metastatic events–maybe there is something in your area.
>Read inspirational stories.
>Share your inspirational story.
>Check the latest MBC news.
>Contact your local newspaper and request they do an informational piece on MBC.
>Encourage your cancer center to start a metastatic support group.
>Become a member of MBCN and let Michele know if you have a particular skill or interest to volunteer.
The last word
“We need to keep this awareness growing,” Moskowitz says. “We need to speak up and not allow MBC to be put on the back burner. We need to ensure that National Breast Cancer Coalition (NBCC) includes research to STOP metastatic spread—and not just to prevent metastatic spread. So much has changed for us since I was diagnosed. I am so proud to have been a contributing factor to this change. We are bonded and our voice is louder than ever–we are actually being heard!”
Keep in touch
Membership in MBCN is free. Signing up at www.mbcnetwork.org ensures you’ll be on the mailing list. Look for more details on the next National Conference soon. For more details send an email to firstname.lastname@example.org.