Tag Archives: Ellen Moskowitz

Highlights from MBCN’s 2012 Chicago Conference on Metastatic Breast Cancer

Canadian friends Penny Overes, Catherine Spencer and
Danielle Smith were among the 200+ attendees. Alberta represent!

MBCN’s 6th Annual National Conference (“Moving Forward With Metastatic Breast Cancer,”) took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at MBCN.org. In the interim, here are some highlights from selected breakout sessions, from attendee Pam Breakey. Pam is a long-time participant on the BC.Mets.org site and, as you will see, takes wonderful notes.
Part One: General Sessions

Part Two: Selected Breakout Sessions

We were honored to have Medical Lessons blogger and Atlantic correspondent  Elaine Schattner join us. Dr. Schattner is a trained oncol­ogist, hema­tol­ogist, medical edu­cator and jour­nalist who writes and speaks on med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. Her work has appeared in Slate, the New York Times, Sci­en­tific American, Cure Mag­azine and the New York Observer. Read  her great article for the Atlantic here.

MBCN Honors Dr. Pat Steeg’s Dedication to Metastatic Research With the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award

MBCN board member Shirley Mertz presented the award to Dr. Pat Steeg.

In other conference news, MBCN presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award. “For the last 20 years, in her laboratory at the National Cancer Institute, in Bethesda, Maryland, Dr. Patricia Steeg has been researching how cancer cells from the primary tumor in the breast travel to vital organs, in particular the brain,” said Shirley Mertz, MBCN board member and prominent patient advocate. “Dr. Steeg identified the first cancer suppressor gene and has done pioneering work on brain metastasis. Although metastatic research is difficult and involves long and complex experiments, Dr. Steeg remains undeterred. She exerts strong leadership in the research community nationally and internationally.”

Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials,
researchers typically are trying to determine if a drug shrinks metastases.
“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.” Steeg referenced a
perspective piece, “The Right Trials,” she wrote for Nature this past May.

“The proposal I’ve put forth should apply to a number of different cancers, particularly those where the majority of patients are diagnosed before they have full-blown metastatic disease, or if they have limited, treatable metastatic disease,” Steeg told NCI Cancer Bulletin this past June. “One could imagine applying this to prostate, bladder, and colon cancers.”

Don’t Miss These Awesome Photos:

But wait! There’s more! Awesome conference photographs, courtesy of Ellen Averick Schor are Here.

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NCI’s Pat Steeg: Let’s Redesign Clinical Trials to Test Therapies That Prevent Metastasis

More than 200 people with metastatic breast cancer and their supporters came to Chicago for the 2012 National Metastatic Breast Cancer Conference held on Oct. 13th, National Metastatic Breast Cancer Awareness Day. Photo credit: Ellen Schor

As hundreds of metastatic breast cancer patients offered a standing ovation, the Metastatic Breast Cancer Network (MBCN) presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award. The award was given at MBCN’s 6th Annual National Conference which took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago.

“For the last 20 years, in her laboratory at the National Cancer Institute, in Bethesda, Maryland, Dr. Patricia Steeg has been researching how cancer cells from the primary tumor in the breast travel to vital organs, in particular the brain,” said Shirley Mertz, MBCN board member and prominent patient advocate. “Dr. Steeg identified the first cancer suppressor gene and has done pioneering work on brain metastasis. Although metastatic research is difficult and involves long and complex experiments, Dr. Steeg remains undeterred. She exerts strong leadership in the research community nationally and internationally.”

 

Shirley Mertz with NCI’s Pat Steeg

The award—which includes a monetary grant to be used for metastatic research—is named after MBCN’s former President, Ellen Moskowitz, and former Vice-President, Suzanne Hebert.  “Ellen and Suzanne worked side by side for five years to establish MBCN as the voice of people living with metastatic breast cancer,” said Mertz. “Together, they pushed for change and inspired many to take action to promote awareness and provide education for metastatic breast cancer patients and professionals alike.”

The MBCN board wanted to honor these remarkable women by recognizing a scientist and researcher whose persistent leadership and work embodies what Ellen and Suzanne fought for—research about metastatic disease that could result in treatments to extend the lives of metastatic breast cancer patients.

Mertz presented the award to Steeg “with great appreciation and anticipation for the future…along with our deep thanks for your dedication and persistence in metastasis research.”

Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.

“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.” (Steeg referenced a perspective piece, “The Right Trials,” she wrote for Nature this past May: http://www.nature.com/nature/journal/v485/n7400_supp/full/485S58a.html)

Conference chair and MBCN board member Deb Tincher noted that many attendees cited Steeg as their favorite speaker at the 2012 event. “One person described Dr. Steeg as ‘spectacular and passionate’ and we certainly agree,” Tincher said. “We also agreed with the rest of her comment: ‘Dr. Steeg is in the trenches helping us and it showed!’ We are proud to recognize and support Dr. Steeg’s work.”

“I’m glad Dr. Steeg is on our side!” said one metastatic breast cancer patient at the 6th Annual MBCN Conference.

 

ABOUT MBCN’s ANNUAL CONFERENCE

MBCN held its first conference at Memorial Sloan-Kettering Cancer Center in 2006. Subsequent conferences have been held at M.D. Anderson, Dana-Farber, Indiana University’s Simon Cancer Center and at Johns Hopkins.

 

ABOUT THE METASTATIC BREAST CANCER NETWORK

MBCN is a national, independent, nonprofit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer. MBCN was founded in 2004 by Jane Soyer and Nina Schulman. When diagnosed with advanced breast cancer, they experienced feelings of isolation from the very groups established to provide support. They felt the stigma of being a “failure” in the breast cancer community. Their belief that cancer cannot 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.  See www.mbcn.org.

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MBC Mavens Jane, Nina & Ellen

Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network  (MBCN) in 2004.

Soyer, an NYC public school teacher, mentor and guidance counselor died in 2005. Schulman, an Emmy Award-winning film editor, producer and director, died in 2008.

“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.

43 minutes ago · 

 

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  mbcn@mbcnetwork.org.

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