Join MBCN in Taking Part in ITSABOUTTIMEMBC

September 28, 2016

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Metastatic breast cancer – cancer that travels from the breast and spreads to other parts of the body – is treatable, but not curable. Though exact statistics are unknown, an estimated 155,000 people are living with the disease in the United States.

Those with metastatic breast cancer face challenges different from those with early stage because metastatic breast cancer patients are always in treatment. They experience ongoing anxiety and fear knowing they will die one day from the disease.

 

For metastatic breast cancer patients it’s about time. Time to spend with their families, time to cross something off their bucket list, time to simply drive the carpool or cook a meal.

It’s also about time we increased awareness of the disease, time we developed more treatments to help metastatic patients live longer, time there was more recognition and support of those managing this disease.

As we approach Breast Cancer Awareness month,the Metastatic Breast Cancer Network (MBCN) is proud to be taking part in the It’s About Time campaign to raise awareness of metastatic breast cancer. What does time mean to you and your family? What would you do with more time? We invite you to visit the campaign website at www.itsabouttimeMBC.com and share your stories – or spread the word on social media using the hashtag #itsabouttimeMBC.

More than 30 organizations and 100 bloggers will be sharing their stories. Please join us! You can share your story AND take part in a special Facebook event on Oct. 13; National Metastatic Breast Cancer Awareness Day. Beginning at 8:13 a.m. Central time, and continuing at 13 minutes past the hour, for 13 hours, It’s About Time will be hosting a conversation at https://www.facebook.com/ItsAboutTimeMBC/. Every hour matters, we hope you will join us.

Blogger and MBCN board member Katherine O’Brien has shared her story here

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Stage IV Breast Cancer Resources for Spanish Speakers

September 5, 2016

 

The Metastatic Breast Cancer Network (MBCN) offers brochures in English and Spanish for people living with  Stage IV breast cancer. Special thanks to our friend Sandra Bishnoi and the Center for Language and Intercultural Communications and the students in SPAN322–Medical Professions, Rice University, Fall 2015, for preparing the Spanish versions.

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You can download a copy of  Diagnostico: Cancer de mama metatasico .

….and here is the English version: Diagnosis: Metastatic Breast Cancer

MBCN also offers Conozca Los Datos as well as the English version: Get the Facts

 If you’d like hard copies of the above brochures, drop us a line.

This handout offers an overview of MBC in Spanish..  And here are questions you can ask your doctor about MBC.

 Here is a list of nationwide MBC  support groups–the majority of which are in English. But there are are some Spanish speaking Stage IV groups–here is a fairly new one:
CALIFORNIA: Mission Viejo
“Nuestro Camino Juntas”
3rd Tuesday of each month
11:30-1:00
Mission Women’s Wellness Center
26732 Crown Valley Parkway, Ste 171A
Mission Viejo, CA 92691
Contact: 949-481-4145 – Marilyn Viera, LCSW, Support Group Facilitator
Are there additional Stage IV materials/resources in Spanish we should know about? Let us know–we are happy to add them.

Ginny Knackmuhs: An Uncompromising Advocate

August 16, 2016

It it is never easy to share the news of another life lost to metastatic breast cancer. But it is particularly hard to let you know that our dear friend and MBCN board member Ginny Knackmuhs has died. Our sincere condolences to Ginny’s family, friends and fellow advocates.

Ginny’s accomplishments on behalf of MBCN and her fellow patients are far-ranging and enduring. She was the anchor of our website–a trusted resource for people around the world. Ginny was MBCN’s treasurer and webmaster but her reach far exceeded those official duties.

Ginny’s husband, Gary, used to refer to  us  as “your people.” If someone from MBCN or another advocacy group called the Knackmuhs’ home and he answered he would hand the phone to Ginny and say, “It’s your people.” He said all of these groups collectively reminded him of “The Five Families” as depicted in “The Godfather.” Although this wasn’t an entirely accurate assessment, in some ways Ginny was our Tom Hagen, the capo who got things done. She was a great natural leader and a woman of decisive action.

As Texans say, some people are all hat and no cattle. Not Ginny– because her treatment center didn’t have an in-person support group, Ginny helped establish one. When a national breast cancer organization overlooked people living with Stage IV breast cancer, Ginny presented the facts and asked them to re-evaluate their stance. (They did.) When the Metastatic Breast Cancer Alliance was coming together, Ginny was front and center and helped jump-start its creation.

A few years ago, an academic cancer center asked us to co-host a webinar on key issues in metastatic breast cancer. The proposed webinar was to take place in November–both Ginny and I felt that attendance would suffer because in the wake of Breast Cancer Awareness month, many people want to take a break from cancer talk. We asked our contact at the cancer center to shift the event to September or October but she said  their schedule was inflexible. Ginny was not to be denied. She politely–but firmly–said we could do it in October. And we did! I would have caved  and resigned myself to the November slot, but Ginny was made of stronger stuff.

“Ginny was the heart and soul of MBCN’s online presence,” says Shirley Mertz, MBCN’s President.  “Many visitors to MBCN.org  have expressed their gratitude to find patient-centric information.” “This is the most informative site I have been to yet,” wrote Jean M.  “Thank you for giving me a place to go, a place to get information that pertains to me.  I was moved by the many testimonials/videos.  So positive.  I found the technical section on drugs and treatments very informative – thank you for that. Also found it easy to navigate your site. It’s a great website and lots of resources, which I will be using.”

Doctors also commented on the wealth of information on the website, according to Shirley.  “This is all to Ginny’s credit,” says Shirley.  Ginny worked extremely hard on MBCN’s redesigned website which will debut shortly. It is a wonderful legacy.

ScanTreatRepeatGkMBCN has popularized the phrase “Scan, Treat, Repeat: Stage IV Needs More.” Ginny and I were talking about a motto that could be used to along with MBCN’s new logo and that is what we came up with. Ginny created the first iteration–complete with the now familiar circle and three arrows. I have seen doctors use the Scan Treat Repeat logo in their metastatic breast cancer presentations and patients quickly embraced it, too. Anyone would be proud to contribute a phrase to general usage, but Ginny has the distinction of contributing  the saying as well as boosting people’s understanding of the disease. MBC advocates often talk about “changing the breast cancer conversation.” Ginny has well and truly has done that.

Board member Deb Tincher and Conference Chair recalls, “If you attended an MBCN conference in recent years, you probably knew Ginny. As treasurer, she sent out scholarship reimbursement checks. It was an arduous and time-consuming task that required collecting surveys, expense forms and receipts from the attendees. Ginny knew many attendees are on tight budgets–she cut the reimbursement checks as quickly as possible. She was always thinking of others.”

Ginny, by her own example, pushed many of us to expect more and to do more. A couple of years ago, there was a special event in Time Square to call attention to October 13th, National Metastatic Breast Cancer Awareness Day. Ginny and I joined some other Stage IV patients and advocates on GMA’s outdoor plaza. (Ginny, true to her 1960s roots, took the precaution of taking only her ID and a small amount of cash with her. “In case we get arrested,” she explained as we walked over from our nearby hotel.)

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Ginny with SHARE’s Christine Benjamin and me on Time Square

I thought that if we were lucky, we might get our signs on television. Ginny actually got the weather person to acknowledge the MBC delegation as well as the Awareness Day designation on national television. “Next year I want to go INSIDE the studio and be interviewed,” Ginny told me.

Ginny had lobular metastatic breast cancer (most breast cancer is ductal) and  she also had the triple negative subtype which notoriously aggressive. She did not write extensively about the specifics of her case, but MBCN would like to share some information we think she would want everyone to know.

“I was diagnosed in 1992 with early stage cancer–Stage 0 or DCIS–the earliest you can have,” Ginny wrote in this blog post. ” I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. . . I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me. Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a fail-proof screening test.”

Ginny went on to say that her breast cancer education began the day she received her Stage IV diagnosis. “I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone. The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with the cure.'”

Ginny wanted her experience to have meaning. “I never want to characterize cancer as a gift,” she wrote. “I don’t think I need to endure treatments and side effects the rest of my life just to be a better person. But I’d like to believe that I have Stage IV metastatic breast cancer for a reason: to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the ‘guilt’ myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.”

She further noted that October 13 is Metastatic Breast Cancer Awareness Day. “It’s the one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring. . .It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out…”

Amen, Ginny. We will, too. 

–Katherine O’Brien, August 2016

 


Adrian B. McClenney, IBC Patient Advocate, Author and Inspiration

August 14, 2016

 

We are sorry to share that Adrian B. McClenney has died. Adrian was 46 years old–a beautiful, wife, mother, grandmother, sister and friend.

I met Adrian in New York when we both participated in a workshop conducted on behalf of the Metastatic Breast Cancer Alliance. We were there to provide insights on what people living with Stage IV breast cancer wanted the general public to know about the disease.

I called Adrian and asked if she would like to go to breakfast. She readily agreed and met me in the lobby. Adrian had a seemingly effortless beauty–I don’t know many people who could look that radiant, that together, first thing in the morning, but Adrian definitely could!

We started talking and I learned Adrian was a bus driver until she was diagnosed with metastatic breast cancer. If there was an award for Nicest and Most Glamorous Person Driving a Bus she surely earned it. The transit industry’s loss was patient advocacy’s gain: Adrian was active with many groups–both where she lived in Miami, but also on a national level.

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Read more here.

Just a few weeks ago, Adrian flew to California to participate in Project Lead, a prestigious science training program for breast cancer activists. She also is a 2016 Ford Model of Courage–she participated in a photo shoot, modeling gear that is sold online to raise funds for three breast cancer non-profits.

Adrian held a special place in my heart because like my mom, she had inflammatory breast cancer (IBC). IBC is a rare, but aggressive breast cancer that doesn’t have a lump. Overnight, a person’s breast may become red and swollen with the skin having the texture of an orange peel. It accounts for about 5% of all breast cancers and is usually found at Stage 3 or Stage 4. People with IBC are often misdiagnosed–their cancer may be confused for a breast infection such as mastitis. Further complicating Adrian’s case was her breast cancer’s triple negative subtype. Triple negative breast cancers are often more aggressive, and, since there is no protein or receptor to target, chemotherapy is typically the only treatment available.

It took five months for Adrian to be properly diagnosed. She worked to inform others about IBC, starting an initiative called Hot Pink  High Steel Toe Boots “to educate the world about inflammatory breast cancer.”

Adrian was diagnosed with Stage 3b IBC on May 19th 2011. Her treatment regimen consisted of 16 cycles of chemotherapy, a bilateral double mastectomy and 37 radiation therapy treatments. In  March of 2012, Adrian had No Evidence of Disease (NED). Unfortunately, in July 2014 she learned her cancer had returned and this time it was metastatic, having spread to her neck, check wall and pelvis.

When me met in New York, Adrian told me a little about her family and her pride and love were obvious. “All I could think of were my children and who would take care of them,” she said, when remembering her diagnosis. Her daughter was in fourth grade at the time of her original diagnosis. Her son was playing college football for a well-known program but Adrian would never have told me that–she seemed very modest–both about her own talents and those of her family.

AdrianOn Facebook, she was Author Adrian–she wrote two books: “Pink Lifesaver”, a 31 day affirmation book with biblical scriptures included and “Pink Sunshine”, a self-help workbook designed for you to realize what you’re grateful for and what truly means the most to you. She  also co-authored “Igniting Your Faith Factor.”

A quick glance at Adrian’s Facebook page shows the tremendous legacy she leaves. Friends and fellow advocates from across the county shared photos and how much Adrian touched their lives. Many spoke of her laugh, her smile and her strong faith. Others also shared how Adrian had reached out to encourage and inspire them when they faced challenges of their own.

Adrian3Her faith never wavered. Adrian was often exhausted from her treatments but few people who saw her would have guessed this. “There are many things in life that happen that we don’t plan, but we adjust, regroup and keep pushing forward,” she said. “No matter what, I refuse to lose. I am tired every day, but it is my duty to fight like a big girl. All the challenges I face, I do it with a smile. I have a family that needs me, but loves me more.”

Our sincere condolences to Adrian’s family and friends. She will be sorely missed.

–Katherine O’Brien, August 2016

 

 

 

 


Celebrating Jill Cohen, Dancing With Cancer Blogger

August 13, 2016

We are sorry to share that “Dancing With Cancer” blogger Jill Cohen died this past Thursday, August 11, 2016. Jill lived for a remarkable 14 years with metastatic breast cancer. She was 56 years old.

“Jill’s last dance with cancer occurred this morning at 11:18 today at hospice at Swedish at Cherry Hill in Seattle,” wrote her husband, Rik, in a Facebook post. “She was not in any pain. Susan her sister and I were there holding her hands as she breathed her last breaths. She lived life to the fullest, and wanted no “pity party” so do not mourn her death but celebrate her life by living and loving each other. Thank you to all for the hugs, love and reachouts from around the globe. Jill and I thank you from the bottom of our hearts.”

Funeral services are set for Sunday at 3PM at Congregation Beth Shalom at 6800 35th Avenue NE in Seattle’s Wedgwood neighborhood. In honor of Jill’s last request purple is the color of the day. 

“I know many women don’t live as long as I have with mets (12 years as of August 2014),” Jill said  in this post. ” I think I provide hope to many even though I have mets to multiple bones, liver and brain, long-lasting neuropathy and lymphedema as well as the usual fatigue etc. associated with years of treatment.”

Jill most certainly did provide her fellow patients with hope. She had so many talents and interests: music, cooking, writing, dogs and of course dancing. Although cancer was part of her reality, Jill was so much more than a cancer patient. She was always on the go. I was amazed in 2014, when Jill went on a tour of Bulgaria with her folk choir, Dunava. I really enjoyed Jill’s accounts of the trip: She was a keen observer with a fine eye for small details. “New shops, cafes, and restaurants abound,” she wrote of her excursion to Plovdiv, the second largest city in Bulgaria. “Except for the public toilets, where a squat toilet and Western-style toilet sit privately side by side. To use either one, you have to ‘pay’ the lady outside 50 stotinki, which regretfully doesn’t make the toilets any cleaner.”

Jill was very proud of her heritage–she gave her readers a wonderful glimpse into her faith and its traditions. In 2010, she wrote about celebrating the Jewish new year. “I was honored with the Kohen aliyah to the Torah,” she wrote. “Every time I am asked to read this blessing, I think of my father. For Dad, being a Kohen, a descendant of the ancient Jewish priests, was a special responsibility and privilege. . . I remember the first time I was offered the Kohen aliyah, at summer camp when I was about 15. I knew about it a few days in advance and had to call home long distance — collect! — from the pay phone to be sure I knew my full Hebrew name: Yachna Maryam bat Shimon Shir haKohen u’Masha Leah. Dad was startled but happy to oblige.”

Although Jill provided in-depth descriptions of all that was happening with her treatment, these accounts were straight forward–no drama, no despair, just the facts. Or, as Rik said, no pity party.

Jill was active with many cancer groups–a great spokesperson for those living with Stage IV breast cancer. She participated in Living Beyond Breast Cancer’s (LBBC) Hear My Voice patient advocacy program and shared her story here. She was one of five women with mets profiled as part of  A Story Half Told,  a national partnership with advocates, patients and healthcare professionals that aims to elevate public understanding of metastatic breast cancer.

Jill said that her philosophy was Dum vivimus, vivamus which means while we live, let us live. “Life is precious,” Jill said. “In a very real sense, we all have the same amount of time — today.”

May her memory be for a blessing.

 

–Katherine O’Brien, August 2016


Remembering Sarita Joy Jordan

June 21, 2016
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Sarita at MBCN’s 2015 Conference in Boston

We are sorry to share our friend and fellow advocate Sarita Joy Jordan died this past weekend. Our sincere condolences to Sarita’s family and friends.

I met Sarita shortly after her 2013 metastatic diagnosis. We were at the YSC conference in Orlando and she had just participated in the Disney Princess 5K. Her first thought was for her children–I think that was always her outlook–her children came first.

I often told Sarita that she was so well named–“Joy” was her middle name and she truly exuded it. Sarita brought joy to so many people. If they were having a bad day, they could count on her Facebook posts to raise their spirits. They were often just a cute picture, sometime selfies of her morning drive with “Mini Me” as she sometimes called her youngest son. Sarita was very proud of her kids’ athletic, artistic, musical and scholastic achievements–we loved to share in this pride when she posted their latest accomplishments.

Sarita’s ever present smile was her trademark. She was among the most open and giving people I have ever met. Sarita gracefully dealt with insurance and other issues that would have made most of us swear, cry or just rant. That was not her way. She just deal with things–and she had faith things would ultimately be resolved.

Faith was so very important to Sarita. A lot of people don’t live their faith–Sarita really did–she embodied The Golden Rule. She touched so many lives–and by her own example surely inspired others to love their neighbor, too.

I don’t think Sarita ever hesitated to try something new. A few years ago, she was urging me to sign up for “Casting for Recovery.” Although I am a country mouse, the idea of putting on hip waders and standing in some body of water trying to catch a salmon or trout with a fly fishing rod was not in my comfort zone and I said so. Sarita, the Philly girl, didn’t hesitate at all. Even after she hooked her eye with first ever cast, her enjoyment wasn’t diminished one bit.

Last fall she posted a video of another adventure–this one was First Ascents, I believe. The trip involved  not only kayaking but sitting in the kayak on a bridge about 10 or 12 feet above the water and launching the kayak–essentially jumping into yet another body of water but while wearing a kayak. I can still remember the cheers in that video after Sarita successfully completed the challenge–maybe none louder than hers.

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Mary Hernandez and Sarita shooting the MBC Alliance video: https://www.youtube.com/watch?v=AqUS582jkfg

Sarita was a tireless advocate. She worked with the American Cancer Society, Living Beyond Breast Cancer, the Metastatic Breast Cancer Network, the Metastatic Breast Cancer Alliance, Young Survivor Network and I am sure many others. A few months ago, despite all that was going on with her health, she even served as a DOD reviewer.

For an LBBC blog post, Sarita reflected on why she told her story: “I choose to share my story so that others don’t feel they are alone. I tell my story because I am an African-American and my community needs to be able to relate to the messenger…I  tell my story because I’ve learned that little money is spent on research for metastatic breast cancer and I’m running out of time to have my voice heard. This is why I am so grateful to be a Hear My Voice Outreach Volunteer with LBBC: to participate in community events and advocacy for metastatic disease. I tell my story for those that are no longer able to tell theirs.”

Last year I wanted to make a video about racial disparities in breast cancer. Many of the people featured in the video were Sarita’s friends. I am indescribably sad that she has now joined those friends.

But I will take my cue from Sarita–I will tell my story–and others. And I will embrace the words Sarita used in her Facebook profile: Educate, educate, educate!

Sarita’s legacy is everywhere–in her children, in the many, many lives she touched, in the countless advocacy projects she did. It was truly an honor and a blessing to have known Sarita. I miss her already and I always will.

—Katherine O’Brien, June 2016

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Metastatic Breast Cancer Researchers Address MBC Alliance Meeting This Week

February 1, 2016
Shirley Mertz is representing MBCN

Advocates, researchers, industry and government representatives are at the Alliance’s meeting, including MBCN’s own Shirley Mertz

 

Metastatic Breast Cancer Alliance Research Task Force Meets Today in Dallas; Focus of Discussion is Improving Length and Quality of Life for People Living With Metastatic Disease

Dallas – February 1, 2016 – Metastatic breast cancer (MBC) is cancer that originated in the breast but has spread to other parts of the body, such as liver, lung, bones and brain. It causes >40,000 deaths every year in the U.S., a number that has remained unchanged for three decades.  

This alarming fact is driving the advocate-led Metastatic Breast Cancer Alliance (“the Alliance”) to convene 60 experts from patient advocacy, academia, industry and government to discuss barriers in MBC research and possible solutions to better coordinate and accelerate research and translation to help patients sooner.

“As a person living with MBC each day, I’m grateful for the scientists and experts who have taken time out of their busy schedules to help guide the Alliance in the most thoughtful directions for MBC research,” commented Shirley Mertz, President of the Metastatic Breast Cancer Network and Co-Chair of the Research Task Force.  

Dr. Danny R. Welch, Professor and Chair of Cancer Biology at the University of Kansas Cancer Center noted at the start of the meeting that “My career has been focused on research on metastasis and putting an end to breast cancer. I have never seen as much energy, collaboration and excitement to work together – across academic, patient advocacy, industry and government sectors- as I have by working with this Alliance.”  

“As Co-Chair of the Alliance Research Task Force, along with Shirley Mertz, we’ve been working with these experts for the last eight months [by phone and webinar] discussing barriers to MBC research,” said Stephanie Reffey, Managing Director, Evaluation and Outcomes at Susan G. Komen, today. “These prior meetings culminated in today’s “Think Tank” in Dallas, where we are devising specific, actionable projects the Alliance can lead to accelerate MBC research.”  

In 2014, the Alliance released its Changing the Landscape for People Living with Metastatic Breast Cancer Report, which analyzed 224 clinical trials, 2281 funded research grants, 7900 MBC patient responses to surveys and 175 literature articles on quality of life and epidemiological studies.  

“Our research of the scientific landscape found a number of gaps and challenges in lab research and clinical trials impeding progress in scientific research,” said Chair of the Alliance, Dr. Marc Hurlbert. “After today, the Alliance’s task is to now facilitate a cooperative effort to review the objectives from this meeting and develop actions that can be taken in the immediate term. Given the toll MBC takes on patients and their caregivers, we have a responsibility to waste no time acting on the direction from this important meeting.”  

Representatives at the meeting in Dallas include:
Advocate Nonprofits: Breast Cancer Research Foundation, BreastCancerTrials.org, Dr. Susan Love Research Foundation, Inflammatory Breast Cancer Research Foundation, Metastatic Breast Cancer Network, Patient Advocates In Research (PAIR), Research Advocacy Network, Susan G. Komen, Theresa’s Research Foundation  

Academic Institutions: Baylor College of Medicine, Broad Institute, Dana-Farber/ Harvard Cancer Center, Fred Hutchinson Cancer Research Center, Institute of Cancer Research (UK), Johns Hopkins University School of Medicine, NYU School of Medicine, Salk Institute for Biological Studies, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, University of California San Francisco, University of Kansas Cancer Center, University of Michigan, University of Pittsburgh Cancer Institute, University of Southern California, University of Washington School of Medicine, University of Texas MD Anderson Cancer Center
 

Government: U.S. Food and Drug Administration, National Cancer Institute
 

Industry: Eli Lilly and Company, Genentech, Novartis Pharmaceutical Corporation, Pfizer Worldwide Research & Development
 

About the Metastatic Breast Cancer Alliance
The Metastatic Breast Cancer Alliance is led by advocates and, since forming with 15 groups in October 2013, has grown to be the largest breast cancer alliance in the U.S. with 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners. The Alliance vision is to transform and improve the lives of people living with metastatic breast cancer. The Alliance’s work focuses on three outcomes:
1. Advancing progress in scientific research
2. Increasing understanding of the disease and access to information and support
3. Building awareness of how metastatic disease differs from early stage breast cancer
 

More information about the Alliance is available at www.mbcalliance.org
Facebook: https://www.facebook.com/mbcalliance/
Twitter: @mbcalliance #MBCResearch
YouTube: http://www.youtube.com/mbcalliance