Voices Newsletter                May 2015   
Greetings!

MBCN President Shirley Mertz

Making a Difference in Your Community  

 

What a busy--but rewarding--past few months these have been! I recently joined my fellow MBCN board members in Philadelphia for Living Beyond Breast Cancer's (LBBC's) annual metastatic breast cancer conference.  During LBBC's "Hear My Voice" program, I was privileged to hear the varied backgrounds and advocacy work of the program's amazing participants, and later in the conference, I was part of a panel discussing the importance of advocacy.

During a break in the program, a young woman named Shauntell Cullen approached me. She had heard my advocacy talk during MBCN's 2014 conference at the University of North Carolina. Shauntell's question to me at that time was "What can I do in Boise, Idaho?" I suggested she connect with the local affiliate of Komen. Now a few short months later, Shauntell was pleased to report her progress to me!

Shauntell had  learned that while the affiliate wanted to do more to acknowledge people with Stage IV, they didn't have contacts within the local MBC patient community. "The group had no one to help them navigate the world of metastatic breast cancer," Shauntell said. "The last thing they wanted to do was try to implement something when the women in the office didn't even really understand the term 'metastatic.' Well, here I was, ready to be that person."

Shauntell became part of a Metastatic Task Force and subsequently connected with another Stage IV patient, Lindsay. Shauntell and Lindsay's accomplishments include:
  • Securing an informational table with MBC literature and other information next to the survivor's tent on the group's race day,
  • Gaining special recognition on race day for Stage IV people as "Forever Fighters",
  • Filming a three-part  interview with Boise's top news station and
  • Being featured in Healthy Living magazine, a magazine with statewide distribution.
This is an amazing story of activism and advocacy at its best--one in which Shauntell and Lindsay are helping other metastatic patients as well as educating people who don't understand our situation, but thankfully are willing to learn.

Shauntell's story demonstrates that one person CAN make a difference. Thanks to the television interview and magazine story, Shauntell and her friend reached thousands of people--and it all started with just one phone call. What an inspiration for all of us!

Wishing you well every day,

 

Shirley

 
Scan, Treat, Repeat Shirts On Sale Now

Hurry! orders are due May 9th!

If you've attended a recent MBCN conference, you've seen our "Scan, Treat, Repeat" tshirts. We are happy our shirts have been a hit! In fact they've been so popular, we've struggled to keep up with the demand. 

 

Good news! We're trying out Booster.com's online ordering option. Our shirts can be ordered at  https://www.booster.com/mbcn for $15.

 

Because it isn't feasible to screen print tshirts on demand, the tshirt vendor doesn't print the shirts until all orders are received. The shirt company requires site users to run campaigns that are generally three to four weeks long. So, shirts can be ordered up until May 9, 2015. It will then take about two weeks for the vendor to print and deliver the shirts. Don't wait--order yours today!
 
Upcoming Events

Metastatic Breast Cancer Symposium in Waukesha, WI

Thursday May 14, 2015   1-4pm

 

GE Healthcare Institute

N16W224 19 Watertown Road, Waukesha, Wisconsin

presented by Susan G. Komen Southeast Wisconsin

Program topics:

  • Types and treatment of MBC - Ian Krop, MD, Dana-Farber Cancer Institute
  • Research on metastatic breast cancer - Danny Welch, PhD, University of Kansas Cancer Center
  • How Patients Can Take Charge of their Treatment and Be their own Best Advocate -Shirley Mertz, MBCN President

Register at: 

southeastwi.info-komen.org/mets  

More info: [email protected]   

 

 

Metastatic Meet Up in New York City

Tuesday June 9, 2015  4:00-8:30PM

Dr. Cliff Hudis of Memorial Sloan-Kettering will discuss DEVELOPMENTS IN TREATMENT FOR METASTATIC BREAST CANCER.
PLUS: A panel of women living with MBC will discuss daily challenges of living.
At: Rockefeller Research Laboratories

     430 East 67th St (between York and 1st aves)

     New York City
Registration required: call Christine at 212-937-5586 or

email: [email protected]


 
October 16-17, 2015 in Boston
9th Annual Conference
2015 Metastatic Breast Cancer Forum
Susan F. Smith Center at Dana Farber Cancer Institute
 
Lara's Story: Learning to Live Life Again

Lara MacGregor

Louisville, KY

Age at metastatic diagnosis (2014): 37

 

I was diagnosed stage 4 in January 2014 after nearly six years "cancer free" from my stage 2 diagnosis.  My first diagnosis and treatment came at age 30 in my 7th month of pregnancy. 

I have bone mets and have been responding to treatment.  Although the transition into being a patient again and facing Stage 4 has been devastating and so much harder than the first time around, I am learning to live life again and not be in so much fear of what is to come.

I am the founder of Hope Scarves. I got the idea for the nonprofit when an acquaintance sent me a box of scarves during my initial cancer battle with a note saying, 'You can do this,' and it was really inspirational for me. I wanted to do something positive to turn this scary time in my life into something meaningful. What has come out of it has been more than I would have ever hoped.

 
MBCN is a national, independent, nonprofit, all volunteer, patient-led advocacy organization dedicated to the unique concerns of the women and men living with metastatic breast cancer. We strive to help those living with metastatic breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.

� 2015 Metastatic Breast Cancer Network. All rights reserved.

MBCN is a 501(C)(3) not-for-profit organization.   

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