Last October 13th, the officially designated Metastatic Breast Cancer Awareness Day, the Metastatic Breast Cancer Alliance was announced. "The vision of the Metastatic Breast Cancer Alliance (MBCA) is to transform and improve the lives of women and men living with metastatic breast cancer." 
see https://www.facebook.com/mbcalliance
or http://www.mbcalliance.org

A meeting during the San Antonio Breast Cancer Symposium (SABCS) brought together representatives of interested advocacy groups along with representatives from various pharmaceutical partners committed to the project. MBCA member Musa Mayer presented an overview of metastatic breast cancer focusing on patient needs, research, and the importance of a collaborative effort to address the problems. The Inflammatory Breast Cancer Research Foundation was represented at this meeting by Executive Director, Ginny Mason.

Ginny has been involved in the research working group. This group has been reviewing funded MBC research grants, assembling data, and working on a landscape document that will identify gaps in research as well as areas where advances have been made that might benefit from more attention.  

In early March of this year organizations and pharmaceutical companies sent representatives to a meeting in New York. The several working groups reported and 'next steps' were identified. We were reminded that this is indeed a huge undertaking and it is important to obtain an understanding of what's already been done, what things are currently being done, and where gaps exist that could be addressed by the MBCA. Under the guidance of Marc Hurlbert of the Avon Foundation, the MBCA will gather again during the American Society for Clinical Oncology Annual Meeting (May 30-June 3) for an update on the landscape document with the plan for distribution later this year.

The Inflammatory Breast Cancer Research Foundation is honored to be a part of this collaborative effort focused on the needs of metastatic breast cancer patients. Unfortunately many inflammatory breast cancer (IBC) patients are metastatic at diagnosis or become metastatic at some point in their disease course. For this reason the voice of the IBC community is an essential part of these discussions.

An informative video has been developed to share what's been happening in these first months of the MBCA. 

Those are words no one ever wants to hear, but I had always thought I would see this ugly disease one day. It wasn't a total shock when I heard those words, but it still throws your life for a loop.

I was diagnosed in May 2003 with the most dreaded of all breast cancers, inflammatory breast cancer. I had never even heard of it. I didn't realize there was more than one kind of breast cancer. I decided to get on the internet to do a little research on inflammatory breast cancer (IBC). I found several things that scared me, but I also found some great information when I came across the Inflammatory Breast Cancer Research Foundation website. Seeing they had a toll-free phone number, I decided to make a call to get answers to some of the questions I had. On that first try I reached an answering machine and left my contact information. I was excited when I received a call back before the end of the day. The woman I spoke with was as helpful as she could be and told me that Ginny Mason, the Executive Director, was a nine year survivor which gave me reason to hope.

 About a week later I got another call from the Inflammatory Breast Cancer Research Foundation double checking that I had received the help I needed when I was called. I said that I had and as we talked, she informed me that she was the Executive Director and nine year survivor the other lady had told me about. She also said that she knew two other nine year survivors! Ginny and I talked for almost an hour and even answered more questions I had. Before those calls I wasn't sure if I'd do the treatment. So much of what I read didn't sound good for survival and I wasn't sure I wanted to go through all that and still not survive. Hearing from survivors that it was "doable" and they were living a full life helped me decide to go ahead with treatment and I'm glad I did!

Fate is funny, several years ago Ginny and her husband came to a church in a town near where I live. She contacted me and we got to spend time in person, discussing life, our families, and our faith. Of course we also discussed the cancer that had introduced us to each other and so many wonderful people we wouldn't have ever met had it not been for being told those dreaded words.

There is a lot of information on the internet but it isn't all accurate and some sites try to scam desperate people but the Inflammatory Breast Cancer Research Foundation is a REAL site with REAL SURVIVORS who have a heart for helping others. You can feel confident in their knowledge and compassion.  

That would be this foundation and shopping on Amazon! 

A few months ago we shared an easy way to help support the Inflammatory Breast Cancer Research Foundation when you're shopping online. The AmazonSmile program allows you to designate a non-profit to receive a donation (0.5%) with each qualifying purchase. You just go to www.smile.amazon.com (bookmarking the page is helpful!) and sign-in to your Amazon account, or set up an account if you don't have one. On your first visit to AmazonSmile, indicate Inflammatory Breast Cancer Research Foundation as the charitable
organization to receive donations BEFORE you begin shopping. Amazon remembers your charity choice and it will show up each time you log-in to AmazonSmile.

Be sure to share this information with your family and friends and ask them to support the Inflammatory Breast Cancer Research Foundation with AmazonSmile purchases! It costs you nothing and will benefit many.

Oh, and if you Tweet and/or use Facebook or email, let your friends and followers know how to support us with a simple click at the end of your AmazonSmile transaction.  

From the Metastatic Breast Cancer Network: "Are you looking for financial assistance with direct medical costs (co-pays, deductibles), related non-medical costs (transportation, gas, child care) or daily living expenses (rent, utilities)? With effort and persistence, you can find some help. 

As an all-volunteer operation MBCN does not give direct aid and unfortunately can't provide one-on-one advice, but they have put together a useful handout. 

Top 12 Tips for Finding Financial Help (1 page, .pdf file, 88K) 

[Used with permission of MBCN]