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Today is Metastatic Breast Cancer Awareness Day

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    Posted: Oct 13 2011 at 7:59am
 I just received this email from MBCN (Metastatic Breast Cancer Network)...Was difficult to cut and paste it..hopefully it worked

all the best,

Steve





Greetings Stephen,
  

 
 Today is METASTATIC Breast Cancer Awareness Day.
 
To most, just another day in Breast Cancer Awareness Month. To us, as MBCN members, a day with a very special significance. 
Members, just like you, worked very hard to make this day official.  In 2007 and 2008, members from across the country contacted their mayors and governors to spread awareness of this disease in their areas.  In 2009, a small group of MBCN members from across the country went to Washington DC.  They were successful in getting both the Senate and House of Representatives to officially declare the day.  It is because of our members that we finally have our day. 

I was diagnosed straight to stage IV in 2004, the same year Nina Schulman and Jane Soyer started MBCN. The breast cancer world at that time was not a welcoming place for those with metastatic breast cancer.

 

In 2004:
  • There were few if any breast cancer groups that recognized metastatic breast cancer.
  • There were no conferences specific to the metastatic breast cancer audience.
  • There were few, if any, educational materials and pamphlets written for those with stage IV.
  • Support groups specifically for those with metastatic breast cancer were almost impossible to find.
  • There were no groups raising funds to support metastatic specific research.
Today:
  • Now that we have our official day, MBCN has delved deeper into our mission to work hard on education and outreach. MBCN encourages other breast cancer organizations, hospitals, oncology offices and cancer centers to recognize the day with programs and educational materials specific to metastatic breast cancer. 
  • There are several support groups in existence that are for those with metastatic breast cancer. Some started by our own members!  
  • We've reached out to news media to ask them to include stories of those with mbc in their coverage of the disease and news media has reached out to us! 
  • The Metavivor group has handed out their 3rd grant to a researcher specifically studying metastasis.
  • On October 29th, MBCN will be having our 5th national educational conference for those with metastatic breast cancer. There is still time to register!!!

You are not alone. There are an estimated 155,000 people in the US living with mbc. Our organization has more than 2300 members and is growing daily. Our needs are urgent. We need more than the estimated 2% of research funds to be spent on mbc research. We need more and better treatment options. Options that are less toxic and will extend our lives. Options that can truly make this disease chronic. We need to be accepted and included in the breast cancer community. We need people to look into how their money is being used when donating to a breast cancer cause.

 

We have a very long way to go, but we are making progress.

Today is about awareness. If every one of us took a moment today to educate just one person on the realities of living with mbc, I know we could push that progress along.

 

Sincerely,
Suzanne Hebert
Vice President
Metastatic Breast Cancer Network  

www.mbcn.org 

I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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