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Advocacy — Use Your Voice

We’ve Come A Long Way!

Until 2009, metastatic breast cancer was rarely mentioned during October, the month of Breast Cancer Awareness. The leaders of The Metastatic Breast Cancer Network knew what is kept hidden and not discussed will never be changed.

Nine determined metastatic breast cancer patients, all members of the Metastatic Breast Cancer Network, traveled to Washington, D.C. in the summer of 2009 to change that reality. The 9 patients, with friends and family, lobbied Senators and House members to designate one day in October–October 13– as National Metastatic Breast Cancer Awareness Day. Back home, many, many metastatic patients called their Senators and Representatives to ask them to support the requested resolutions.

On October 13, 2009, the Metastatic Breast Cancer Network received word that our efforts had been successful. Each house of Congress, the Senate and the House of Representatives, passed a unanimous resolution declaring October 13 as OUR DAY to put metastatic breast cancer patients and their needs in front of the public and stakeholders within the breast cancer community.

Now it is up to every metastatic breast cancer patient and those who love and support them to find ways to make use of this day (and throughout the year) to further our cause to support those living with the disease and demand focused research to find treatments to extend our lives.

YOU can make a difference by using your voice to tell your story and the realities of metastatic breast cancer to others.

How to get started creating awareness and bringing about change

We know there is a lot of misinformation about breast cancer, particularly because of the media and the fundraising campaigns of many breast cancer organizations. Where do we start to change things? It’s really 4 easy steps:

Step 1: Get Educated

You can’t expect to change minds and dispel myths without knowing what you’re talking about!  So spend some time reviewing the MBCN website, particularly the Education and Awareness Sections. Read the 13 Facts several times.

Step2: Pick an Activity

There are a range of activities you can do –including writing a letter, posting comments to a blog or article, writing your story, being interviewed, organizing a program or support group, hosting a fundraiser or being a patient reviewer of research grants.

It all begins with your very own story. Think about it. Write about it from your heart. You have a unique perspective on being diagnosed with metastatic disease and learning to live with that reality. You don’t have to tell every detail of your disease and life. Think in terms of a few paragraphs, 500 words or less, a 5 minute speech. We can help you.

You can start slowly with advocacy: write your story or write a letter to the editor of your local newspaper. As you get more involved you may find yourself trying other activities in this kit or creating your own.

We’ve included details and tips on various activities to help you along.

Step 3: Use MBCN resources

  • MBCN offers a brochure for the newly diagnosed and one for the general public to explain what mbc is and what MBCN does.
  • We can help you publicize a program or event in your area by listing it on our website, Facebook, Twitter and sending an email blast to members in your local area.
  • We have included tips and guidelines for various activities in this kit. Remember you can always call or email us and one of us will be happy to discuss your questions and plans and help you edit your story.

Step 4: Report Back

We’d love to know what you’re doing, so don’t forget to take pictures of your event or program, or send us links to news articles or letters. We will publicize these on our website, Facebook, Twitter and our email newsletter to thank you for your efforts and to inspire others to follow your lead to get the message out.

Actions You Can Choose

Write your story

Use your powerful voice to write and/or speak about your story and issues pertaining to metastatic breast cancer.

Begin your story with a general introduction of who you are, your breast cancer history and a general description of mbc. Follow this by sharing your particular struggles (coping with side effects, raising children, making job changes, relationship issues)  Conclude with how you are managing to move forward with the disease. Readers tend to respond to a balance of realism and hopefulness in a story.

The act of writing your story will focus you on what your personal message is from your experience and becomes the basis for writing letters to the editor or being interviewed. Here are some examples:

Ginny Knackmuhs: An Uncompromising Advocate

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.

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

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.