Thank you for your input!

Many thanks to those who responded to “Share With Shirley” in which I asked MBCN website users to identify metastatic breast cancer patients’ needs which, if met, could change outcomes in the clinic.  The responses, from email and posts to this blog, were very articulate and thoughtful.

Know that I will share your messages strategically with various breast cancer organizations, researchers and scientists in 2012.

On January 26-27, I will be participating in the “Komen Roundtable for Metastatic Breast Cancer “ in Dallas. Texas.  Komen seeks suggestions from invitees to help the organization formulate and institute ways to help those who have metastatic breast cancer.   As many of you have said, we want large breast cancer organizations to work together and to share with the public the “whole story” about breast cancer—especially metastatic breast cancer.  And, we want the percentage of funds that goes to research that will turn metastatic breast cancer into a truly long term chronic disease increased dramatically.

Stay tuned….more to come!

In the meantime, I urge each of you to be open to sharing your story and the needs of metastatic breast cancer patients with others wherever you are.  We CAN change outcomes of metastatic disease if we speak up clearly, strongly and often.

Let me know what you are doing so we can collaborate.

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5 Responses to Thank you for your input!

  1. Shirley,
    I’m but a three-hour drive and would love to attend to write about this for my blog and/or OncologyTimes. Where can I find out particulars?
    Thanks so much – this will be great,
    Jody

  2. Becky bills says:

    I am interested in locating groups and or women with stage 4 cancer- it had been 7 years for me and thus far I have found a private face book group- a few people in Austin but not a stage 4 group-

    We have stories – we have insight- we need a voice-

    Becky

    • Hi Becky: Have you looked into this mbc support group in Austin?
      TEXAS: Austin
      Breast Cancer Resource Center (www.bcrc.org) 512-544-0900. Sponsored by IV League; peer run; grass-roots group with approximately 50 members. Location for meetings: Austin group meets Wednesdays at Casa de Luz at 10:45 – 12:30 pm, Williamson County group meets 1st and 3rd Wednesday every month at St. David’s Round Rock Medical Center at 6:30-8:00 p.m, and there is a monthly meeting the last Sunday of the month at 2:00 pm at a member’s house. We also have potlucks with families once or twice a year. Direct mail to the group at IVLeagueOnline@gmail.com. There is also a Yahoo group and a Facebook group. Email for details. Please confirm meeting times and places before you come the first time.
      CONTACT: Rayanne Evans at REvans@bcrc.org or call her at 512-544-0904 or call Jeanne Collins at 512-921-9553

  3. Becky
    There are groups in Austin. See our support group list:
    http://mbcn.org/support-resources/category/support#in-person-groups-for-mbc

    We agree completely that the mbc voice needs to be heard! volunteer with us and we will see what the best match is for your interests.
    https://events.r20.constantcontact.com/register/eventReg?oeidk=a07e5hr91kk27a9bb6f&oseq=

    thanks!
    ginny

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