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All TopicsForum: Fundraising Opportunities for Breastcancer.org → Topic: Take the Fright Out of Breast Cancer™

Topic: Take the Fright Out of Breast Cancer™

Forum: Fundraising Opportunities for Breastcancer.org — Help support our organization, Breastcancer.org! Please note, this is NOT a forum for fundraising for other organizations.

Posted on: Sep 5, 2017 03:24PM - edited Sep 22, 2017 04:10PM by Moderators

Moderators wrote:

Hello Community!

We started this education and fundraising campaign to address fear as one of the many barriers that may keep people from getting the best care possible. We know we can never remove all of the fears around breast cancer. We know everyone responds to and lives with fear differently. Our goal is to motivate people to courageously and confidently make informed health and life decisions.

GET INVOLVED

Share the facts about breast cancer and breast health found in our toolkit.
Host a fundraising event (make it a Halloween party if you think that will help your friends and loved ones get involved).
Contribute your stories of addressing your own fears of breast cancer (just as no two cancers are alike, there is no one way through it).
Support each other by joining our growing community.

BREASTCANCER.ORG'S MISSION

Breastcancer.org is a nonprofit organization dedicated to informing and empowering people to protect their breast health and overcome the challenges of breast cancer. For more than 18 years, we have provided expert medical information to millions to help reduce the fears and anxieties associated with a diagnosis by providing the most reliable, complete, and up-to-date information about breast cancer, as well as hosting the largest and most active online breast cancer peer community.

YOUR DONATION'S IMPACT

Your support funds Breastcancer.org's educational and support programs. In a moment when many feel overwhelmed by their diagnosis and the critical decisions they have to make about their care, Breastcancer.org is there to answer their most pressing questions about breast cancer and connect them to a supportive peer community when they need it.

To quote Jackie, a Breastcancer.org Community member:

"Whenever I would have a new symptom or a question would pop into my mind, I could always find the answer on Breastcancer.org."

Your generous support is vital because it helps us deliver on our mission. Every gift counts. Give today in support of the millions who rely and depend on Breastcancer.org, not just this October, but every day.

Thank you!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Posts 511 - 517 (517 total)

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Nov 9, 2017 02:17PM Traveltext wrote:


Because I couldn't make the event, I'm looking forward to watching the video summary. However, I'm delighted to hear that the Fright campaign is to be discontinued and I look forward to having some input into site and content redevelopment.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Nov 9, 2017 04:37PM Moderators wrote:

Summary notes from Zoom call:

To wrap up we talked about…

  1. The importance of being heard and being acknowledged as heard needs to be timely
  2. Improving the ways we reach out to you for input, beyond mod's announcement box
  • Repeat the ask to find out why people are engaging with the question/survey
  • Improved technology to bring us better outreach tools to broadcast messages and announcements
  • And of course, excited to use this new format to bring you into planning, and sharing ideas

3. Bring a broad range of voices into the new site development

  • Expand the reach of testing audience with prototypes that can be explore on their own

Some other Ideas:

Collect community members' input on the data that needs to be included in content.

Opt in/opt out for members to have more personalized experience.

Ask for their views on how members use our community compared to facebook groups, or other online communities. What's good, what would be nice to have.

Update the number of active registered members & threads.

Make strong posts more prominent/visible.

Rebuild trust by constantly communicating and being engaged with members, rather than at people.

There are alot of different voices that we need to listen to and we are eager to learn from all of you.

Lastly, perhaps we start a new thread and close TTFO thread.


Note: For those members who joined us, please add things we may have missed in this summary.

And feedback is welcome.

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Nov 10, 2017 11:46PM ceanna wrote:

I participated in the Zoom meeting online Wednesday and felt it was a good start to engaging the discussion board community in ongoing dialogue. I urge the moderators to start a new thread in the next few days to allow input into the website changes BCO is exploring, to allow this "hot" topic subject line to drop out of use. We were told this "fright" campaign will not return.

I feel it is important for BCO to discuss website changes with members BEFORE BCO even starts to propose and start changes internally, and allow the users of the discussion boards to discuss the need for change and give input to the techs as they develop options for changes. It would be great to preview several prototypes and make suggestions for better utilization before they are fully implemented. Many of us remember the "Outbrain" icons a year or two ago that appeared one day, and it took us months to finally have them removed from the threads. My understanding from this meeting is that techs are already working on changes in the full website including the content areas and the threads, but I hope we will have a chance to discuss before it gets too far--I'd rather we participate in the changes and not just be on the receiving end of completed changes. We briefly discussed an opt in/opt out feature to allow those of us who mainly use the discussion area and do not want links to content within the threads to enable a choice about content we see. Expressions that a refreshed website not be another facebook and remain simple and clean in appearance were also made.

I appreciated that Hope and Melissa provided the live chat room to allow us to talk with them and be heard, and that we were allowed to maintain our privacy if we chose by using our screen names and audio and not turning on the video option. Zoom was easy to use so don't let the technology discourage you from participating in the next live online discussion. The suggestion was made that future online discussions happen at different times of the day to enable those around the world to participate at an appropriate time for all.

Wednesday was a start, and I hope it helps to make BCO content and discussion more valuable for all in the BC community.

Looking forward to the discussion in the new thread and hope all join in!

Thanks. Ceanna

Dx 11/2014, IDC, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 12/8/2014 Lumpectomy: Right Radiation Therapy Multi-catheter
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Nov 11, 2017 03:02AM jensgotthis wrote:

Lisey, the Metsquerade event is led by a woman who is fearless in shouting from the rafters that Stage 4 needs more because women and men are dying from it and 30% of early stages will go on to become stage 4. Every penny raised goes to MBC research. And it’s fun. MBC thrivers are not against fun. We’re for transparency, accuracy and not being trivialized. That event is consistent. This bCo one was anything but

Jennifer, 42, Los Angeles Dx 12/3/2015, IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone, Grade 1, 0/12 nodes, ER+/PR+, HER2- Chemotherapy 1/5/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2016 External: Bone Hormonal Therapy 5/23/2016 Surgery 5/25/2016 Lymph node removal: Left; Mastectomy: Left Targeted Therapy 9/14/2016 Ibrance (palbociclib) Hormonal Therapy 9/14/2016 Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy
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Nov 11, 2017 05:51AM - edited Nov 11, 2017 05:51AM by Traveltext

I agree with ceanna, let's get a new thread started to capitalise on the enthusiasm shown here for input to the new site. If the existing thread is to be closed for discussion, that's fine, but I hope it will be archived so that it can be read. There's very few times that I've witnessed such resistance to a new campaign here, and there are lessons to be learned.

I was sent a link to the video conference which I couldn't attend due to time zone differences and thought it was a useful communications exercise although, in future, some discussion topics could be lined up before the next one so that participants could prepare beforehand. It's hard often to think and respond while topics are randomly discussed.

Jensgotthis, thanks for pointing out the differences with the Metsquerade event, it's grassroots origins, and the differences between it and the fear/fright campaign.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Nov 12, 2017 05:44PM - edited Nov 12, 2017 06:06PM by Moderators

Hi All,

Yes, we will start a new thread tomorrow for new BCO things coming up, where we could recruit members for feedback. This will include looking for people to review designs, funding campaigns, etc. While we'd love EVERYONE'S feedback on the new design, we hope you understand that this could be seriously overwhelming Loopy.

We had 20 community members user-test the first ideas - in our Philadelphia and New York offices. We are having 20 + members look at some images this week to provide some feedback. We'll be recruiting around 20+ members to user-test a first developed version in the next two weeks, which will be done via Zoom, so we'll be able to open it up to folks outside of our region. And then another 20 members with the next iterations, and so on.

So, in other words, we really find the 1:1/small group intimate user-testing much more beneficial as we test navigation. This enables us to involve as many invested community members as possible throughout the process, and hear/incorporate their ideas.

At the same time, we'll be reaching out to community members to gather opinions (again either in small group fashion over Zoom or 1:1) about our funding campaigns, and other going's on we are considering.

We have a very large, amazing and talented community, and we want to tap into as many people's insights as possible. With great appreciation and admiraton! The Mods and BCO Team

(and, as always, open to hearing your thoughts!)

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 12, 2017 06:03PM Traveltext wrote:


This is excellent news.

ThumbsUp


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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