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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...

Page 18 of 18 (539 results)

Posts 511 - 539 (539 total)

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

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...

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

Dec 20, 2017 04:37PM kathindc wrote:

Just got an email from BCO. They need $2.5 million to rebuild the site over the next 18 months. They want help reaching thei phase one goal of $500,000 by December 31.

Dec 20, 2017 04:52PM Hopeful82014 wrote:

Is it just me or does that $2.5 million figure seem awfully high?

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-

Dec 20, 2017 06:13PM Traveltext wrote:

Any amount could be spent on this site. But until we understand what is intended it's impossible to assess that figure.

My point has always been that a Silicon Valley outfit would do the work pro bono.


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

Dec 20, 2017 06:25PM Spookiesmom wrote:

thought that’s why they had that awful fundraiser.

Dx IDC, Stage IIIA, Grade 3

Dec 21, 2017 09:15AM Rosabella wrote:

why do they need to rebuild this site? I think it's just fine. 2.5 mil? Wow. Does sound too high. Wouldn't it be cheaper to create a new site and when done link it to move people over?

Dec 21, 2017 09:18AM Rosabella wrote:

pro bono or for cheaper..

Dec 21, 2017 02:06PM Moderators wrote:

Hello All,

We would welcome the opportunity to share with you and discuss our plans and reasons for the rebuilding of Breastcancer.org.

To learn more, please join us for a real-time discussion on Wednesday, January 17th @ 12 noon ET. We will follow-up in early January with video-conference details.

We look forward to connecting with you all soon and wish you happy holidays.

Thanks!

Melissa
To send a Private Message to the Mods: community.breastcancer.org/mem...

Dec 22, 2017 10:40AM - edited Dec 22, 2017 10:41AM by nihahi

Wasn't there supposed to be a "boob-fun-filled" Halloween frolic to raise these funds?

Wasn't there supposed to be a new thread started to continue this conversation?

Why can't the plans just be "put out there" for the entire community to see?


"Comparison is the thief of joy" Dx 10/1991, IDC, 2cm, Stage II, 0/7 nodes, ER+/PR- Surgery 11/7/1991 Mastectomy: Right Chemotherapy 11/29/1991 Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Methotrexate (Amethopterin, Mexate, Folex) Hormonal Therapy 5/31/1992 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/7/1992 Reconstruction (right) Surgery 5/7/1997 Reconstruction (right) Surgery 4/12/2013 Reconstruction (right): Free TRAM flap Surgery 1/8/2014 Reconstruction (right) Surgery 4/14/2014 Reconstruction (right): Nipple reconstruction

Dec 22, 2017 02:45PM Lisey wrote:

Nihahi, because this is NOT a democracy and frankly when you put something to a large group, EVERYONE will hate something. I advise clients to just stick with the major shareholder/decision makers on things like this because otherwise things would take forever and never get off the ground.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

Dec 22, 2017 02:48PM - edited Dec 22, 2017 02:49PM by Lisey

I think what bothers me most is everyone posting and complaining are using a FREE SERVICE and not doing any work to actually make it happen. Sure some of us donate, (and I'm one who has) but it's simply to say thank you for the forum. Why do people feel they have a dog in this website when they only 'use' it for their own benefit? If you hate what BCO becomes, leave. If enough people leave, BCO will evolve to the market they are targeting but this community forum is NOT the market... This community is a HUGE donation to US... let's be grateful rather than so damn complaining.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

Dec 22, 2017 03:26PM Rosabella wrote:

i think this site is easy and fine as is. Adding more bells and whistles which usually is when doing overhaul. I like simple, not so many go here for this and that then trying to get back to where you were is more steps. Jmo

Dec 22, 2017 03:32PM Hopeful82014 wrote:

I agree with Rosabella. While there are a few tweaks that might be welcome, I don't see that a major overhaul is needed, nor do I see the value of investing $2.5 million in doing so. That seems almost obscene to me.

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-

Dec 22, 2017 04:44PM Traveltext wrote:

We're being asked to help and make suggestions on a site revamp, so those of us who want to will no doubt do this. That the existing site is OK is another valid opinion. Lisey, we are making the community section of this site interesting, informative, and popular by being active participants in all the many threads. That is the work that makes this site happen. In any case, BCO is a charity that receives funding from the very pharmaceutical companies that supply the drugs that treat us, so I don't believe we have to feel guilty about whether we are financial supporters or not.


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

Dec 22, 2017 05:05PM - edited Dec 22, 2017 05:13PM by Beesie

$2.5 million, for something that most likely could be done pro bono? $2.5 million, to rebuild a site that is not broken and is in fact working quite well? Yikes, that does bear explaining.

I agree with Nihahi that if BCO are interested in sharing information about their plans, it would be preferable if they could post the information here on the discussion board so that everyone can easily access the information at the time of their own choosing. Of course it's BCO's choice to share this information or not.

Lisey, as someone who has been on the board almost 12 years and who has over 8,900 posts, I can assure you that I have not been using this site for my own benefit. That may have been true for the first 6 months I was here, but since them, most of my posts have been written for the assistance of others. The time and effort I have put into my responses over these years has been my 'donation' to this site.

This discussion board would not exist but for the contributions of people like Traveltext, nihahi, BarredOwl, marie5890, MTwoman, MelissaDallas, djmammo, Annette47, SpecialK, ElaineTherese, Exbrnxgrl, Binney4 and the dozens of other people who selflessly take the time to write posts that offer advice, support and comfort, and who do the research and digging to provide helpful and accurate information to all the men and women who come to this site every day with their questions. To suggest that these people, and all the others who contribute here, are "not doing any work to actually make it happen" is astonishing.

No offense to the people who run breastcancer.org, but frankly when it comes to the rest of the site, I've found other sites that I feel have more thorough, accurate, up-to-date, and helpful information about all the various aspects of breast cancer diagnosis and treatment. So to me, this community forum is what BCO is all about and the forum simply wouldn't exist as it does today, as a thriving discussion board, without the active participation of the board members. Therefore we are the biggest stakeholders in this community forum. We are the community. That's why I agree with Nihahi that BCO should put the information out in a way that it can be easily accessed by all of us who participate on this discussion board. And that's why I think we have every right to voice our opinions, raise concerns when we have them, and offer suggestions as to what we believe will and won't work as the site is updated and changed.

In the end, however, BCO own this site, and they make the rules and they get to decide. Of course.

Edited to Add: I notice that this thread does not appear in "Active Topics". I guess that's BCO's way to limit discussion on these issues.


Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

Dec 22, 2017 05:36PM Traveltext wrote:

QUOTE:

Nov 13, 2017 08:44AM - edited Nov 13, 2017 09:06AM 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.


Mods, did I miss this new thread?


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

Dec 22, 2017 06:20PM - edited Dec 22, 2017 06:22PM by ceanna

traveltext. Yes, they did start a new thread in Nov. I missed it too as I was out of town for a couple of days and it only had 2 replies. I privately asked the moderators after a couple of weeks of not seeing they had started a new thread. Here's the link Provide feedback/advice about our site and campaigns?! It might be beneficial if this discussion moved to that thread so we can retire this particularly unpopular thread subject line. I'll post this same message to that thread to put it in the active list.

I am very disappointed BCO has made no effort to update us (those of us who participated in the last online video conference) and everyone else after the Nov. video chat, but I hope to attend the proposed Jan. video chat to learn more, and, I hope, encourage BCO to actually, meaningfully, hear our voices. They keep talking about how much it will cost, but we still do not have an idea of what they are changing, after telling us in November we would have opportunities for input. I, too, think this model works well for us, and like several have mentioned, we little use the medical portions of the BCO site and keep coming back to the discussion boards to help others newly diagnosed.

Edited to make the link work.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right

Dec 22, 2017 06:51PM kathindc wrote:

Thank you ceanna for the link. It would have been nice if the Mods had put that info here and then made this thread unavailable for posting. Keeping those of us who were active on this topic in the dark was one way not to get the feedback they are asking for from us.

While I found this site useful, I must say that I, too,found the same information on other sites. What attracted me to BCO is the help so many members were willing to give. What keeps me coming back is the camaraderie.

Dec 23, 2017 11:39AM - edited Dec 23, 2017 11:42AM by nihahi

Thank you ceanna for the link.

Lisey...there is so much in your 2 posts that I disagree with, on so many levels, that I sense there is little benefit to even attempt to respond to you, other than to say this...shut up and blindly accept what "decision makers" want to do is a dangerous policy...and not just on BCO. FYI...on the new thread, the mods specifically ask for conversation and input.


Beesie...thank you for another well written and insightful post.

Mods...if you want to move this topic to a new thread, I agree that locking this thread and providing a link is the best way to do so.


"Comparison is the thief of joy" Dx 10/1991, IDC, 2cm, Stage II, 0/7 nodes, ER+/PR- Surgery 11/7/1991 Mastectomy: Right Chemotherapy 11/29/1991 Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Methotrexate (Amethopterin, Mexate, Folex) Hormonal Therapy 5/31/1992 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/7/1992 Reconstruction (right) Surgery 5/7/1997 Reconstruction (right) Surgery 4/12/2013 Reconstruction (right): Free TRAM flap Surgery 1/8/2014 Reconstruction (right) Surgery 4/14/2014 Reconstruction (right): Nipple reconstruction

Dec 23, 2017 05:55PM Traveltext wrote:

From the BCO Facebook page:

https://www.facebook.com/breastcancerorg/videos/10...


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

Dec 23, 2017 06:53PM Spookiesmom wrote:

not everyone is on FB.

Dx IDC, Stage IIIA, Grade 3

Dec 23, 2017 07:25PM Hopeful82014 wrote:

Well, I took a look at that video on facebook and did not find it compelling in the least. If that's a sample of the caliber of work they intend for this site I can state right now that I wouldn't expect to find it any more useful that its current form.

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-

Dec 24, 2017 12:48AM - edited Dec 24, 2017 05:40AM by Wildplaces

... the "decision makers" are not going to be able to make ANY decision if they do not achieve at least a good chunk of the projected donation funds.

I think that is the nuts and bolts of this case.

And saying ignore all opinion of those with breast cancer and the men and women who treat them is absurd.

Worse, it does not work!

Back to two questions:

1. What if any changes would benefit the site?

2. What is the most cost effective and time efficient way of achieving this?

Adding a note on future direction - can BCO, and does it want to as part of its mission, expand its role outside the site in a meaningful and above all measurable, transparent way?



Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/20/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)

Dec 24, 2017 02:31AM kathindc wrote:

Lisey, if this bothers you so much, why do you come back to it. Are we not allowed to voice a differing opinion if we find something like this campaign distasteful? I was going to ask this before when you didn't like the way the discussion was going and came down on everyone but thought twice about it but now I must ask: Do you or did you or a family relative work for BCO? Your negativity toward those who voiced valid concerns leads me to that conclusion. Just saying.

Dec 24, 2017 11:04AM Spookiesmom wrote:

👍

Dx IDC, Stage IIIA, Grade 3

Dec 24, 2017 01:36PM Rosabella wrote:

exactly. It's one thing to make changes, it's your site, but to ask us to help you get 2.5 mil is nuts. Most of us are in a financial crunch and with possibly cuts to the so called entitlements which we as workers paid into, i find this absurd. Like i said, imo the site is fine. Raise funds to donate to metavivor.

Dec 24, 2017 02:28PM Moderators wrote:

Locking now. To continue this conversation, please go to: Provide feedback/advice about our site and campaigns?!

To send a Private Message to the Mods: community.breastcancer.org/mem...

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