I haven’t written a blog post in a while. I set out to write one today and saw that I had a comment from Jenn (see below) on an old blog post entitled: Komen Please Leave Me Alone
Here is Jen’s comment – I just had to share (you will find my response to Jen below her comment).
| Jenn |
Submitted on 2012/10/09 at 8:18 PM
Truly sorry that you had an awful experience with NY Komen. That never should have happened – and wouldn’t happen at many other affiliates. I am confused though. Do you want the money to go to patient assistance or to research? Yes Komen ONLY gives 20-25% to research because the other 75% is granted out to the local communities. And Komen gives more to breast cancer research than any other group outside of the government. As for not getting finanicial assistance to help you that depends on the grants in the area. If no one applies for a grant to do this then what is Komen supposed to do? I agree “For the Cure” is misleading but who knew 25 years ago how complex breast cancer was. We all hoped for a quick and easy cure – now we know with science that it will take more. As for the emails from Komen – I suggest you use the unsubscribe button at the bottom of the email and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on… |
Panera Bread is supporting Dr. Susan Love’s Army of Women – Good for them! (Photo credit: Wikipedia)
Hello Jen,
I think you are the one that doesn’t know what you are talking about. First of all, Komen does NOT give “20-25% to research”. Your numbers are wrong. To answer your question: “Do you want the money to go to patient assistance or to research?” here is my answer: I want Komen to stop being a fraud. I want Komen to stop claiming to be “for a cure” when they are not – no organization that puts more than 80% of raised funds to things OTHER than research can claim that they are “for a cure” for cancer. That just doesn’t add up. I want Komen to stop misleading all of us. And, I want Komen to stop claiming that they help patients with their treatment costs when in fact you can’t ever get anyone to call them back – ever.
You need to read more carefully – Komen’s marketing people are emailing me directly – they use the email contact through this blog to contact me. It is not the email list that bothers me – you can unsubscribe from that once you find out that all Komen wants is your money. The emails from Komen that I am referring to are the ones that they send to me directly through this blog – from their PR and Media people trying to get me to stop telling the truth about Komen. That is despicable. They never answered a single phone call, never returned answered or returned any calls when I called their patient support line over 100 times – but when I complain about that publicly and call Komen out for who they are – I get email after email from their PR and Media people. Just a little disingenuous don’t you think?
You don’t know what you are talking about. I haven’t found a single chapter of Komen that has anyone that will take your call or return your call from “patient assistance” – if you ask me – it simply does not exist.
Anyway, the NFL and others have figured out that Komen is NOT worthy of support. Haven’t you noticed that with many large organizations Komen has been replaced (the NFL supports The American Cancer Society now – they dumped Komen this year). Many other organizations have followed suit. Now when I see a pink ribbon on a cup at Panera Bread I smile because I know that the money is going to something worthwhile – Dr. Susan Love’s Army of Women.
I am thrilled to see that Komen’s stronghold is starting to diminish. I was one of several people that asked for Nancy Brinker to step down. I know she is still there – but she has been rightfully shamed.
I am glad that you agree that “For the Cure” is misleading. Komen is misleading and they only respond when their is huge public outcry. It used to be when I criticized Komen that people would take offense (I am in Orange County where Komen boasts one of its largest chapters) but, now times have changed. Most people I talk to now are on to Komen. No one likes it when they hear that according to Reuters only 14% of the money Komen raised went to research. In fact it is making people pretty angry. It is nice to see that the climate here in Orange County has changed. It is making room for organizations that really do help people get funds. Komen is losing ground and I would like to think that I have been a part of that – that is awareness – making friends and family and blog readers aware of what Komen is really about.
Your last sentence: “unsubscribe . . . and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on” is priceless. YOU clearly don’t know what “really” goes on – what really goes on is that Komen only donated 14% of the money they raised in 2011 to research. You can claim all you want that Komen donates more money to research than any other organization but the truth is that they pocket the money and dump it in to salaries and “awareness” and “education” (whatever that is). People are dying. The fact that Komen only used 14% of the funds that good hearted peopled donated “for a cure” to actual research is despicable. They have taken the lion’s share of the money raised for breast cancer research, and instead of putting it towards research, that money goes to six figure salaries, pink-porta-potties, pink golf carts and failing races for the cure.
‘nough said.
cancerfree2b 
Excellent response!
Thank you! All the best to you!
XOXO
Lisa
It is apparent that it doesn’t matter what other information someone wants to provide. I agreed that you never should have been treated that way. I am also a survivor of triple positive breast cancer and I advocate daily for women. I was simply trying to point out differences in the numbers you have versus what is filed with the IRS etc. At least in my local area, Komen has never paid money for pink garbage cans etc. I was trying to educate on the specific things Komen should be doing etc. Instead I got attacked by you about my post. If you hate Komen then hate them but don’t attack me because I gave you facts you don’t like.
I didn’t attack you Jen – you attacked me. My numbers are correct. Reuters reported (based upon Komen’s IRS filings) that Komen only put 14% of the money raised in 2011 towards research. Those are the facts. I am glad that you did not have my experience with Komen – glad that you apparently did not need their help because if you did, you surely would not get it. I am not the only one who was treated this way – in fact, I have no evidence of any other kind of treatment from Komen. It is all smoke and mirrors and MONEY.
If you are an advocate for women then perhaps you should look into this in more detail because Komen does not deserve your support. I realize it is all very enticing – the pink ribbon parade that Komen puts on. But, the reality is that they are preventing a cure from happening by having been THE place to donate money for a cure. That is the problem I have – that they claim to be “for the cure”, that they market so successfully to be THE organization that gets all of the money (on the basis of being for “the cure”) and then they spend over 80% of it on things that are NOT for a cure. By doing so, they keep money that was intended for research away from research. They have received the lion’s share of donations for breast cancer research and they have squandered it. And sorry, but they do pay for pink toilets, pink golf carts and their races for the cure have LOST money.
Lisa, I’ve been keeping a low profile lately, but I’ve got your back. Just wanted to tell you that. xoxo, Kathi
Hi Kathi,
Awe Kathi, thank you so much, I am only just now seeing your comment. And me too – on both accounts 1) keeping a low profile and 2) having YOUR back. 🙂 Thank you so much for your comment. It means a lot. I have struggled and struggled for several months now, nearly half a year I think, with being able to write here, or anywhere, about cancerland. It has just been too hard. I feel guilty about that – not writing . . . and, I even feel guilty for feeling guilty.
XOXO, Lisa
Lisa, we have to take care of ourselves first, the best way we can. As I write this, I’m trying to compose a blog post about blogging in cancerland and dealing with social media and how overwhelming it can all get. I’m trying to remind myself of some home truths lately, and just sort of stumbling along on my own blog. Not sure where I’ll come out, but the blog has to help me first. And when it doesn’t, then it’s time to step back. Our blogs shouldn’t be a burden. Much love, Kathi
Kathi, You are so right. But, of course you are 🙂
Thank you for your comment. The blog was such a help to me and then for a time it became a problem because I felt like I could no longer do anything but get better (and better and better and better) all of the time. I couldn’t have a bad day, couldn’t write about bad days or struggles anymore because I am not supposed to have them now, after all it has been nearly 4 years since I was diagnosed, I have been done with chemo and herceptin and surgeries since 2011 so it is time to “get over it”. I have felt like to echo anything other than that message is letting down my friends and family who expect me to be well . . . like I am a downer. But, cancer just doesn’t end and we go on unchanged, unaffected or unlimited. I am happy to be able to do all that I can do, but, it is pieces of my former life and I have to accept that (while at the same time I don’t and won’t accept it). I guess what I mean is that I DO have to accept that there are limitations for me now that I didn’t have before, that I wish I didn’t have and so I must adjust. I also still hope for much more, much less pain, much less being tired, much less worry, etc., etc., etc.
You are so right, our blog can’t be a burden. I need to just be able to say what I want to say and let the chips fall. I do have some friends/family who just don’t get it . . . they don’t get that I just can’t keep up. I put on a good show I guess (LOL) but, after the show, I need to sleep for a quite a while sometimes. So it is always these choices – and I can’t keep up.
Oh, and the business I shut down, well where I used to have an office my former office mates were having a Christmas party today . . . I completely missed it, completely forgot all about it (actually, I thought it was tomorrow – had figured out what to wear, etc. and just realized it was today). Sigh. And I really wanted to go too . . . but, that post cancer – forgetfulness, being overwhelmed and having difficulties keeping up with people’s expectations (including my own). So now I am that flakey person that says they are going to be somewhere and is a no show.
If I didn’t have to work, then I could put that effort and commitment into my personal life and meet those obligations. But, instead it all goes to work (and at least, thankfully, I don’t screw that up)! 🙂
Well, sorry for the long, long reply.
I don’t know where my blog will wind up. I would love to have serve the purpose that it used to for me – relief. But, I don’t know if it can be anymore.
I look forward to your post on blogging and social media. I too find it a bit mind boggling. There are so many advantages and yet, it can be crazy making. I don’t know how to stay on top of it all. I use it in my business and in doing so I work on it every day. But, that is easy because it is natural to force that since it is work and not a personal expression of something.
But to try to impose that same kind of regimen or routine on my personal blog would not work for me.
Again, sorry for the longest reply ever 🙂
Looking forward to reading your post!
XOXOXOXOXOXOX
Lisa
I have nominated you for the Very Inspirational Blog Award. Check it out here: http://anotheronewiththecancer.wordpress.com/2012/12/07/inspirational-blog-nomination-2/