Komen Only Responds When the World Notices . . .

9 Mar

Like many nights, I could not sleep last night.

So after tossing and turning, I decided to open up my trusty laptop and catch up on some things. I opened my email account: nomorecancer4me@gmail.com

(I know, it has a nice ring to it, doesn’t it)? If we could all just wish ourselves to being well forever, now that would be something.

Anyway, I digress.

To my shock, I received an email from Julie at Susan G. Komen at Orange County. WOW. Her email was in response to my post of last October asking Susan G. Komen to leave me alone

Here is what Julie had to say (and to be fair – you might want to read my post above first):

“Hi Lisa,

 I’m writing regarding a blog post of yours referencing our affiliate:


I’m very sorry to hear your frustration with us. I am new to Komen and was disappointed to read about how you weren’t able to get help from us in the time you needed it most. In reading your post, I understand that you would like for us to no longer contact you. My guess is that you registered for one of our Race for the Cure events and are now on our database. Did you register with the “nomorecancer4me” e-mail address? Just trying to make sure we take you off of our list per your request. Rest assured I want to do everything in my power to make sure this doesn’t happen again.

On a personal note, I wish there was something we could do NOW to rectify this. I am very sorry for how things turned out. Again, being new to the organization can only do what I can now.

If there is ever anything I can do to help, please feel free to reach out.”

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

T: 714.957.9157 Ext. 30 | F: 714-619-2678

Wow, do I ever have a post coming in response to this. For now, I will simply share some of what I wrote to Julie at 3:00 am in this morning.

“Hello Julie,

So, let me get this straight – the person (you) who was chosen to respond to me is someone that is “new” and can only “do what you can now” which is apparently limited to taking me off of your email list? I am sorry, but, this is so sick to me.
You say that, “on a personal note” you “wish there was something that Komen could do NOW to rectify this” . . . Okay, I am ALL ears . . . what can you do, what can Komen do, to rectify this? How can you help me “NOW” as you put it (the emphasis was yours)?
I received nothing from Komen. I spent what little energy I had during treatment barking up a tree that your organization encouraged me to bark up and instead of getting any response, I was simply ignored. Where do all the millions go? Rachel was on to Komen long ago. And now, since the Planned Parenthood fiasco – many others are too. I am not alone in my outrage.

Please understand that it is hard for me to even respond to your email when I feel that the only reason I am finally, now, hearing back from anyone at Komen is due to the fact that I spoke out, spoke the truth and that this truth got traffic. It was fine to ignore me when I was weak and sick . . . too weak and too sick to spend precious energy writing the truth. I may be broke now, but, I am strong and I am angry – not at you personally – but at the fraud that I believe Komen has become.

But, since you asked me to “reach out . . . if there is anything you can do” . . . well, I am reaching out NOW (AGAIN). Finally, after two years someone has responded to me directly. Sadly, it only happened after my blog post received thousands of visitors (this same post still receives thousands of visitors and gets retweeted around the world). I would love to be able to tell a second truthful story about Komen that paints a different picture – so here is your chance, Help me. Help me like you (your organization) claimed you would help. Come through on the promise that was dangled in front of me, that caused me to call over 100 times to the help line that NO ONE EVER answered.
As anyone who has been through cancer knows, it wreaks financial havoc. I had to shut down a business for nearly two years, I ran through all of my savings, I no longer have a car that is working properly, I am broke. I can not afford to maintain my health insurance. I can not afford my prescriptions, I can not afford the gas it takes for me to get to my oncologist. I needed help when I was going through treatment and I need help now. The stress of unpaid medical bills and the stress of not being able to make ends meet is a great burden. Stress is not good for anyone, and it is especially not good for cancer patients.
So, what can Komen do for me? I don’t need pink ribbons, I don’t need 5k walks with rose ceremonies. I need something concrete, something tangible. We all do. In 1994 I lost my Aunt to breast cancer. I found it odd back then that your organization didn’t seem to be able to do anything for her, no support. And yet, after she passed away, I ran your 5ks in her honor, thinking, believing – like so many – that this would somehow make a difference to women in the future. After all, you are “racing for a cure” right?
I am not saying Komen has done nothing good. I am saying that Komen does not do enough AT ALL. The money is squandered. At least that is what I believe. And to brag – as your organization bragged in 2009 and 2010 when I was going through chemo and radiation – that you helped women financially – and yet you never answered the phone – well, that is just about as ugly as it can get. (And by the way, this is the only phone number that was provided at the time and only point of contact for all of this financial assistance your organization claimed to provide. There was no way to leave a message, no email contact, no online form to fill out to ask for help – those things only exist for your donors. There are plenty of forms and live people to reach if you are a donor – why you are simply a click away to those who want to donate money).
I am angry. (I am sure you don’t need me to tell you that). I am not personally angry at you. But, I am angry at Nancy Brinker and I am angry at the organization that I once blindly (as once did my family and friends) supported. Many people are angry and share my outrage at being mislead. I want to see a different Komen.
You told me to “reach out” to you for help. I need help. I am reaching out. So I will wait to hear back from you. 
Please help me.”
So, that is basically what I said (at 3:00 am). Not the most well thought out email and perhaps I should have saved it as a draft and edited a bit before I sent it out. Had I taken more time, I would have addressed this point in Julie’s email to me:

“Just trying to make sure we take you off of our list per your request. Rest assured I want to do everything in my power to make sure this doesn’t happen again.”

So Julie’s big concern is that she makes sure “this never happens again” – that Komen never hits me up for money again. WOW. I see their point, why should they waste their time asking me for money when they know they will NEVER get it from me again? But, why is it that Julie is not concerned about making sure there is a person to answer their phone at the number Komen provides in their claim that if you call that number you can get financial help? Why is it that Komen never responded to me, EVER, until my blog post was read by thousands? Why is that when they do finally contact me, that it is a person from marketing?

Hmmm . . .


9 Responses to “Komen Only Responds When the World Notices . . .”

  1. Stacey March 9, 2012 at 9:57 AM #

    Lisa, that email from Komen seems very…odd? A personal note like that after all this time and from someone unable to really help. I don’t know, it just doesn’t ring true to me, but then again, we are talking about Komen. Love your reply, unedited or not, for telling the truth. Hopefully, someone there will begin to pay attention. Wonder if you’ll hear back. xoxo

  2. AnneMarie March 9, 2012 at 3:57 PM #

    Five months later??!? It makes ME wonder who is sitting at a computer googling every possible combination of words to find all the places where SGK is being mentioned to see what angle they might take to rehabilitate the brand as they say in PR and marketing. Hmmmm, indeed!

  3. Nancy's Point March 9, 2012 at 5:31 PM #

    I’m sorry you had trouble sleeping. There seems to be a lot of that ‘going around.’

    Good for you for responding with honesty. Komen needs to hear people tell it like it really is. Sometimes not editing our first reaction is perfect.

    Let us know if you hear back.

    • Anne March 10, 2012 at 7:36 AM #

      If one person can make a difference in this world, then you should stand proud because you are making a difference. You are awakening people to a fraud.

      When the whole Planned Parenthood saga came up, that’s when I knew I would never support Komen again. If I had been reading your blog at the time, I would have ended my support before that.

      I lost a friend two weeks ago from breast cancer. I have a cousin who is a survivor of breast cancer. My mother is battling colon cancer. My beloved brother died 10 months ago from brain cancer. Cancer sucks! I want to see a cure for all cancers. And, I want the money that is raised for these cancers to go to “the cure” and to those who the cancer strikes. I don’t want it lining the pocket of some executive in a cushy office somewhere who drives home to his/her mansion in their Mercedes. I want the money raise to go to research to cured this damned disease and to people like you, who need the financial help to beat this horrific thing.

      I’m not a religious person, but I pray for you that you get the financial assistance to help you to beat this cancer.

  4. DeFund the Komen Foundation March 10, 2012 at 6:58 AM #

    Thanks for providing an excellent top-post in our Facebook group, “De-Fund the Komen Foundation.” If you aren’t already following us, you might want to do so. We’d love to have you relay more of your story.

  5. Julie Anita March 10, 2012 at 7:07 AM #

    Wow. Definitely waiting to see if she responds! Good for you for saying what needed to be said.

  6. David Schwartz March 10, 2012 at 11:26 AM #

    Only around 10%-15% of the funds donated to “funnel” organizations like Komen ever find their way to their intended beneficiary organizations. The rest are eaten up as salaries and overhead expenses. In effect, they run a business where their “profits” are donated to organizations like Planned Parenthood.

    The strange thing is that so many of the people involved with their fundraising are unpaid volunteers, begging the question … where does the money REALLY go?

    If you believe in Komen’s causes, but not their insensitive and misguided actions, there’s a simple solution:

    Give your donations DIRECTLY to organizations like PPH. If you raise money for “the cure”, give it to organizations doing research or supporting people undergoing treatment or any number of things.

    Just do NOT send it to Komen!

    Their recent fiasco with PPH generated a huge influx of funds to PPH. If those same funds had gone to Komen first, PPH would have only gotten a fraction of them.

    All in all, these kinds of organizations do little for anybody except give their employees a steady paycheck.

    Spend some time learning about organizations that you’d like to support, then support them directly. Let Komen’s employees find gainful employment doing something truly useful somewhere besides leeching off of the donations of well-intended donors who think most of their monies are being used for advertised purposes. They’re NOT!

    Stop supporting parasitic organizations like Komen and give your monies to organizations that are actually doing the work and helping people directly.

  7. jen March 10, 2012 at 9:45 PM #

    I’d love to see what her response is this time (if any, of course)!

  8. gabbymottershead March 13, 2012 at 1:48 AM #

    Reblogged this on Gabbymottershead's Blog.

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