LCA - I am Peed off - Discussion - Lung Cancer Alliance Survivors Support Community

I just want to thank everyone on here who has been of tremendous help and support.

Mom is in the final stages of death.....it is anticipated in only days.

I received a warning from Facebook today, stating I violated LCA trademark and my group was being deleted. Granted I probably shouldn't have used the logo, but In my despair and wanting to bring more awareness, I created a group to try and raise awareness to this cause. I never claimed to be an official of LCA and included their information so others could be directed to their organization.

Call me stupid for wanting to do something good. Seems like you can't do anything these days without fear of being sued.

I feel like I have been punched in the stomach while I am down. I had planned to ask for memorial donations to be donated to LCA, but no more. They will be directed else where.

So with this, I am writing to thank you all and wish you all good luck with your journeys and battles. I will no longer be active on this site. Thankfully (or unthankfully, depending on how you look at it) our battle is almost over and soon mom will be at peace.

Thank you once again,

Sincerely,
Tammi L. Duzan (aka Hoosierxheart)

Here is the letter I received along with my response:

FW: Facebook Warning
Duzan, Tammi L
This message was sent with High importance.
Sent: Friday, May 16, 2008 8:17 PM
To:
volunteer@lungcanceralliance.org; info@lungcanceralliance.org
Cc:
copyright@facebook.com
Attachments:
Hello. I would like to apologize for using your trademark in trying to create more AWARENESS for Lung Cancer and the Lung Cancer Alliance. This was just one small way I felt I could bring more attention, since your organization does not have any type of posting within this very large network of people. I never in anyway shape or form, claimed to be associated directly with LCA and included info so that people could be directed towards your site for more information. A site which had been of tremendous help to me during this difficult time, until now.

Based on this, upon my mothers death from Lung Cancer (which will be just a matter of days)..... I will be sure that memorial donations are NOT directed to your organization as had been planned. I wouldn't to break any other rules.

Sincerely,

Tammi L. Duzan

PS - Please remove the image of my mother, Judy Kennedy, from your Faces of Cancer profiles. Thank you.

________________________________________
From: Facebook [warning+fllg=rf1@facebookmail.com]
Sent: Friday, May 16, 2008 7:47 PM
To: Duzan, Tammi L
Subject: Facebook Warning

Hello,

We've received a notification of alleged trademark infringement related to your group "Lung Cancer Alliance." Based on this notice, we were forced to remove the that you had supplied for this group. A redacted copy of the notice follows:

"A Tammi Duzan (Indiana) has created a Lung Cancer Alliance facebook group without authorization or legal release. This group contains our trademarked logo, intellectual property and company information and purports itself to be a
representative of Lung Cancer Alliance. We would like the group removed immediately."

If you have any further questions, please feel free to contact copyright@facebook.com.

The Facebook Team

By CKP
Posted May 16, 2008 at 10:18 pm
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I don't blame you. I would have hoped LCA would have contacted you directly since you are a member here, and not reported you like that.
This site has changed.....

I'm sorry about your Mom.

Hugs,
Cindy

By kosby
Posted May 17, 2008 at 10:16 am
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I totally ujnderstand how you feel - it;s darn if you do, darn if you don't. In our sue happy society sometimes people lose sight of the good intentions.

Too bad we can't get the AP (Associated Press) to pick this up and give Lung Cancer some additional attention.

kosby

By tduzan
Posted May 17, 2008 at 9:48 pm
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Ironically, not even a half-hour after I posted this email, did my mother pass away.

She passed peacefully at 9:00pm at home. I guess I have no need for this site anymore, anyway.

By D1
Posted May 17, 2008 at 9:55 pm
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Dear Tammi,

First, I am so sorry about your Mom. And, I'm also very sorry that you were treated so rudely and insensitively at such a difficult time in your life. I can understand why the site needs to protect their rights, but they could have contacted you in a kind and sensitive way. I rarely post any longer. I'm afraid of the site wardens, too. Tammi be strong....Love is eternal.

By hermanade
Posted May 18, 2008 at 12:02 am
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Honestly, D1,

It's hard to tell whether you're taking care of tduzan's feelings or running an inflammatory agenda of your own--e.g."I'm afraid of the site wardens, too."

I think true altruism would be urging tduzan, now more than ever, to distill some comfort and nurture from the abundantly kind people, here on this site. And that includes the "wardens," too, whom I think don't moderate for fortune and fame but for love and empathy and with an eye to keeping lung cancer on the advocacy and research radar. Your inclination to throw the baby out with the bath water takes my breath away. Hard for me to assess what Tammi (?) experienced, but it cannot be productive for you to undermine the people who moderate this site.

Rethink your posts which might be injurious to people who have come to depend on this site to maintain/attain some sanity and self-preservation while in the throes of painful, painful stuff. In fact, I believe that some members' lives depend on what they find here.

Hermanade

By D1
Posted May 18, 2008 at 8:06 am
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Dear Hermanade,
You are absolutely RIGHT; my own experience colored my response. I try to read all the posts to keep up on the people I know and care about, but I rarely post any more because I was attacked by the site moderators. I guess reading Tammi's post struck a cord with me. I certainly don't want to hurt anyone.
But, isn't it sad that Tammi rec'd communication like this at such a vulnerable time in her life? I think her motives were pure, and I think there would have been better, more MATURE and SENSITIVE ways to deal with the situation. Thanks for the reminder. Like I said, I rarely post any more.

By Jolene
Posted May 18, 2008 at 11:58 am
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Tammi, may I send to you my deepest sympathy at the passing of your mother. The months ahead will be painful. Know that her pain is forever gone and she is basking in the rewards our Lord has promised.

I am sorry that you have had difficulties with using the Logo. As with all organizations, there are rules and while I can see your side, I can see theirs as well. We must all remember while there are those who are pure of heart like Tammi, there are those who are not.

Here is why I feel they responded and I hope others understand this as well. Let's say someone named,
oh, Toad used the Logo and put ads in the paper for donations toward lung cancer in his area. Toad is very wise in how he markets his Logo and others respond with generous donations of thousands of dollars.
Toad uses the money to buy a speed boat. Those who contributed then sue the organization who owns the rights to the Logo. Money is lost that could have helped us solve lung cancer. I don't think they meant to hurt you, nor they you. It is just how the world is.

Please, do not let this stop you from coming here. We need you and you need us. Together we weather all storms and this is just one of them. Hugs from a friend in Iowa. Jolene

By rabbit117
Posted May 18, 2008 at 2:42 pm
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Dear Tammi,

Please accept my condolences on the loss of your mother. I am so sorry for you and your family.
On Friday, I too lost a very good friend who fought lung cancer for 17 years. You may have heard of her: Anita Johnson. She became my phone buddy seven years ago after my second bout with lung cancer and became my real buddy very quickly. She was one of the pioneers in lung cancer advocacy - one of those unsung heroes who really got the movement started just by their sheer persistence and hard work. She was also one of the funniest women I ever met. At least 2 or 3 times a week I would receive an absolutely hysterical email from her.
I also relied on her good advice. She never sugar-coated anything or minced words. She would talk frankly to the most important lung cancer oncologists and surgeons in the US and she knew what she was talking about as well. Anita always did her homework and was one of the best informed advocates I ever met.

I write all this by way of apologizing for the added pain that the very rude message from Facebook must have caused you as you were going through such a terribly painful time with your mother. Because of Anita, I work with Lung Cancer Alliance. She would have been appalled at the message you received, as I am.

Please let me find out on Monday exactly what happened and get back to you and all the members of this group.

By hermanade
Posted May 18, 2008 at 2:46 pm
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D1,

I appreciate your graciousness. Tammi, I would urge you to communicate with LCA about what happened. Mostly, I think it is a loss for you and LCA were you to discontinue her relationship with LCA.

And I also think that it relevant to remind everyone that LCA, whatever faux pas it might commit (and I don't have enough information regarding what happened with Tammi), has its heart in the right place and is attempting to put lung cancer on the funding map--seems an imperative, really, to support them especially considering that an agency like the CDC (Center for Disease Control) appropriated nothing, not a red cent, for lung cancer, last year. Breast and prostate and colon, etc., cancer, by contrast got subsidized by the CDC.

It is an exquisite day here in Northern California--hard to reconcile the day's beauty with all the suffering evinced here on this site. My little boy is in a sailing regatta, so I will stop pontificating and go enjoy the day.

Tammi, continued healing, and safeguard your own well-being.

Best.

By pattyp1
Posted May 18, 2008 at 7:46 pm
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oh, Tammi,
I am so sorry for your loss. Doesn't it just seem that life gangs up on you at times like this? Know that we are here and love you and wish to support you.

Also - you have earned a lot of education the hard way. May I suggest you hold your hand out to help someone else that is new on this awful path? That was the advice given to me when I lost my dad - and I have made some wonderful friends. It doesn't make me miss my daddy any less, but it does let me smile.

So....ignore the bad stuff...you have enough on your plate right now...and accept some big fluffy bear hugs.

Pat

By Beth
Posted May 18, 2008 at 8:08 pm
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That is sad and Facebook should have handled it better. Since this did not happen on our site, our moderators were not involved so there is nothing I can do personally. However, I would also encourage you to speak directly with LCA. I can provide contact information if you would like.

I am sorry that happened to you, please accept my condolences for the loss of your mother.
Beth, TeamInspire

By amymaura
Posted May 18, 2008 at 9:00 pm
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Hi guys,

I'm sorry I was unable to reply to this sooner. I have been away at a conference and without computer access since Wednesday last week.

Tammi, I am so sorry for the loss of your mom. I lost my mom from this disease too. The loss is still on my mind every day, even after 4 plus years.

I understand from Kay - who is LCA's Director of External Relations - that a warning was sent through Facebook because there was no contact information on the Facebook page that would have allowed them to contact you in any other way. I'm sorry that the contact with you was made in such an abrupt way. I know that Kay wishes there had been another way to contact you as well. She too lost a parent to lung cancer, so knows of this loss on a personal level.

My role at LCA is part of the two person team that handles all of our Patient Support Services. This community is only one of several patient support programs that we have, and I am the only person from LCA who regularly monitors it. This also means that I am the only one at LCA who has a fairly high level of familiarity with who is linked to us through the online community. So when things are found on Facebook or any other place that raise alarms (for example if we do not know the person who is posting things therefore we have to protect ourselves), the people who find these things don't always know that the person is associated with us through the community. It's not an ideal situation, but we are a small office with a whole lot of things going on, and we each have different sets of tasks. I hope that makes sense and maybe further explains how this happened. If I had seen your name on a website, I would have been more likely to recognize you than anyone else at LCA because I spend a lot of time here.

If folks here are interested in raising awareness for lung cancer, absolutely we want to hear about it and be helpful. Our Development Director is constantly talking to people, brainstorming ideas for awareness and fundraising. We have an advocacy toolkit that we provide to people who want to take action, and Kay is really excellent at linking people to state level advocacy groups and individuals. The thing is, we do a lot of work that sometimes makes us the target of attacks from people who don't agree with what we are fighting for. I know it's crazy to think that there are those who do not WANT more awareness to be raised and more funding to be provided, but it's true. And because of that, we have to protect ourselves - which sometimes results in this kind of missed communication. So if anyone is interested in doing something where you might use our organizations name or logo, please let me know so that I can clear it or work with you to figure out a way that protects both you and us in the process.

The action that took place related to this Facebook page has zero link at all to this community, so Tammi, I would please please please encourage you to stay and get the support you need. I'm sorry that this hurt you. I know that no one intended that.

Please feel free to email me personally at apearson@lungcanceralliance.org if you want to talk some more about it. I will be out of the office for the next two days taking care of my dad who is recovering from surgery, but I will be in close contact with the folks in the office, so I can certainly work to answer any questions you might still have. And if anyone else has questions, I encourage you to email me as well, or send me a message through the community.

Warm wishes,

Amy

By simplyklb
Posted May 19, 2008 at 6:15 pm
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I think that the whole thing was handled wrong. The only way I knew this existed was doing a search thru Google. I am an information junkie and have been since I got on the net thirteen years ago. I don't think that non-profit organizations do enough outreach unless they are big like ACS. And yes, I have served on the board of a non-profit and worked for one.

Tammi,
I am sorry about your loss. My thoughts and prayers are with you.

Kristi

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LCA - I am Peed off

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