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Monday, April 08, 2013

LUNGevity name stolen by a CF patient

I am really frustrated and deeply disappointed that one of the organizations geared to helping lung cancer patients is having to deal with someone stealing their name.  Lung cancer patients don't have many organizations that fight the good fight for them.  It really cuts to the core that a local CF patient is trying to use the LUNGevity name to raise money for her personal fundraising effort for an up coming CF event in North Texas.  The sad thing is she sees no harm in using a name that people associated with lung cancer to now be tied to CF.  I am not bashing CF, but there is next to no funding for lung cancer.... heck when I go to several local stores I am often asked at checkout if I want to donate to CF.  I wish industry thought enough of lung cancer to take up a collection towards a cure when people checked out.  It is stealing to use another organizations name the way this person intends to.

LUNGevity name stolen by a CF patient

2 comments:

  1. Hello Jerald,

    My name is Denise. I am a 56 year old African-American female. I found out about 6 weeks ago that I have stage IV multi-centric BAC. I have been on Tarceva for 4 weeks. The doctors told me that surgery and radiation were out of the question as treatment options for me. My ongologist is with Memorial Sloan-Kettering in New York. Next week I will have a second biospy to determine if I have a mutation that the Tarceva is effective to treat. I had a CT last week and my tumor and nodules have remained aboout the same. I did not read all of you blogs. But, it seems like you had a lung transplant and that you have been a survivor of BAC for over 5-years. This is amazing. How were you able to convice doctors to give you a lung transplant. I brought this up to doctors and they said that cancer patients are not eligible for lung transplants. I would appreciate any recommendations or advice that you could give me. Thank you.

    Denise

    ReplyDelete
    Replies
    1. Your doctor is wrong... I was transplanted and I am now 6+ years out of transplant 7+ years out from being told I had stg. 4 LC. I think the doctors in my case took it personally so they fought with the insurance companies to get me evaluated and then fought to get me listed. The results for LC and transplant aren't very good but the sample data is extermly small. The docs presented my case to many hospitals to see if they would take me on, we got alot of NOs but that didn't deter us I just needed one yes and that came from Stanford Univ. and the rest is history... If you don't have any cancer outside of your lungs you should be in good shape, fight to get listed if that is what hou want to do. Cancer is not hopeless

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