A while back, someone posted about the donation that NBC was making to the Lupus Foundation of America (LFA) of proceeds from auctioning off the Today Show green room book. Well, this morning, they actually presented the check for over $34,000 to LFA and interviewed a lupus patient and a representative from the LFA (also a lupus patient, I think). Including this morning's segment, this is the second segment I watched about the auction to benefit LFA. One part was fine, they showed pictures of and told about the woman who died and whose story inspired them to choose to give the money to a lupus charity, though they never did say what specific aspect of lupus had done her in.
The only thing was, here were two actual people who had lupus, one of them who works for a lupus foundation for a living, and I thought they could have made better use of their time before a national audience to inform people about what a diagnosis of lupus can mean. Here is this illness that is a mystery to most of the population and is not even on the radar of most, and the whole segment could have been so much more informative, in my opinion.
I guess I mostly had a problem with the woman from LFA who, when asked what does a lupus patient have to deal with, at first said something to the effect of "it's just so varied for each person, so it would be hard for me to tell you that." GONG! WRONG ANSWER! So, tell the variations, would 'ya? The interviewer then switched to the other woman for a minute, who told Ann that she suffered from severe fatigue and never knew if she would be able to get out of bed on a daily basis and that she had had to quit her job working with children because of this. That was fine. She then came back to the LFA spokesperson again and asked specifically, what are the symptoms of lupus. I remember her saying fatigue, feelings of malaise, joint aches, and rashes. Not to mimimize those symtoms at all, because I have suffered all these myself, but come on, what America needs to know about why lupus research needs additonal funding is that while there are milder forms of the disease, the more severe cases have life-changing and life-threatening complications and can kill because of x-y-z reasons and we need new treatments.
Since the whole reason they were there being interviewed was because this one woman died, it is obvious to the audience that lupus is life-threatening, but I just don't think they did a very good job of explaining to a national audience what the big deal about lupus is. Anybody else see this interview this morning? Maybe I am overreacting, but this frustrated me.
I did not get to see the interview, but my parents saw it. My Mom asked me how to contact the show because they were so confused with the ladies answers! She said it was not very informative and they understood Lupus to be just a "fatigue disease". I am going to try to go to their website and find the interview. What a shame, we finally get some publicity to inform the public, and they bomb out. My Mom thought that the ladies were camera shy or something. I am kind of glad that I didn't see it because I would be so frustrated. How great of NBC to donate, though. If we had more publicity and people really understood the disease, maybe we would have more donations to help find our cure or help someone in need - like with prescription costs, etc.
Thanks for the info!
Good morning, aquanegra & Leslie. I missed the "Today" segment. But why not write to both CEO's (station & foundation), and say what you did here? Plus, shows often have a viewer write-in or e-mail address, right? and sometimes these comments are read on the air. Take good care, both of you. Vee
I think the green room book donation money you refer to was the post I made initially. Superb gesture. I am in the UK so I didn't see the programme you are speaking of.
I agree with you totally though, it is so very frustrating when a great opportunity is missed in this way. I can understand the nervousness of the interviewees, but one would have thought that they would have been prepared beforehand to be aware of the type of questions they would have been asked.
Some time ago, I was so incensed by an article written by a "celeb" in which she claimed - amongst other things - that by diet, exercise that included - wait for it - 'kick boxing' - what? - and energy drinks she had cured her lupus. I contacted the people that published the article, I contacted the hospital which is the Lupus organisation to whom she is a patron and they said that is was so good what she had done. Hello, what ?? I asked the person on the line if they had actually read the article. "Erm, no" was the reply. I suggested they read it forthwith. I also made sure her publicity people knew that she was totally misleading others with this type of statement and it should be brought to her attention. I pointed out that if there was a cure, we wouldn't have doctors who are treating us, doctors researching it and we wouldn't need to be talking about it anyhow.
I asked the trust that she is patron of to please inform her publicity people that I wanted them to make her aware of what she had said and done, and also I wanted her to put things right. It was put right with an addendum to th article. Would she have done though if I hadn't gotten so angry about it? I really do doubt it. I got the satisfaction of the amendment which stated what this person did made her personally feel fitter. All power to her for getting fitter and symptom free/in remission, but the way the article read made out she had cured herself.
The whole point of my going on here - sorry - is that if there is any dissatisfaction with this programme or the way the interviewees came over, then the way to go I personally feel, and as Veej also recommended, is to contact the show direct and the LFA too and let them know how you feel about it. At least then you know that your views are being heard about it, and honestly it's so good to vent about it hee hee !!
Wow, I need a rest now. Seriously though I agree with you, things like this get me so mad too. We must speak out though, this is the only way things will improve.
Have a good day all of you.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 03-21-2006 at 09:17 AM.
Another pet peeve of mine is the financial angle (it seems to be the morning for us to vent): The $ contibuted to charities for dissemination of "knowledge" is being misspent when a golden opportunity like this is missed. Spokespeople really should know how to speak!
Goldenwings, there are certainly some celebrity dimwits out there! We should write/e-mail to any program showcasing their misinformation, too.