PEOPLE TRYING TO TAKE CREDIT

[thereishope]

For the record, I do want to say that I appreciate you trying to learn all you can about PANDAS and to get the info out correctly. I can tell you trying to do that.

 

I have said it once on this forum and I will say it again. The video clip of my daughter reading "saving sammy" on the Today Show WAS NOT a set up! We were given the book by a staff member while we were at NBC studios that day-literally 10 minutes before they asked if they could shoot some video of Lauren "just being Lauren"! Lauren loves to read, so she immediatley picked the book up and started reading..what they did with that video clip is beyond are control. Up to that point I did not even know who Beth Maloney was nor did I know she wrote a book about PANDAS. The first time I heard the word PANDAS was that day! Sorry..to disappoint anyone who thinks it might have happened any differently. The rest is history.

 

Glad I don't have a facebook page regarding..YIKES!

 

I appreciate what people are doing, Beth, Marcy, all of them. I just hate when people loose their focus. I don't think those people have been through one speck more than any else has. We all have kids with PANDAS, we've all been there, done that. Just strikes a nerve when money comes into play, and it DEFINITELY has for some. Perhaps I should zip it! But are you all on FB with these people? Its amazing.

 

Anyone noticed the publicity that PANDAS is getting is creating this little strife of 'who is getting the word out' best? I've read different things people have posted places, i.e. facebook, internet, their own websites, so patting themselves on the back. They are so happy 'they' have gotten the word out, etc. Like with the sneezing girl, I know they showed a clip of the girl holding the 'Saving Sammy' book but that was after hundreds of emails that show got because every parent of a PANDAS kid that saw that immediately said, 'oh look that's a tic, she was sick, she may have PANDAS'.

I sincerely hope that people are not taking this horrifying disease and trying to profit off of it! Or somehow make some type of personal gain off of it. That would be wrong on sooooo many moral levels!!!

Just like the other day when we all got an advertisement in our in boxes on here. Is nothing sacred??

This is rather frustrating to me.

[P_Mom]

I don't know about you guys...but I could care less who takes credit...makes a bazillion bucks, etc....I just want my kids well.

[bubbasmom]

But when taking credit becomes the focus the focus is no longer making your kid well it's about the bazillion bucks.

 

I don't know about you guys...but I could care less who takes credit...makes a bazillion bucks, etc....I just want my kids well.

[bubbasmom]

YES ABSOLUTELY. I DELETED IT BECAUSE I HAD NO INTENTION OF UPSETTING THAT MANY PEOPLE. I WANT THE FOCUS TO STAY ON THE KIDS NOT THE MONEY WAS MY ONLY POINT.

 

just want to be sure everyone is aware that the original poster deleted her own first post on this thread

 

this was not a moderator deletion!

[P_Mom]

Taking credit only becomes the focus if YOU allow it too. This may be true for some folks, but, for me I can guarantee you that making my children well will remain MY focus. Sure, some may focus on the bazillion bucks, etc....but, that doesn't mean that is the story for you...right? You can't control how other people react or handle things...but, you can control yourself and do what is right by your family.

 

I do understand the point you are getting at and how it can be upsetting....however, keep YOUR focus on yourself and your child....the heck with the other folks that are making you upset or who MAY have other intentions.

 

 

And Chemar is right....unfortunately MONEY is always involved!!!

[Joan Pandas Mom]

If 8 weeks ago I had not heard of Saving Sammy on the Today Show, my son would probably still be misdiagnosed. It has been 6 long hard years of this for my 15 year old son, family and friends. I am so very grateful to Beth Maloney and the work she has done. Because of her getting her story out she may have saved my son too.

 

 

 

 

Anyone noticed the publicity that PANDAS is getting is creating this little strife of 'who is getting the word out' best? I've read different things people have posted places, i.e. facebook, internet, their own websites, so patting themselves on the back. They are so happy 'they' have gotten the word out, etc. Like with the sneezing girl, I know they showed a clip of the girl holding the 'Saving Sammy' book but that was after hundreds of emails that show got because every parent of a PANDAS kid that saw that immediately said, 'oh look that's a tic, she was sick, she may have PANDAS'.

I sincerely hope that people are not taking this horrifying disease and trying to profit off of it! Or somehow make some type of personal gain off of it. That would be wrong on sooooo many moral levels!!!

Just like the other day when we all got an advertisement in our in boxes on here. Is nothing sacred??

This is rather frustrating to me.

I'm afraid that's just a part of life here-everything gets exploited for somebody's profit. Capitalism at work!