PEOPLE TRYING TO TAKE CREDIT

[bubbasmom]

Deleted

[peglem]

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!

[nevergiveup]

I guess after all of our struggles and years of trying to find someone to understand that our children have something physical wrong rather than psychogenic we all felt at some point that we will write a book when this is all over or go to the press or make a difference. As this disease becomes more known certain individual will be more "in tune" to the ins and outs of publicity and public awareness. Think about what Beth Maloney had to do to get someone to publish a book about a rare disease. Not to mention putting her son out there for scrutiny. I would have a hard time showing those videos to the world. She obviously fought hard to create the "hype" around the illness. Interesting enough is that the tv stations could find a million docs who don't believe in PANDAS and could poke holes and doubt into everyones minds. Some people know how to make lemonaide out of lemons and some people take any situation and know how to make it into money. I had a friend who was an amazing business women in marketing. She was diagnosed with MS around the same time as I. Where I wanted to pursue the best doctors and spend time analyzing the different medicines. She rather picked her drug quickly and became a rep for the drug co immediately and now profits from monthly internet presentation and conferences. She immediately saw her illness as another money making opportunity and she also felt this was her way of helping those who needed more info. However what shocked me most is she was no expert for the drug co only taking the drug one month before soliciting for them. Kind of like what we see on the media lately, they are no experts but they sure do have the personality to sell the stuff. I cannot criticize because I wouldn't think of exposing my dd this way however I thank god someone is smart enough to know how to sensationalize this illness so that it gets the word OUT. We have a very long haul, look at fibromyalgia, Chronic Fatigue, and autism , these diseases are all still under scrutiny with a heck of a lot more press and funding.

 

 

[quote name='bubbasmom' post='47481' date='Dec 6 2009,

[thereishope]

I just get frustrated when we feel we need to clean up the mess and correct every incorrect or incomplete statement. We have to police every tv show and every article written. I know it needs to be done, I just need to start a Word doc with a reply for every wrong statement so I can just cut and paste into emails and comments. It would save so much time!

[bubbasmom]

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.

[laurenjohnsonsmom]

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.

[mama2alex]

Folks,

 

It truly doesn't matter how it gets out, who gets it out, what mistakes are made along the way (and there will be!), who profits, who gets on TV, who gets to feel good about themselves... All that matters is the word IS starting to get out and I think EVERYONE who's child has been diagnosed has worked in small or large way to help educate, publicize, etc. Let's just remember all that matters is that these kids get help and get better.

 

I know there are real frustrations, but

 

United we stand...

[Chemar]

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.

 

bubbasmom

I think it is naive to imagine people will not try to profit off PANDAS just the way they try to profit off everything else

 

my goodness even some physicians are raking in the $$$ from desperate parents and charging outrageous sums!

 

with regards to the antibiotic ads in the message boxes....spammers will take advantage of anything they can and no, to them nothing is sacred. That wasnt a message from a member...it was someone who joined that very day with the sole purpose of spamming everyone.

 

best to just accept the fact that unscrupulous people are always looking to turn a fast profit off everything they can and not let it frustrate you

 

I see people touting e-books on "cures" for Tourette Syndrome that they have clearly put together reading the FREE info we all share

 

that's life....not much anyone can do about it so best just keep sharing and caring here and not worry about who's profiting from it

IMHO however kids get helped...all that really matters is they are being helped!

[mama2alex]

I just get frustrated when we feel we need to clean up the mess and correct every incorrect or incomplete statement. We have to police every tv show and every article written. I know it needs to be done, I just need to start a Word doc with a reply for every wrong statement so I can just cut and paste into emails and comments. It would save so much time!

 

Vickie,

 

I know it's frustrating. I was a PR person in my former life (pre-PANDAS) and you wouldn't believe how difficult it is to get the media to repeat your message. That's why people like me have jobs - it's full-time work. And with something like this, nobody knows all the answers and it's a very complicated subject, so it gets even harder to get the right messages out. Have patience and keep emailing. I think this is a very exciting time and a huge breakthrough has been made.

[laurenjohnsonsmom]

Well said..we're all in this together! What a great bunch of intelligent, resourceful, helpful and kind people that you all are here. I don't know where we would be without ALL OF YOU! That's why this forum is so helpful and usefull, it brings people together for the greater good!

 

THANK YOU!

 

Folks,

 

It truly doesn't matter how it gets out, who gets it out, what mistakes are made along the way (and there will be!), who profits, who gets on TV, who gets to feel good about themselves... All that matters is the word IS starting to get out and I think EVERYONE who's child has been diagnosed has worked in small or large way to help educate, publicize, etc. Let's just remember all that matters is that these kids get help and get better.

 

I know there are real frustrations, but

 

United we stand...

[Worried_Dad]

Sigh... can't we all just get along?

 

First, let me preface this by saying that this forum has been an absolute lifesaver for my son and family. Without it, I seriously wonder whether my PANDAS son might not be in an institution (per the "advice of local medical experts") now. I cannot possibly express my gratitude to the many folks on here who have unselfishly helped us, despite fighting their own private war against PANDAS in their home.

 

But I do not believe that Lauren's mom or Beth Maloney are anything other than what the rest of us are: victims of a malfunctioning healthcare system that is not designed to help children with rare "cross-disciplinary" disorders like our kids.

 

I think it's awesome that Lauren's and Sammy's cases are getting publicity. It shines a desperately needed light on a condition that is incredibly traumatic for the afflicted children and their families, but which many docs still refuse to acknowledge exists.

 

Lauren's mom is a solid member of this online community, searching for ways to help her child and trying to help others, just like the rest of us.

 

And - again - Beth Maloney has been wonderful to my family and our son. From speaking to her, I believe she's exhausted by this effort and is trying like heck to draw attention to PANDAS but is not making much (if any) profit from this effort. As wonderful a book as "Saving Sammy" was for us fellow sufferers, competition for book sales is brutal, and I don't believe Beth will be retiring on the proceeds.

 

Will some people try to take credit for "unveiling" PANDAS? Undoubtedly. Don't different doctors, medical researchers, etc., try to trump each other in this way all the time? But we (the PANDAS families) need to stay united and keep supporting each other, extending help to fellow sufferers. We have much to gain from cooperation, and everything to lose from distrust.

 

Frankly, if somebody gets attention for PANDAS and stimulates research in this area, I don't begrudge them a profit at all. I just want somebody in the medical arena to help our children!!!

 

Don't get me wrong. I understand the frustration. But let's keep our weapons aimed at the real enemy (misguided or indifferent healthcare practitioners) and try to avoid "friendly fire."

 

 

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!

[dcmom]

Well said Worried Dad! I am with you 100%

[KeithandElizabeth]

Laurenjohnson'smom:

 

I understand that your daughter is seeing Dr. Trifilleti, Dr. Kovacevic and Dr. Leckman. I believe she also started antibiotics? I am wondering what your next steps will be..... do you plan to try the long term antibiotics for a while or are you thinking about IVIG or PEX?

 

Elizabeth

[T_Mom]

I say, "Let's ALL get the word out!" ... I only wish these courageous "gone-public" families had been "out there" three years earlier...

 

Folks, we are a very small subset of the Pandas "community" and privledged to be in touch via this forum -- I agree whole heartedly with Worried Dad-- in that our d would have been institutionalized by now if not for the productive advice and collective experience on this forum.

 

We all have a responsibility to share the experience and help others--don't you think?

Best to all--

[Chemar]

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!