Swedo, Leckman, Cunnningham, Hornig

[norcalmom]

They will be at PAS in April- it appears to be a HUGE medical conference with all kinds of topics - link at the bottom of this post. I'm assume med professionals only. I really hope Swedo updates her slide presentation it just really #$cks . She needs to consult a PR person to help her revamp her message. I love her with all my heart, but that old preso has got to go before she gets up in front of thousands of people! I don't want it to be all slick and market-y that isn't what I'm talking about.

 

She spends several slides talking about a study and a person that should be dismissed if the name even comes up in Q and A...she has a picture of a panda in a rectangle on the first slide. Its horrible. I'm pretty sure she has been changing the words on the original presentation she did ten? years ago. I'm thinking of contacting her to redo her presentation for her - its that bad!

 

I'm sure she could tap a student that is good with technology - or better - get a marketing grad student and a med student to do it together with her - forcing her to completely break down the old stuff and rethink he past study and everything that has come to bear since as a whole, so that the message is clear and powerful. What was clear to me in Texas is the extent of the chip on her shoulder that exists because of the old "controversy" - STOP telling people its controversial!! That word has no place in her presentation, or verbal delivery. Doctors (and people in general) are scared of this word - you say that about your own research - and they stop listening right there. Why would another doctor diagnose it if the primary researcher calls it controversial? Let the people viewing your information decide who and what the believe. So there was one study - that used an invalid sample group and is therefore invalid- dismissed. You are not there to present that information - you are there to present YOUR information. At MOST there should be one bullet on that particular study's short comings - but ideally, I'd just leave it for Q and A - if the audience is concerned about that one study (and not the 10 studies that support your own research) someone will be sure to ask - and you can answer.

 

Most people -most doctors - don't know anything about it- or they heard the word, and they associate it with a sore throat. And the next thing they learn about it is "its controversial". Then they stop looking into it because they don't want to associate with anything controversial!!! So, they claim ignorance and inablilty to treat it rather than learning about it and risk getting sued using a "experimental" treatment (antibiotics and IVIG) to treat a "controversial" disorder.

 

And while I'm at it - PANS is an even WORSE acronym that pandas - a new parent searching the internet for "pans". "pans and washing", "pans and movements", "pans and obsessions"...how fun will that be.

 

It should be unique so that you can google it, and buy a URL for it (one that you don't have to spend thousands of dollars for because Williams Sonoma owns it). These people are brilliant, but sometimes....they just don't think.

 

But I digress..Swedo is my hero, she really is..here is the link to the Boston gig:

 

http://www.pas-meeting.org/2012Boston/Tracks/details_sessions.asp?det_sesstype=Topic%20Symposium%20&det_sessnumber=4320%20&det_sesstitle=Progressing%20from%20PITANDS%20and%20PANDAS%20to%20PANS%20(Pediatric%20Acute-Onset%20Neuropsychiatric%20Syndrome)%20&det_sessday=Tuesday%20&det_sessdate=5/1/2012%20&det_sessstart=10:30:00%20AM%20&det_sessend=12:30:00%20PM%20&det_sessroom=

[peglem]

Thanks for the link. I've never really thought about it before, but I think you're right. Somewhere in her journey Swedo was put on the defensive...kinda like parents of PANDAS kids when we can't find help. I wonder how open she would be to help.

[thenmama]

xx

Edited March 28, 2013 by thenmama

[norcalmom]

thenama - you just finished writing the appeal and just finished reading the Steve Jobs biography! (so I'm inspired to "change the world" as well as tell other's their work is $*#& ) You have to read the book, or know his reputation to understand exactly what that means!

 

I'll email her an offer. I'm no marketing "expert" but I think I know a decent presentation when I see one, and understand enough about what she wants to say to put together content, and if she would take some help - I'd use all the tech multimedia assistance I could get.

 

I did just see that the title is not her standard title for the Boston gig - it is"How PANDAS and PITANDS Evolved to PANS (It Took More Than Shortening the Acronym!)"..but I bet it the same as the on in TX - THE FIRST SLIDE READS "PANDAS, PITANDS & PANs: Continued Controversy? Or Case Closed?"

 

It is listed on the on-line agenda as PANDAS, PITANDS and PANS: Acute-Onset Subtypes of Childhood-Onset Neuropsychiatric Disorders

 

Here is a link to the presentation she just did in Texas:

http://healthcare-professionals.sw.org/resources/docs/division-of-education/cme/brain-post-infection-symposium/0900_PANDASPITANDS_Swedo.pdf