NPR might do a story on PANDAS/PANS

[mdmom]

Just got this through my personal email. This reporter will be pitching his story idea tomorrow to the staff. Please send emails to him if you have a story you would be willing to share. No names will be used. Specifically, there is interest in stories where children and families were treated poorly by medical institutions with regards to PANDAS/PANS. At the very least, please email the reporter to tell him how important it is to spread the word about PANDAS/PANS.

 

The reporter is Pat Walters pwalters@wnyc.org

His phone is (646) 829-4585

Edited December 7, 2012 by mdmom

[EAMom]

Just got this through my personal email. This reporter will be pitching his story idea tomorrow to the staff. Please send emails to him if you have a story you would be willing to share. No names will be used. Specifically, there is interest in stories where children and families were treated poorly by medical institutions with regards to PANDAS/PANS. At the very least, please email the reporter to tell him how important it is to spread the word about PANDAS/PANS.

 

The reporter is Pat Walters pwalters@wnyc.org

His phone is (646) 829-4585

 

this is what Beth posted on FB:

 

NPR - EXCELLENT NEWS & NEED YOUR HELP

 

I spent an hour on the phone today with an NPR reporter who is researching the possibility of a national documentary about PANDAS/PANS. This story will reach MILLIONS of listeners.

 

 

He is fascinated by the topic and has already spoken with Dr. Susan Swedo to better understand the disorder. What he is interested in from you are your personal stories of how poorly so many PANDAS/PANS parents have been treated by doctors, and in particular how hospitals collaborate with state departments of children’s services to strip parents of their rights.

 

Will you please contact him directly? So many of you have asked me to share your stories and I gave him the broad strokes. But I want him to hear directly from you. He does NOT need to use your name or your child’s name in the documentary.

 

I’m asking you for two things:

 

#1 If you have a story, please reach out to him; and

 

#2 Whether you do or not, could you please dash off a note to let him know how important this story is?

 

The only thing that will continue to turn this around is the press.

 

He has a meeting scheduled to discuss news ideas tomorrow morning. If he could possibly walk in tomorrow to a few hundred emails, I think that would be excellent.

 

Please circulate this widely.

 

The reporter is Pat Walters pwalters@wnyc.org

His phone is (646) 829-4585

[JPdad]

I sent him my story about our dealings with the "PANDAS Clinic" at C.H.O.P. The worst medical experience I've ever encountered.

[LindaMW]

I also emailed him our story. I really hope this can get the ball rolling and help get this out into the media.

 

JPDad I also shared our pathetic experiences at CH of P.