About Lynn Johnson and the Media

[Sheila]

Hi Forum Friends,

 

I'd like you to know that as director of ACN, I am very pleased to see Lynn and Lauren in the news. (For some reason the program this morning did not air on the Today show in Tulsa. They kept announcing it would come but it didn't! I was glad to watch it on the link provided by a member.) I thought the segment was great.

 

It would be enough if Lynn just told her story and got the PANDAS concept out there to raise awareness. But, she is also bringing supportive and bright physicians to the forefront. This is quite an accomplishment, and seems to be her calling. I'd like to suggest that she has the right to say what she feels comfortable with in the short amount of time given to her, without all of us trying to tell her what to say. I'm sure she is aware of your concerns.

 

It is extremely rare to get good media coverage for a condition and treatment that is not embraced by the mainstream. And then to have multiple media outlets in one day, and a story people truly want to follow up on--it's quite wonderful.

 

I know people are anxious to see certain others or work highlighted. There is time for that, and it will happen. I know it is hard to be patient, but Lynn's exposure does not cancel out the opportunity for others. Lynn (not to mention Lauren!) has the potential to be an excellent spokesperson for PANDAS. She has promised to carry the cause for "all" our kids. Let's give her the benefit of the doubt.

 

Please know that as a moderator of the forum I will delete or edit posts that seem harsh or derogatory, as they run contrary to our mission. I hope you all understand. Let's all be on our toes with the new PANDAS exposure and see what we can do to further the cause. Sheila

[Fixit]

That is what i was trying to say but you type gooder than i do!!

[T_Mom]

Thank you Sheila for starting this thread--

 

Hats off to you Lynn--fantastic job today...

You put us in the spot light, and I thank you, thank you.

 

Please tell Lauren that Pandas parents and children thank her for going on tv on our behalf--one gutsy move for a little girl.

 

I heard the "story" of Pandas being told in the clip -- OCD, ticcing, mentioned...Thanks to Dr T!!! He clearly covered the various aspects of Pandas--

What a great thing to have Dr. B on there with Lynn this time--showing two doctors validating Pandas (was that a 3rd in the video clips?

Hooray for the TODAY Show for putting a face on the illness.

 

Keep up the good work.

T.

[Worried_Dad]

Ditto. It's all good!

 

Lynn and Lauren have given a very real, personal, and sympathetic face to this terrible disorder. It's harder for people (and doctors, too, I think) to ignore PANDAS when they see it right in front of them on national TV! I especially liked the side-by-side view of Lauren's earlier Today Show visit, where the "sneezing" tic was relentless... and Lauren sitting calmly on the same set this morning with no tic. Very dramatic, very brave, and very hard for naysayers to dismiss!

 

Also sounds like Lynn's new website combines info and fundraising for research, so that sets it apart. (Maybe a hybrid between PANDAS Network and PANDAS Foundation?) It's great to know that Dr. T is on board, and sounds like Lynn did solicit some input / material behind the scenes from Diana P.

 

So more power to Lynn for having the time, energy, and drive to push forward with all of this. Looks like there is already informal collaboration happening. I hope the key sites / contributors continue to compare notes and foster a synergy that benefits all PANDAS children!