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Robinj

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 #1 

American lupus patients will get an unusual chance in person or online to tell therapy developers and regulators what future treatments ought to do for them.

Three national organizations are sponsoring the Washington-area gathering on Sept. 25, which those unable to make the trip can participate in by watching a live webcast. The three are the Lupus Patient-Focused Drug Development meeting are the Lupus and Allied Diseases Association, the Lupus Foundation of America and the Lupus Research Alliance.

https://lupusnewstoday.com/2017/06/06/lupus-patient-to-be-able-to-sit-down-with-therapy-developers-and-regulators/


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Cakelady

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That's really interesting
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Mr. Bun

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I have been asked to deliver this speech, by the provincial leader of our NDP party, on camera, this coming Monday morning.  I previously presented this at the London & District Academy of Medicine's patient forum in April of this year.

It would be similar to your Governor asking you to speak at a media conference.

Doctors & politicians are starting a grassroots project.  They are including patients that have been affected by long Ontario wait times for healthcare & letting us share our personal stories of how extensive government cuts in funding have dramatically increased chaos in our lives. Politicians, the public & medical personnel need to be enlightened as to the devastating physical, social, financial & psychological impact these cuts have affected the sick.  I am honoured to have been asked to participate. 

I am also sh!tting my pants.





Robinj

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Looking sweet there Bun....
smiley: Hugz - keystrokes: :hug2

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Cakelady

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Very sweet in deed Anthony would be proud
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Mr. Bun

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 #6 
well now i'm cryin'.......

good tears.....missing a friend tears....glad for the friends here tears......

tx guys xoxoxmoo
Robinj

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Bun, you are the cutiest patootiest
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Mr. Bun

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News conference regarding Ontario Government health cuts & how they are affecting the sick.

My sister & I are the ones wearing shades on the right.  We were channeling Jackie O.



NDP Leader Andrea Horwath focused on health care wait times at a stop in London on Monday, June 12, 2017.
Cakelady

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You guys look cute
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Mr. Bun

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 #10 
ty CupCake!!

we were under the blinding hot sun......i was 30 seconds away from passing out lol.  they shut off the cameras & my sister grabbed me, hauled me under a tree & found a chair for me.

I kept repeating "Lupus doesn't like the sun.....lupus doesn't like the sun......"  

Most of the people standing up with us had broken hips, mobility issues etc.  This was a health care event for SICK, INJURED people that the media arranged......outside...under the sun....with a few chairs, that the reporters were using!!!!  My sister helped two other ladies out by requesting chairs for them...they were obviously in pain.

bonehead media.
Cakelady

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I was disappointed with the lupus walk in SF because there was no way for me to get my power chair on the path for the walk.
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Robinj

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I think the genius idea of a "walk" for people with lupus is pretty ridiculous. Most have sun issues for crying out loud. Hello???? McFly????

smiley: Knock - keystrokes: :knock2

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upstater

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Nice to see you :) You look great....poised. No one can tell you were dropping pellets ;-)

Yes...out in the sun...not too smart on the media's part. What about popping up a media tent?
Mr. Bun

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 #14 
I know Robin....it blows my mind....that the persons organizing these events (for sick & injured people) seem to have NO COMMON SENSE when it applies to accomodation of said participants.

Upstater?  my pants were filled. lol....but I did receive a good overall reaction.  pellets not noticed....lol.  yep.....bun was dropping them.
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