Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: quilt4fun on March 23, 2012, 03:29:14 PM

Title: Awareness Ambassador...
Post by: quilt4fun on March 23, 2012, 03:29:14 PM
        I have volunteered as an Awareness Ambassador for the  Sjogren's Syndrome Foundation.
      One of the things I was asked to do was to get publicity about Sjogren's in my local newspaper.
       You can find my article a www.nj.com/south.  On the search line- type "Janis Bond".
   
Title: Re: Awareness Ambassador...
Post by: Joe S. on March 23, 2012, 03:41:36 PM
Nice article. Nice picture. :) "But you don't look Sick." :) I am sorry that the story did not get into that comment. The article is a very good start. By the way, I don't look sick either.
Title: Re: Awareness Ambassador...
Post by: Cheryl on March 23, 2012, 05:44:55 PM
Hats off to you, Quilt4fun!  Great article!
Cheryl
Title: Re: Awareness Ambassador...
Post by: quilt4fun on March 24, 2012, 12:11:07 PM
     Would you believe that the article reached a friend in Maryland through my DIL's facebook page---and she came up to NJ this weekend for church related activities.   And she could hardy wait to tell me that her doctor believes she has Sjogren's!  She goes in for further testing next week.  She has a cousin who also has Sjogren's.
   
    We talked for several minutes and share many symptoms.  I'll see her later today and have 3 pamphlets to give to her.
   
     This in one aspect of being an awareness ambassador that I never suspected!
Title: Re: Awareness Ambassador...
Post by: Joe S. on March 24, 2012, 03:13:07 PM
Hooray!
Title: Re: Awareness Ambassador...
Post by: engy on March 24, 2012, 06:22:24 PM
Thanks & good job!!!!!
Title: Re: Awareness Ambassador...
Post by: susanep on March 24, 2012, 09:41:14 PM
This is great.

susanep
Title: Re: Awareness Ambassador...
Post by: smallfry on March 24, 2012, 11:48:22 PM
Great story I have shared it on my facebook page.


Thankyou for your hard work with brinning awareness to Sjogrens I only wish that we have something like this in Australia.

Because I too would be along there with you.


Cheryl
Title: Re: Awareness Ambassador...
Post by: Patze on March 25, 2012, 12:17:59 AM
I'm with the others, nice article and cute picture too!  :D


Patze
Title: Re: Awareness Ambassador...
Post by: Cricket on March 25, 2012, 11:33:46 AM
Great article!

You are a very beautiful woman! :)   How did you get to be an ambassador?
Title: Re: Awareness Ambassador...
Post by: Katybarstool on March 25, 2012, 12:06:14 PM
Well done Quilt

You did a very good article. Thank you for raising awareness for us all.

Hugs
Kathyx
Title: Re: Awareness Ambassador...
Post by: quilt4fun on March 26, 2012, 08:56:14 AM
Cricket,
  You can get more information about the Awareness Ambassador program on the Sjogren's Syndrome Foundation website and look under "get connected"
   OR contact Kathy Ivory--kivory@sjogrens.org
  They would be thrilled to have you and everyone else helping out!

And to all of you:  thanks!  I was a little hesitant to have myself featured-tried to have the main focus on Sjogrens.  This is only one aspect of being an Awareness Ambassador.  The first think I did was to distribute Defy the Dry booklets to several doctors in my area.  There is a 2 year long program- quite interesting--check it out.
 
Jan
Title: Re: Awareness Ambassador...
Post by: A66eyroad on March 26, 2012, 09:54:06 AM
Great article! I'm so glad that Venus Williams was mentioned --- I use her alot in talking to people. (Joe, she doesn't look sick, either!  8) )

Very nice picture of you!   :D

What do you mean that there is a two-year-long program? As an ambassador? Or in the Defy the Dry booklet?

(My college roommate lives in Tom's River, NJ. I am originally from Lake Hopatcong, NJ.)

Title: Re: Awareness Ambassador...
Post by: A66eyroad on March 26, 2012, 09:54:47 AM
BTW, when I first read the subject line I thought you were an awsomeness ambassador!   :P
Title: Re: Awareness Ambassador...
Post by: quilt4fun on March 26, 2012, 03:11:28 PM
A66eyroad,
    The "Defy the Dry" is a 2 year (I think) program where each quarter of the year another area of Sjogrens is emphasized . It is run by the Sjogrens Syndrome Foundation.   Ambassadors have something to do each quarter and " report in"  Our goal is to get information out to   doctors and the public about Sjogrens and get more people diagnosed in a shorter time.