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Rare Disease Day photo op favor to me thingy

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ericajoanne (Erica Schmidt)
Active Legion Member

Joined: 10 Aug 2012
Posts: 48
Location: Royersford, PA
Medals: None

PostPosted: Thu Jan 17, 2013 10:40 pm    Post subject: Rare Disease Day photo op favor to me thingy Reply with quote

Some of you guys know me and know that I've been diagnosed with an ultra rare disease (atypical HUS). Rare Disease Day is coming up on February 28th and I'd like to do something to recognize it. The organization that's in charge of it is doing a thing called Handprints Across America where people with a rare disease take a picture of themselves holding the logo. My mom suggested I step it up and get my "weird Star Wars friends" to dress up and be in it to. I'd really appreciate it if anyone would like to be part of this. I live in Royersford, PA (it's between Pottstown and King of Prussia). Right now I don't have an exact date or time, but I'm thinking the Saturday before the 28th looks good. I'll get some food or something. Oh and the drug company that makes the only treatment available for those of us with aHUS would like to use this photo as part of their Rare Disease Day stuff. So that's pretty cool. I've got a bunch of people from Carida already interested as well.
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PostPosted: Thu Feb 28, 2013 3:40 am    Post subject: Reply with quote

Rich Pymer shared this little note with Garrison Carida , and to share it with Echo as well thus I have the honor for posting:

"A couple of notes about the event. Consider this a "mission report" or something like that. It was a pretty cool thing. Nate, Jason, Wesley, Marty, and Tim were attending members. Had a few fans show up and interested neighbors stood outside and wondered what the heck we were doing.Ericas family was very appreciative. Erica also recieved an email from "the EURORDIS guy." The email is as follows:
"Dear Erica,First off, your picture made my colleague and I smile today, we are big Star Wars fans. Also, I would just like to thank you for sharing your story on http://www.rarediseaseday.org Putting a human face on rare disease and raising awareness worldwide is what the day is all about and this action will help inform the wider public about what it is like to live with a rare disease."

To sum it all up, it was a great pleasure to help out one of our own it a cause that is very dear to her heart and affect so many. Cheers to you, Erica ! Plus let all of us remember that tomorrow is February 28th - National Rare Disease Day.
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PostPosted: Mon Mar 11, 2013 2:31 am    Post subject: Reply with quote

A little share from Garrison Carida:

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