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Rare Disease Day 2011

Forum: 2005 Playroom


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February 27th, 2011, 08:51 PM
docsmomma's Avatar Platinum Supermommy
Join Date: Apr 2005
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Tomorrow is Rare Disease Day 2011. I am so eager for tomorrow to arrive. For so many reasons.

David decided my moms van needed to be decorated ("Daddy would be soooo mad if we decorated our van, so lets do grammas") so we spent today painting up my moms van for this special day.

Liams Lighthouse Foundation is hosting an awareness campaign in NYC tomorrow morning, at the windows to the Today Show. Joey's picture will behere, a poster size picture, for all to see. (hint, hint, watch/dvr/record the Today Show on channel 4 at 7 AM!)

We are participating in a Rare Disease Day Balloon Release and my mom has the stuff needed for 150 balloons... each one with the name and disease info of a child or adult suffering from some form of rare disease (albiet, mostly histio).

And finally... We will all be wearing our Jean awareness ribbons... for Hope... its in our GENES!

I am SOOO ready to feel like I am fighting something, while bringing awareness to the over 7,000 rare disease and the over 25 million americans (not to mention those worldwide) who have some form of rare disease.

Had to share. LOL
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February 28th, 2011, 09:43 AM
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I saw it on the Today show this morning! (I watch that show EVERY morning). They were a powerhouse w/ the pix and signs. Good for them!!!
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February 28th, 2011, 12:48 PM
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Join Date: May 2005
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I'm just now seeing this I watch the Today show every morning too but didn't see
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February 28th, 2011, 02:42 PM
docsmomma's Avatar Platinum Supermommy
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I burst into tears seeing all my histio family and friends there with all those pictures. 70 pictures, over 100 volunteers and Michelle (the founder of Liam's Lighhouse) spoke and my heart broke. Her son was undiagnosed for 10 months, and when they finally diagnosed him it was too late. What she has done to turn it around and help other families just amazes me!
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