Monday, February 27, 2012

Show Your Support For Rare Disease Day

Rare Disease Day is this Wednesday, February 29th.  I want to invite all of you to wear jeans/denim/blue on Wednesday in honor of Abby and all of the others living with a rare disease.

It can be extremely isolating when you are a family dealing with a rare disease.  As much as people want to understand, they just can't.  Starting Rare Love has allowed me to connect with others who share similar feelings, but battle different diseases.  Likewise, participating in events like Rare Disease Day helps to raise awareness and feel just a little less isolated.

Watch this short video about Rare Disease Day and please consider joining me on Wednesday!  :)




PS:  It's considered a "rare" disease if it affects less than 1 in 2000 people.  That really puts into perspective just how rare CCMS is...I don't think they can even say "1 in ____."  1 in 1 billion?  All I know is that it is extra rare, and we are extra thankful for her life!

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