Sunday, May 19, 2013

Look What I Got!

In August, an article that I wrote about Abby for The Global Genes Project was published.  Until I introduced Global Genes to Cerebrocostomandibular Syndrome, it wasn't even listed in the rare disease data base.  The editor emailed me recently asking me to write an update about Abby, so I happily obliged!  I love sharing the miracles!  

Look at all the fun stuff I got in the mail the other day as a thank you gift!


Hats, bracelets, car magnets, stickers, pins, key chains, and even a bear for Abby!  Everything spreads the message that We Care About Rare!   I'll be sporting my new key chain and bracelet, and I am thrilled with the new car magnet to replace to sticker I had to say goodbye to after my accident.  We're going to put away some of the other stuff to hand out for Rare Disease Day on February 28th.  We have plenty of stickers, so I'm thinking about maybe passing them out to Abby's class or something.  I may even do a little blog giveaway!  :) 

The editor also included a very sweet note to say how happy she was to hear about Abby's progress and what an encouragement she is to them.  That made me smile!  I'll post the link to my update when it is live.  

1 comment:

Raelyn said...

Julie....
You have been dealt what Tony Stark/Iron Man would refer to as "a terrible privilege", with Abby's condition being so rare. And, you're continuously raising awareness for it!! ;-D
--Raelyn