28 February 2014

Rare Disease Day

Happy Rare Disease Day!

We (meaning everyone involved and spreading the word about Rare Disease Day) are trending on Facebook, which is outrageously wonderful. Why is today so important you ask? Because rare diseases are unknown, they are so often misdiagnosed or go undiagnosed for years. Care is also a critical concern for many people living with rare diseases. I basically have to educate the doctors I see here in Utah all about Cystinosis. It can be a rocky road when you are the one with more knowledge about your condition than the actual medical personnel. It has ultimately taught me so much about life though, how to advocate for myself, and faith in my own information!

Remember when I posted about the pill art filling up my Facebook newsfeed? Well, it has exploded in our little community. A sweet, incredible momma I am blessed to know made this video showcasing a bunch of different creations in honor of Rare Disease Day. Take a look and I double dare you to watch it and keep the tears from falling! You will see a few of my contributions in there as well. Although, Sookie made "boogers" the other day and I'm still attempting to figure out how to make boogers inspirational. Hahaha. (That girl, oh my heavens. Her spirit cannot be contained.)

If you follow me on instagram you know today started the Rare Disease Day Auction for the Cystinosis Research Network.  Here are a few of the auction items that are available to bid on!

Bidding ends Sunday evening at various times. Click on over to my instagram account to place your bids! All proceeds go toward research for better treatment and ultimately, a cure for Cystinosis.

Extra special thanks to all of our friends at:
Olive Lane Shop
Anzana's Treasures
hello apparel
Thimble and Thistle
The Printed Palette
Broken Ghost Clothing
Stella & Dot By Catherine Knight
The Shine Project
Author Amanda Leigh
Artistic Expressions By Mel

...for making fabulous goodies and having generous hearts. Their support means the world to me!