Saturday, February 16, 2019

Brighten Up Rare Disease Day

This year, on the last day of February, Kyle and I will celebrate being married for ten years. And while Feb. 28 will always be a special day to us, when Grace was diagnosed with iNAD, it became special for another reason.

The National Organization of Rare Diseases marks Feb. 28 as Rare Disease Day. The main objective is to raise more awareness for all types of rare diseases all over the world. Why is this so important? Because according to the Rare Disease Day website, one in every 20 people will live with a rare disease at some point in his or her life. And many times there is no cure for these rare diseases that often times go undiagnosed.

This is our fifth Rare Disease Day since Grace has been diagnosed with INAD. And we've done a variety of different things over the years, sharing photos and videos to social media and working to get our awesome communities involved in our efforts.

Last year, we launched a Beat INAD coloring page that Kyle and I designed. We offered the coloring sheet to schools, and we were overwhelmed to see all the coloring pages all across the county. Kids and grown-ups alike shared their artwork helping us to raise more awareness for INAD.

And last year's coloring page was neat, but this year, we were blessed to have graphic designer Danielle Seago of Doodlebug doodle an awesome coloring sheet for us with the Princess Grace logo. Seriously, it's awesome, and you won't want to miss a chance to color yours.  Special thanks to Danielle for donating her time to our project, and you can support her work by purchasing some of her children's books on Amazon (Marvelous and Kind Kloey and Faith Over Fear).  

We hope that everyone loves the new coloring sheet as much as we do. We will include a copy on our Facebook page that can be downloaded and would be more than happy to email a copy to anyone interested. Feel free to share the coloring sheets with anyone you think who would like to help us raise awareness, and make sure you share the finished product with us on Facebook, Twitter or Instagram.

And don't forget that Rare Disease Day is Feb. 28. Every single person can make a difference in the life of someone with a rare disease.


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