Rare Disease Day: Joubert Syndrome

I came to know about Joubert Syndrome through a friend. I followed her journey silently through social media. I often rejoiced and felt her frustration through the screen. I never REALIZED that for as long as I followed her story... her family was on a journey to find answers themselves. There are so many like …

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Rare Disease Day 2017

Today is Rare Disease Day! The purpose of this day is to make others in our community (including those in the medical field and policy makers)  be aware of the importance of research for EVERYONE. The more we know, the more we can detect and treat these diseases FASTER and more efficiently. It breaks my …

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The Difficult Thing No One Talks About When You Have An Incurable Disease

I've been wanting to write about this for awhile. It's a challenge to write about it without sounding off the world's smallest violin. That's not my goal. But, I do find it important enough to put it out there for those experiencing this disease or their family affected by it. I've seen others carefully share their …

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Valentine’s Day Outfit Inspiration

Happy Valentine's Day! Needing some outfit inspiration for that hot date? The color palette and textures of this outfit will make you swooooon! At least, I know I did when my husband walked out wearing this Valentine's Day outfit ❤ You know it's love when you're better half can still give you butterflies. "It wasn't love at first …

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