#TAKETHATJOUBERT

February 28, 2017 is World Rare Disease Day, an international event created to help spread awareness about rare diseases and the impact they have on patients' lives.

As many of you already know, with less than 1,000 patients affected with Joubert Syndrome, Joubert Syndrome is classified as a "rare disease."  As such, we are CELEBRATING rare disease day this month and the awesome friends, accomplishments, and milestones we have reached on our rare disease journey.  With Ryker in our lives, we are SO lucky to CARE ABOUT RARE!

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To help show our support for Rare Disease Day AND to spread awareness about Joubert Syndrome, we have created "Ryker Strong" bracelets, all featuring the hashtag #takethatjoubert.  The bracelets are black and white -- the colors of a zebra -- which in medicine is used to describe a very unlikely diagnostic possibility.  The words "Ryker Strong" not only help symbolize Ryker's name (which means "strength"), but they also serve as proof of the strength Ryker has to overcome many things the medical world said would be "impossible."  And the hashtag, #takethatjoubert, well, that's just our way of saying that Joubert Syndrome can't hold us back from ANYTHING!

We are spreading our free "Ryker Strong" bracelets all around, so if you would like a bracelet for yourself, please feel free to contact me here and I will send a bracelet to you!  Then, when you get your bracelet, take a picture of you wearing it -- wherever you may be -- and use the hashtag #takethatjoubert to spread awareness to others and show everyone that you too CARE ABOUT RARE!

I strongly believe many rare diseases, especially Joubert Syndrome, go undiagnosed in many families.  Parents may know their child has hypotonia, for example, but hypotonia is a symptom, not a diagnosis.  If we can spread awareness about this rare disease, it's possible we may help a family get a diagnosis to help them formulate a game plan to take on Joubert Syndrome.

We are SO excited to see these "Ryker Strong" bracelets spread all around, and we are even more excited to help spread the word about Joubert Syndrome and the multitude of other rare diseases that affect families worldwide!  Thank you for your support, and THANK YOU for caring about RARE!

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