Care About Rare!

February 28th is World Rare Disease Day, and I would like to invite ALL of you to celebrate this special day with us!

World Rare Disease Day is a day our family wasn't aware of until Ryker was diagnosed with Joubert Syndrome in December 2015.  A rare disease is classified as one that affects fewer than 200,000 people in the United States.  Joubert Syndrome affects fewer than 1,000 people worldwide.  Ryker is among the rarest of rare!

To help celebrate World Rare Disease Day, and to show support to Ryker, and all of the patients and families affected by a rare disease, we invite you to WEAR JEANS for RARE GENES on February 28th!  Share your support for Ryker on social media with a picture of you and your friends in your jeans with the hashtag #RYKERSTRONG !

If you would like to further show support for Ryker, please consider a donation to the Joubert Syndrome Foundation, a parent-led organization who has helped our family and many like us tremendously on our journey with JS.  Donations can be made here and you can make a donation in Ryker's name.

We look forward to celebrating with you!