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️️Kabuki syndrome conference at johns hopkins-2-2

Help raise awareness while raising funds for a crucial kabuki syndrome conference in spring 2018.

  All funds raised will go towards Costs for the conference to be held at johns hopkins
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kabuki syndrome is a rare genetic disease that causes life threatening/ altering complications. It affects 1 in 32,000 people.  Research on kabuki syndrome is taking place at Johns Hopkins and it is vital to our children's' well being that we are educated as much as possible, which is why there are conferences and get togethers held every year across the country and the world.  As a parent of a daughter with kabuki syndrome I also know that I take away so much information that will help my daughter from the other families as well as a feeling of acceptance and love that is unparalleled!  In order to obtain the information from research that we so desperately need, we as a kabuki family need to raise funds to help pay for the scheduled conference.  Most ️kabuki families struggle to get by due to the never ending medical/therapy bills.  Please help us by buying a shirt or bag so that as many families as possible will be able to attend the conference.  You will also be spreading awareness and showing your love for the special kabuki kiddo in your life!!!  Thank you in advance for your help!  Every little bit counts and all proceeds will go directly to the costs of the facilities at Johns Hopkins.  Any remaining funds will go straight to research!  Order your shirt in time for kabuki syndrome awareness day at the end of October!

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