Joubert syndrome conference

As some of you may know, after almost 9 years of searching and testing we finally got a diagnosis for Tyler. He had whole exome sequencing done and we received results at the end of march. His affected gene is cspp1 which is linked to Joubert syndrome. While this is an extremely rare disorder, it's nice to have a name and an idea of what's going on! There is a national Joubert syndrome conference every two years. It just happens to be this coming July and is in Phoenix, Arizona. Being able to attend this conference would dramatically help us in not only our care for Tyler and his future, but also would allow us to network with other families as well as healthcare professionals that will be at the conference. It was suggested to us to do a gofundme account as well as tshirt sales in order to raise the funds needed to allow us to attend the conference. If you would like to support us in this venture we would greatly appreciate it! We have already begun praying for the relationships that will be formed at this conference as well as the knowledge we will gain from it.
The cost we know as of now is $550 for our registration, $100/night for hotel, and approx $1500 for plane tickets.
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Amber 'Bryant' Murken
San Marcos, TX

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