JS Awareness Month - Friends

I post a lot about adults with Joubert syndrome. There are many reasons for that, the most obvious one being I am one. And as an adult with Joubert syndrome, I feel it's important to make it known that there are many other adults like myself out there with this rare disorder.

I've connected with quite a few of those adults over the years, but I wanted to save this final post of Joubert syndrome Awareness Month to show off some of those folks who I feel have become friends and were awesome enough to let me include them in a post.

*Photos and inclusion used with people's permission*

Johan, from Sweden. Johan was one of the first adults I connected with shortly after I was diagnosed. A pretty big movie fan, he's currently going for his Masters in Internet Security.

Crystal, from Washington State. Crystal and I met shortly after she was diagnosed with JS, when her mother reached out to people on social media. My father told her about me, then she and I connected. Within minutes of that, Crystal and I were chatting and quickly became friends!

I've used the photo at the beginning of this post several times before, but they're pretty great people so it's being used again. Left to right, we have Alex, from Florida. Met him at the conference in Chicago after my presentation. We connected on social media soon after and like a lot of the same movies and TV shows. On the other side of me is Noldon from Ohio, who I've mentioned a few times on here already. Then there's Erika from Saskatchewan. Erika's one of the few Canadians I've met with Joubert syndrome, is always a good source of encouragement and a quick chat, and has recently started an internship.

Kaci, from Arizona. Kaci and I connected through the Youth and Adults with JS group I created on Facebook and quickly became friends, often chatting about books or whatever. We met in person at the Phoenix conference, where we led a discussion group for the teens and younger adults in attendance.

When I was diagnosed, I knew Joubert syndrome was rare enough that the chances of meeting someone like myself would be few and far between, and I was okay with that. That's why getting to know these awesome people, and others like them, is always so great!

Many thanks to each of them again for allowing me to include them in this post.

Cheers!