JS Awareness Month - Rare Writers

No, that's not a typo up there.

With this being Joubert syndrome awareness month, I wanted to put some other JS-related blogs in the spotlight. Many of them have been kind enough to mention me, so it only seems right to do the same for them!

Mack's Mom by Whitney Steele

Whitney started Mack's Mom in 2011, shortly after her daughter Mackenzie was diagnosed with Ocular Motor Apraxia (OMA) and continued it when Mackenzie was diagnosed with Joubert syndrome the following year. In 2013, Whitney attended my presentation at the Joubert syndrome conference in Minneapolis, connecting with me shortly after. That fall, a video of my presentation was included in a post Whitney wrote about the conference. Mack's Mom continued until earlier this year, with Whitney hoping that someday, Mackenzie might tell her own story.

The Unexpected Journey by Anna Dietzen

I first heard about The Unexpected Journey in 2014, when Anna was looking to share the stories of people within the JS community. I sent her an email and she posted my story. Since then, I've been an avid follower of Anna's blog, which focuses on her family and the lives of her boys Parker and Lane, who both have Joubert syndrome.

The Journey Ahead by Stephen Mack

Though I've only just started following this blog, I've known Stephen and his family for quite some time now. Most posts in The Journey Ahead are about Stephen's family, especially his daughter Isabella, who has Joubert syndrome. Looking forward to following this one.

Embrace Positivity by Noldon Starks

Those who've followed my conference posts will be familiar with Noldon as a friend and fellow adult with JS. I started following Noldon's blog two years ago after we mentioned each other in posts about the Joubert conference in Chicago. Since then, I've followed his many posts, which are about a number of subjects and usually end with a very positive message.

Thanks to the author's for allowing me to share glimpses into their various stories. 

Cheers