The Rare Writer

Hi, and welcome to The Rare Writer.

I'm starting this blog as a way to share my life story and try to help out people going through similar circumstances.

See, I'm 28 years old and physically disabled. About 2.5 years ago, I was diagnosed with Joubert syndrome, a rare genetic disorder (hence the blog name). This past July, I was asked to speak at a conference in Minneapolis, Minnesota about my life with the syndrome (I'll post more about this later on).

Now, I've been speaking about being disabled for quite some time now, but the reactions and encouragement from everyone at this conference, from parents to doctors, and even some of the older kids, has made me want to pursue the speaking, writing, and general advocacy at a more professional level.

 I'm very grateful to finally be doing this, and hope people enjoy what I have to say.


Until my next post, cheers!