November 17, 2019 / Donnie Downs Moebius Syndrome Holiday Hero

I met Donnie for the first time soon after coming onto Facebook. In the fall of 2010 when I started the Many Faces of Moebius Syndrome I knew I wanted Donnie as one of our founding board members. One of our first tasks as a young and inexperienced board was to decide what we wanted to do to help the community. We knew we didn’t want to be like any other organization out there. We wanted to do something new and different. We kicked around different ideas then Donnie came up with the idea of having a Moebius Syndrome Awareness Day. We overwhelmingly approved the idea. A couple of days later Donnie started a cause page and within a couple of months 6000 people said they wanted a Moebius Syndrome Awareness Day.

Donnie has a son with Moebius Syndrome named Caleb. He is also a published author. His contribution of coming up with MSAD has changed the face of Moebius Syndrome forever. The Many Faces of Moebius Syndrome would not be where they are today without Donnie’s efforts. He left for a while, but now he’s back. Welcome home Donnie. Hope you had a great Birthday on Saturday and a great Hero Day on Sunday.