My wife Colleen was diagnosed with multiple system atrophy in 2013 after 5 years of misdiagnoses. A rare and terminal disease needs advocacy so I began the MSA Awareness Facebook page to daily share our journey. In 2014 MSA Coalition leaders nominated me to be the first Caregiver Representative on their board. I then began the Caregiver Representative Facebook page to share recent developments, caregiving resources and an empathetic ear for others facing this devastating disease. Since Colleen passed on 2/4/16 I've taken on the mission of defeating MSA. I currently serve on the Coalition's research grant committee and am the support line volunteer for those needing information or support.
I’m a Patient Leader