Caregivers, simply put, are the people who make my life happen. And hiring and managing caregivers is essential to being an adult with SMA living life on my terms. But, no matter how many times I have to do it, hiring new personal care attendants (PCAs) is one of my least favorite things. Let me tell . . .
The more I do with MDA, the more I learn about all that MDA is doing behind the scenes for our families. The 2016 Clinical Conference is a great example. The conference convenes world-renowned medical professionals to share best practice and discuss research advances — all for the benefit of MDA families. To attend as . . .
Editor’s note: This blog is adapted from remarks Joe delivered today at the opening session of the 2016 MDA Clinical Conference MDA has been a part of my family’s life ever since I was diagnosed with SMA Type 2 at the MDA Care Center at Children’s Hospital Colorado, and being a part of the MDA family has . . .
One of the best parts of being MDA’s National Goodwill Ambassador is getting to travel the country to places I’ve never been before. Visiting Daytona Beach, Florida, to attend Harley-Davidson’s legendary Bike Week allowed me to indulge my deep love of warm weather, palm trees and beach-side al fresco dining. As a Colorado resident, I’m . . .
My first trip to New York City may have been occasioned by my role in helping MDA launch our new brand. But to me, it was much bigger than that. For me, the trip was about making dreams come true and celebrating the beauty of life. It was about overcoming challenges and living life to . . .
Like most recent college graduates preparing to enter the “real world,” I was in the throes of the inevitable what-the-heck-am-I-going-to-do-with-my-life panic when an unexpected call set me on a new path. In accepting the offer to become the first adult MDA National Goodwill Ambassador, I could stop speculating about what my next life journey will . . .