This year

Well it’s Thanksgiving again, so if you’re reading this ON Thanksgiving, you are just like the rest of us: You ate, or are waiting to eat, your house is full of people who you love but also want to know when they’re leaving, AND you are THAT guy and are scrolling through your phone thinking: Gee, Pat posted a blog today? He’s just as pathetic with being an online addict as the rest of the USA. Wrong haha. I’m writing this in advance, but I wish all of you a wonderful holiday filled with warmth, laughter, family, friends, and no political discussions at the table. For your bathroom pleasure (if that’s where you’re hiding from your family) or those of you taking dance lessons in your living room, I would like a few moments to tell you about a group that I am thankful to be a part of: The PAAC.

Many of you have asked me what I am actually doing while I’m on leave from school. Teaching is all that I have ever done, and so working in the non-profit space has been an interesting shift. I am involved in several projects, however the PAAC is emerging as a place where I can help and be helped the most.

Although I did not start this group, I was asked to manage it a few years ago. PAAC stands for Patient Adult Advisory Committee and is made up of men and women that live with Duchenne or Becker Muscular Dystrophy, or are carrying the genetic code to cause variation in the dystrophin gene. As I write this, each of these 27 people range from age 18-62 and live in all parts of the U.S. We come from different regions, economic backgrounds, cultures, and education levels. The common factor simply comes down to all of us navigating our types of MD the best we can. We meet monthly to work on projects that we find important such as lobbying Congress for more progressive laws. If you receive federal disability benefits, you are only allowed to make a small amount of money each month and are penalized for having too much money in the bank. In short, many of us get punished because we want to work. Broken system. Another example of our work is simply raising awareness that everyone with MD has the same aims as everyone: Respect, love and acceptance. We are active on social media trying to knock down the “hero status” that follows too many disabled people around. We want society to level the field for all Americans while finding a good reason to get out of bed each day. Just like all of us. Some members of this group have started their own businesses, while some are continuing their studies. Although the vast majority of us use power wheelchairs, we share a passionate love of major league sports and talk trash about any team that is in someone else’s region. We pick on each other with love. We share stories about everything from Netflix binges to traveling to our hopes and dreams. Many of us appear at industry conferences and seminars so the scientists working on clinical trials and setting up future treatments will see us, hear us, and are reminded that while they use test tubes and microscopes, and experiment on mice, there are real people out here who count on their work. We bring hope to our friends and families that while MD is serious, it will not defeat us. I am not inspired by the PAAC because we have physical challenges to deal with. I inspired by the PAAC because we have come together to form the best family that none of us want to be in. I look forward to each interaction with my buddies in this group, and this Thanksgiving I am proud to be in your lives as we work to elevate societies views of anyone that carries a heavy cross to bear. DJ, Jacob, Ravi, Patrik, Adam, Mike V, Alan, Sean, Mallory, Mike G., Austin, Colin R., Colin W., Jake, Chris, Jordan, Steve, Kyle, James, Adith, Thomas, Dhruv, Dain, Cal, Ryan and Jenn…..You elevate me. Happy Thanksgiving and keep the faith.