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Community Blog Initiative: The First Post

Updated: Feb 18, 2021

When this decade began, Cure CMD was a fledgling organization, less than two years old. For 14-year-old me, the highlight of those early conferences in Philadelphia was finding places to play hockey while my parents and doctors sat in boring conference rooms. I had little interest in the multisyllabic words or convoluted medical terminology that was being passed around. I just wanted to be with my friends, even if there was only six or seven of us.

Since then, our community has grown exponentially and continues to welcome folks from all over the world, with hugely varied life experiences. Meeting so many people, especially newly diagnosed kids and their families, has usurped hockey playing as my favorite part of each CMD community gathering. Don’t get me wrong, I still love playing hockey as you’ll soon learn a lot more about, but it’s been so gratifying to share my life with CMD, in all of its struggles and triumphs, with newcomers to our community.

To that end, I should probably introduce myself. My name is Luke Hoban. I’m a 24-year-old native of the Philadelphia suburbs, where I am a defenseman and alternate captain on the Philadelphia Flyers Powerplay wheelchair hockey team. I graduated from the University of Pennsylvania a few years ago, and am currently working towards a Master’s degree in Urban Bioethics at Temple University. I have Collagen VI CMD, and use a wheelchair and non-invasive ventilator—both of which I will rave about endlessly. Growing up alongside the CMD community, I’ve learned how to adapt and thrive in the face of challenges posed by my body and by an ableist society.

These experiences are why I said yes when our fearless leader, Rachel Alvarez, asked me to helm Cure CMD’s Community Blog Initiative. We want this to be a space where affected individuals and their families can tell our stories, both good and bad.

Every one of us has a unique perspective and fascinating story to tell (probably more than one, actually), and now you have this place to spill it. The last decade has been filled with more and more of us sharing our stories with each other, both online and at conferences. As the next decade begins, I hope that you’ll take advantage of this blog to share some of your stories with this incredible community.

Cure CMD is offering $50 per blog post, for up to 50 blog or vlog posts throughout 2020. Learn more about the Community Blog Initiative and how to become a contributor, or support the program with a donation.

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