Name: Matthew Lafleur
Please share any updates since your last interview. I’m fortunate to have published a children’s book in 2025. Back in 2018, my friend Kyle Bryant sent me something unexpected – one of his favorite books, “What To Do With An Idea.” I couldn’t wait to read it. After I did, I was so impressed at the way the story took these profound themes and made it friendly and digestible to most people – by relaying its message in the format of a children’s book. The book gave me an idea. What did I do with it? I joined a local group of children’s book writers and worked on telling a story based on my own diagnosis with FA, but packed with lessons of resiliency and hope that I wish I’d learned as a child! I am proud of my book “Prof. Hong Explores Friedreich’s Ataxia,” and I hope it brings hope to others in the FA community and beyond!
What made you want to write a book? I’ve always loved writing, so being able to encourage others through a new way of writing allowed me to share the message of finding community and hope, even when you feel all alone.
What message do you hope to convey in your writing? The goal is to make the sad and confusing period of diagnosis seem less confusing, less defeating, and more hopeful – not only for those going through the diagnosis themselves but also for their family members and for people in the community to strengthen empathy!
Do you have anything more to share? Please pick up a copy at https://a.co/d/eCxm9WS and let me know if you’d like it! Please share the story and leave a review!
Interview by
Brittany Sommerfield