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Never Stop Driving: Cure CMD's Dedication to Community Member Simon Cantos

Updated: 13 hours ago

Simon Cantos, sitting in his wheelchair, parked in front of his newly adapted van, smiling with his van’s ramp deployed.
Simon Cantos with his accessible van

It is with heavy hearts that we remember the life and legacy of beloved CMD Community Member, Simon Cantos (1982-2024), a champion of the CMD Community and adaptive driving. He was known to many as a friend, mentor, and role model. Whether he answered your questions about living with CMD over social media or you connected with him at a Scientific and Family (SciFam) Conference, it was evident to all that Simon cared for others deeply in so many ways. Many could attest that brief encounters easily turned into hours because of his passion and unwavering commitment to supporting those traveling along a similar rare journey.


Simon’s dedication paved the way for progress that has positively impacted the lives of countless individuals all around the world, since the early days of Cure CMD’s inception and beyond. He was a pioneer, as one of the originally confirmed Collagen 6-CMD cases in the Philadelphia area, receiving care at the Children’s Hospital Of Philadelphia (CHOP) where early CMD Conferences were held in the rec center at CHOP, featuring mostly local CMD affected individuals and their parents. Simon became fast friends with Philadelphia locals, Luke Hoban and Liam Miller, instilling big brother values (pictured).

Two young men in wheelchairs posing for a photo in a gymnasium
CMD Community Members, Liam Miller and Simon Cantos together at CHOP during an original CMD Conference

Simon was among the first in the CMD community to navigate college, becoming an accomplished mechanical engineer and advocate for living independently, encouraging those who followed to live without bounds. Liam reflects, “I’ve only known a world with Simon, so it’s hard to think of one without him…I loved him.”

When not touching the lives of others in person, he left a lasting impact on many through the community’s virtual social connections. Friend and fellow CMD Community Member, William Griffin, was moved by Simon’s zest for life. “We grieve because the loss of something is ever present and the need to understand it is constant. A sometimes unbearable ache that time dulls, but symptoms remain. But, this pain I will gladly endure. I've thought about Simon a lot over the past week and this indelible presence he leaves behind. I only got to know Simon these past 4 years, which seems way too short. But, I count myself lucky enough to have

Simon Cantos wearing black conference-branded tshirt in a room with other individuals
Simon Cantos at 2017 SciFam

called him a friend. I know myself better because of him. A great listener and guide through this sometimes unknowable disease. He taught us to live past our limitations, which he did daily, better than me. He was compassionate towards all the Cure CMD Family, both known and unknown. He was constantly pursuing his goals and freedom through driving. Confidently braving each day. So, if you're reading this, I ask you. What are you putting off because of obstacles or simply saying "I can't"? I encourage you to take Simon's example. Accomplish one or many hard things. We continue Simon's example. We replace that unbearable ache with Simon's legacy!”

Kelly Berger, who lives with CMD, was a close friend of Simon’s, sharing his passion for adaptive driving. “I quickly bonded with Simon over our love for adaptive driving. I had never

A virtual Zoom Meeting screenshot of 9 affected individual members of the 20s/30s CMD Happy Hour.
Cure CMD YA Virtual Happy Hour

met anyone so passionate about the thing he loved the most, driving. He inspired me to keep pushing myself not only in my driving journey but also in my everyday life. His spirit will forever live on in all the lives he touched and shaped in our CMD community. He truly was the pioneer, the person we all turned to, and has left such a pivotal impact on us all. I will forever carry on his mission of getting more adaptive drivers on the road and hold a special place in my heart every time I start up my van independently and embark on my next adventure. That freeing feeling of being behind the wheel on your own was what he treasured the most and why he championed so passionately for everyone to experience. I’ll never stop driving in his honor.” Not only did those diagnosed with CMD feel empowered by Simon, but parents and family members of affected individuals have been moved by his spirit, and share their memories and condolences.

“We will truly miss you on this plane of existence. Your energy, passion and love is truly amazing. In heaven, there are no disabilities and you are able to do everything you would like. Thank you for making this planet better through your advocacy for living with Muscular Dystrophy, your positive influence and your incredible positive attitude. You made a huge positive difference in the world and was truly inspirational to me and our family. You helped

Simon Cantos & Board Member, Mark Beare, with his daughter who lives with CMD, on a boat on the Chicago River at the 2017 SciFam Conference
Simon Cantos with the Beare Family

us tremendously at Cure CMD in the early days and beyond, thank you!” — CMD Parent

“You were the first person I met with CMD after our son was diagnosed. We met in Pennsylvania at a CMD family conference. You showed a parent like myself that my son had a future and a place to contribute in society. Your role in our community was far larger than you probably knew.” — CMD Parent


Simon Cantos at the 2017 SciFam Conference, posing with his speaker name badge in front of a Cure CMD poster.
Simon Cantos at 2017 SciFam

“You were the first person I met at my family’s first CMD conference in Philly. I will never forget your strength of character. You were kind and welcoming, full of enthusiasm and despite being in a wheelchair, I immediately knew that you sensed no bounds.” — CMD Parent

That Defining Moment” and “I Am No Sob Story,” both written by Simon, are published on Cure CMD’s Blog. He also participated in many Cure CMD Webinars and SciFam Panels showcasing his love of cars and adaptive driving. Simon’s advocacy has had a powerful influence on the CMD Community, as well as our society as a whole.

"Even before the launch of Cure CMD in 2008, members of the CMD community were connecting and collaborating through their affiliation as patients of Dr. Bonnemann at Children's Hospital of Philadelphia. From those early days of fellowship and impromptu wheelchair hockey games, Simon and his family were ever-present, forging a path to independence that so many would eventually follow. Simon's loss will be felt for years to come; his achievements and mentorship forever changing the trajectory of those living with CMD, knowing that they, too, can succeed in a future of their own making." — Rachel Alvarez, Cure CMD Our community is heartbroken and aches with this profound loss. As Simon always said, “Never stop driving.” Our community wholeheartedly will continue to drive his tireless efforts to advocate for our rare community, promoting accessibility in the workplace and adaptive driving, and pursuing real change in his honor. Simon will always be remembered as a car fanatic who changed the world, but most importantly, Simon will be remembered as a dear friend to so many.

Cure CMD invites the community to celebrate Simon’s life, and to honor Simon and his lasting impact. Join us Saturday, April 13 at 1PM Eastern (NY) on Zoom, to reminisce and share: bit.ly/CelebrateSimon.

Simon Cantos takes a selfie looking at the camera, wearing a checkered collared polo shirt.
Simon Cantos

Born in Sydney, Australia, Simon Andrew Cantos was the son of Simplicio and Teodora (Culla) Cantos of Lansdale. Simon attended St. Stanislaus Catholic Church in Lansdale. A graduate of Villanova University, he became a Senior Inside Sales Engineer at Carrier Corporation and a National Ambassador for the ABLE National Resource Center. Simon was also a car fanatic, foodie, and hero for the entire Collagen VI Family and the international Cure CMD community. Surviving with his parents is his brother John Cantos, husband of JoAnn; niece Grace, and nephew Asher; along with several aunts and uncles. In lieu of flowers, donations may be made in Simon’s name to curecmd.org/cantos.

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