Logan Madsen lives a life far from ordinary. He’s a brilliant artist, now a subject of a documentary film, promoted via a Kickstarter campaign … oh and yes, he has a very rare disease that only affects about 30 people globally. Somehow Madsen is taking it all in stride, learning from each project, making his mark and teaching all of us a little bit more about what it’s like to live and create under the rarest of circumstances.

Madsen was born with Miller syndrome, a very rare genetic disorder characterized by shortened forearms, eight fingers and toes, hearing loss and facial malformations accompanied by intense pain. Miller syndrome is very rare, yet Madsen and his sister Heather were both born with the disease, along with the same rare lung disease and autism. Wading through the challenges of a rare disease put diagnosing the autism on the back burner. Madsen credits the discovery and treatment of his autism, which began in 2008, with opening him up to the world. “I’ve done a 180 degree turn,” he says. “It’s like a light switch was turned on—I was very closed up and stayed in my apartment a lot, but since getting some new meds and the news of this solo show, I’ve been able put myself out there a lot more in the last 18 months.”

Madsen’s self-awareness and self-actualization is a trait passed down by his mother Debbie Jorde, who wrote and self-published a book titled Eight Fingers and Eight Toes. She credits this process for allowing her to work through and reflect on her experiences raising two kids with Miller syndrome. Now, it’s Madsen’s turn to find his voice on canvas and on film. “There are just some things that are easier to explain on film than it is to relate through artwork,” explains Madsen.

From the frank conversations between two friends, a documentary film was born. “I began taping Logan as he painted in his basement in 2008,” recalls Cinematographer and Director Nathan Meier. “I was impressed how transparent and forthcoming he was on camera. I later edited this footage to a short program.” Those recordings became the inspiration for the full-length project, now know as Logan’s Syndrome. “We began filming officially in 2011,” Meier says. “For a long time I was not sure of what it would become of it and where the story would take us.”

As luck would have it, Madsen’s story would take an exciting turn when Art Access Gallery granted him the second solo show of his career. His painting style had evolved from the portraits and still life, featured in his 2006 show, to a very personal dialogue focusing on his disabilities. This show also flung Madsen into uncharted waters of creating multiple pieces of artwork at once. He was used to producing each piece slowly and methodically, not wasting any paint, a symptom of the autism. Madsen faced his challenges, worked around them and perservered. Enhanced by the self-evaluation conducted during the many hours of filming with Meier and gratefully, having been correctly diagnosed and properly medicated, Madsen’s story would be hitting the canvas as Syndrome Psychology.

Madsen explains the motivation for the close examination of his physical characteristics by saying, “The unknown is scary. With this exhibit I am baring my reality for everyone to see. … My autism locks on to the subtle details in life as exhibited in my paintings. There is beauty and magic that exists in even a small patch of skin. We all have skin. Please come and share my rare experience and celebrate how much we all have in common.” Sheryl Gillian, Executive Director of Art Access, has seen the evolution of Madsen’s paintings and was very excited to have Logan’s work on display at the gallery, “I admire his courage in boldly inviting people to stare at his paintings so they can have a real conversation about disability and what it means,” she says. “We’re all afraid of people seeing who we really are, and Logan has stepped right outside of that box. I find that brave and admirable.”

Madsen doesn’t just see this art show or this documentary as a way to introduce himself to the world, but a way to introduce audiences to those living with disabilities and malformations. The goal is not to tell just his story but open up people to the many stories of struggle and strength, and of the pain and frustration, in being so unique.

Partially for fun, but also to keep the dialogue going, Madsen is already planning his next show, titled Freak Show, for October 2014. This show is a provocative exhibit examining the word “freak,” looking to break down stereotypes and eradicating the negative connotation of the word from our vocabulary.

If you’d like to know more about Logan Madsen, his film project and kickstarter campaign please visit kickstarter.com/projects/1750194433/logans-syndrome. But hurry, you only have Sunday, May 18 to show your love!