Perry put the spotlight on Charcot-Marie-Tooth disease while starring in a Christmas movie
Joy Perry never thought she’d be in a movie. She has no acting experience, though she jokes she’s “been accused of being an actress many times.”
But when the opportunity to star in an upcoming Hallmark Christmas movie arose, she couldn’t pass it up. Filmmakers wanted a woman between the ages of 55 and 60 who had Charcot-Marie-Tooth disease to play a feisty woman named Tess, and Perry thought, “How many of us can there be? That’s totally me.”
She learned that was her a few years ago.
Perry, 57, has always been an elite athlete. She pitched multiple no-hitters in high school softball and has competed in 20 triathlons as an adult. But 10 years ago, Perry noticed she was more tired and achy than usual after running and she thought, “What’s wrong with me?” One day she noticed her calves looked skinny. It was shocking, she says, because she’s always had “these big runners’ legs.” All of the sudden, they were small.
Several unsuccessful doctor's visits eventually led Perry to the Mayo Clinic in Jacksonville, Florida, just a two-hour drive north of her home in Winter Springs. After various neurological tests, Perry was diagnosed with Type 2 CMT. Her condition is the most common hereditary neuropathy disease in the world and causes nerve damage mostly in a patient’s arms and legs. It can be extremely debilitating and affects one in 2,500 people, making it more common than multiple sclerosis. Doctors told her the condition was untreatable, incurable, and progressive.
Perry feels CMT’s effects every day. She walks with a different gait than she had before having CMT because she has no strength below her knee and walks from her hips. Her feet ache, her hands are weak, and sometimes she can’t open a jar. Her forearms are skinny. Her balance is off. She’s had to give up running. She can still bike and swim, albeit slowly, and this summer she did a 3-mile ocean swim in Cocoa Beach. CMT hasn’t prevented her from swimming with her beloved Mermaids, a small group of women in their 50s and 60s who meet in the middle of Lake Tuskawilla for morning swims.
“There are so many aspects to swimming in a natural body of water outdoors: amazing exercise, mentally relaxing, interacting with the varying wildlife and weather,” says Perry, an unattached member within the Florida LMSC and a Level 2 coach. “Every swim is unique. I feel that maintaining physical fitness in areas where I have some control will help me combat the progression of CMT.”
She may have less energy than she used to, but she’s thankful because she knows other people are worse off than her and need braces or wheelchairs or surgery.
“There are two schools of thought with CMT,” Perry says. “Take it easy and use your reserves wisely or do whatever you can to make your body strong.”
Perry subscribes to the latter, so it was no surprise when she threw herself into auditioning for the movie. She found the opportunity through the Hereditary Neuropathy Foundation, a nonprofit that promotes awareness and accurate diagnosis of CMT.
Allison Moore, the founder and chief executive officer of HNF, had a prior connection to filmmakers Maclain Nelson and his wife Clare Niederpruem, who wanted to help increase awareness of CMT. In late July, Nelson called Moore to say they were making a Hallmark Christmas movie called “The Christmas Bow” and had pitched Hallmark executives on a character with CMT. They agreed, so Nelson, via HNF, did a callout to the CMT community for amateur auditions.
Perry was all-in. She sought help from her sister, Adria Clark, who had experience with theater. They grabbed all kinds of props—a coat because the movie was set during wintertime and their mom’s wheelchair because Perry’s character needed one—and got to work. If a scene in the audition said “Tess walks into the kitchen,” Perry would walk into a kitchen. Clark was her sister's director, producer, and lighting lady.
“I joked that I’m just like Steven Spielberg,” Clark says. “We put a lot of effort in but didn’t know any better. We just thought, ‘This is what you gotta do.’ We were dying [of laughter] half the time but really working hard too.”
Perry and Clark estimate it took eight hours to film three scenes on an iPad. They only kept the ones that were perfect and re-shot stuff as many times as needed until they decided they couldn’t do any better. It paid off. The filmmakers were impressed, and Perry got a callback to read live on a video call with Nelson, the movie’s executive producer, and Niederpruem, the movie’s director.
“I think most people who are amateur, they think they need to be very emoting and stage-y,” Nelson says. “Joy had a natural quality to her that stuck out, and that’s rare for amateur actors. She really took the time to get the lighting right and do the little things to make sure it was professional.”
A week later, on a Thursday, Perry was at work when she got the call that she’d snagged the part and was expected to be in Utah for filming by Monday. “I was like, ‘How do I pack for three weeks? I’ve never been to Utah. Where will I stay?’” Perry says. “I was in panic mode.”
Hallmark handled everything, from Perry’s first-class ticket to hotel arrangements to food to COVID-19 testing. Perry was on set from Aug. 2–23, and her eldest son, Max, came for the first week, Clark came the second week, and her husband Michael came the third week. Perry says everyone associated with the film was tested for COVID-19 every three days and nobody got sick in the three weeks she was on set.
Perry had her own trailer and a schedule for where she needed to be and when.
“Every now and then, we’d look at each other and be like, ‘We’re on a movie set! This is crazy!’” says Clark, who also got the opportunity to be an extra in one scene.
On her days off, Perry didn’t rest. She’d either come on set to watch and learn from other actors or she’d bike or hike arduous cutback trails with poles in the mountains to take full advantage of being in Utah for the first time.
“She’s such an example to people not only in the CMT community but outside of it,” Nelson says. “She’s someone who deals with adversity every day but doesn’t let it define her life. It’s just a part of her life. She swims, mountain bikes, does everything. She’s really motivating, no matter what your background is. Her smile and attitude lift you up.”
Michael Rady, the lead actor in the film and who plays Perry’s son, laments being unable to hug the woman who was playing his mom because of COVID-19 concerns but felt a sense of familiarity with Perry from the start.
“I immediately thought, ‘Oh, this woman, I know her. She's the family I grew up with,’” says Rady, who had never heard of CMT until meeting Perry. “Joy looks like she could be dropped into any of my family gatherings growing up and seamlessly fit in. Just her personality, her background, everything.”
The two clicked instantly and ran lines together, and Rady helped Perry adjust to set lingo and jargon. They remain close friends.
In addition to looking like she could be related to Rady and having CMT, Perry brought more authenticity to the role because of her background in physical therapy. Rady’s character is a physical therapist, so Perry used her expertise to show him how he might help his mom get out of a wheelchair, for example.
“It was like a perfect storm of all the right things coming together,” Nelson says. “We were really lucky we stumbled upon her and have her portray this role in such a great way.”
“The Christmas Bow” premiers Nov. 8 on the Hallmark Movies & Mysteries channel, and Perry is still hoping to have some semblance of a watch party that’s COVID-19-sensitive. Perry has a big backyard that overlooks Lake Tuskawilla and has thought of bringing in a big projector screen for her family and friends, including the Mermaids, to watch while keeping a safe social distance outside.
Even if she can’t have her perfect red-carpet moment, Perry is overjoyed about her experience, which she calls “life changing,” while bringing CMT into the spotlight.
“I got to experience something so different and challenging and creative and foreign to the entire path of my life,” Perry says. “And I get to represent and advocate and create awareness for a disease that is quite common but people have never heard of. Me, a regular, average person gets a platform. It makes me want to do more.”
- Human Interest