CATEGORIES: Living with CMT

Joy Perry and The Christmas Bow

by | Oct 5, 2020 | 10 comments

It was July 4th when I got an urgent text from my wife Allison (CEO and Founder of HNF) that read: “Maclain called me, crazy news!” Maclain is our friend Maclain Nelson, an accomplished director, writer and producer…if he was calling, it could be crazy news indeed!

“So what’s up???” I asked excitedly once I got Allison on the phone.

“You are never going to believe it,” she replied. “Maclain wants to cast a woman with CMT for the latest Hallmark movie he is filming…how awesome would that be?!”

As it turns out, Maclain was the creative producer for a Hallmark Christmas movie “The Christmas Bow.”  His lovely and talented wife, Clare Niederpruem, would be directing. One of the parts – Tess, mother of the main character – originally called for the character to be a woman in her late 50s to early 60s who was confined in a wheelchair, recovering from a car accident. Her son, a physical therapist, treats her during the course of the movie to help her get stronger so she can move on from her wheelchair.

Because of our close friendship and Maclain’s knowledge of CMT (he and Clare are writing a screenplay about a woman severely affected by CMT), he thought it would be much more meaningful if Tess was affected by something that she just wasn’t going to get better from – CMT disease. And taking it to the next level, as Maclain always does, he wanted to cast an actress that actually has CMT. 

Supporting Maclain’s desire to cast a woman with CMT were Heather Overton and Killian Beldy from Hallmark.  Being able to authentically represent a character with a real disability exemplified Hallmark’s strong commitment to diversity and inclusion in its programming. I called Maclain immediately to get all the details.

The movie was set to start shooting the first week in August in Utah – that was less than a month away! We would have to act fast…really fast…if we were going to have any chance of finding a woman with CMT that could play the part. With over 30,000 people in our database and online communities, there had to be someone that could act, right?

“Of course my first choice will be someone with experience,” Maclain told me. “But let’s not limit ourselves to just the pro’s. Make it an open casting call…you never know, we may find an amateur diamond in the rough!”

Boy, was Maclain ever right…but I am jumping ahead of myself here.

Due to the tight time constraints, I needed to marshall the whole HNF team in a hurry to make this happen.  Estela made awesome images and pushed it to social media, Courtney dropped the email blast, and Joy got the word out through our Inspire community. The responses started to come in immediately! Over the next several days, we got more than 70 inquiries. All were sent detailed instructions on how to create a self audition tape; some candidates that had experience were invited to “live” audition directly with the casting director via Zoom.

All in all, almost 20 self or live auditions were reviewed by the producers and casting director. It was going down to the wire – the first day of shooting was less than a week away. Maclain was excited about a few really strong candidates, one of whom was an amateur with no previous acting experience. He saw something promising in her, and arranged for a live Zoom audition with Clare. Despite her lack of experience, Clare thought she was coachable and a quick study, and she looked the part. Maclain asked Heather and Killian to trust his instincts, and to their credit, they did. He called me to give me the good news.

“We are going to offer the role of Tess to Joy!”, he told me on the phone. I was bursting with the good news! By Joy, he meant Joy Perry, long time HNF and Team CMT member. I had personally recommended Joy’s audition, and was thrilled that not only would a woman with CMT be cast in this role, but that she was an amateur to boot.

Allison and I spoke to Joy on Thursday July 30th when she found out she got the part. She was excited and overwhelmed at the same time – she would be leaving for Utah on Sunday the 2nd, and would be on set Monday the 3rd.

“I can’t believe this is happening to me!”, she told us on the call. Honestly, we couldn’t either. Against all odds, a woman with CMT and no previous acting experience was getting cast for a major role in a Hallmark Christmas movie. We were overjoyed for Joy, and so grateful to Maclain and Clare for wanting to put CMT disease front and center through the character of Tess.

I shared the good news of Joy’s casting with all of the women that inquired about the role and sent in auditions, and many replied, offering Joy congratulations and encouragement:

“Congratulations to Joy Perry!! I am so proud that you are representing our community so authentically.  I wish you much rest, good health and I wait impatiently for the airing of the show. Enjoy yourself and I know you will make us all so proud!”

Raylene G.

Hi Joy!! Congratulations on getting the part of Tess! I wish you ALL the best!! I am super excited about watching you play Tess in “The Christmas Bow”! CMT will make us all feel a special connection to this project!

God Bless You!! Have a blast!!   =) =)

Julianne E.

There were many more warm wishes for Joy, and lots of gratitude toward Hallmark for featuring a character with a real disability.

Once Joy got to Utah, the first order of business was getting a Covid test so she could be cleared to be on the set. After that, it was getting fitted for wardrobe (lots of active wear), and then hair and makeup so they could “age her up”… she was playing the mother of a 35 year old man, after all. Her first scene was shot on August 5th – Joy was nervous, but confident that she could do a good job.

Her main scenes were shot over 3 consecutive 12 hour days. Learning on the job, Joy said the cast and crew were so patient and encouraging during her trial by fire.

“Everybody took so much extra care with me,” Joy told me via a phone call during a day off of set. “Maclain and Clare are two of the greatest people EVER – they are just so genuine!”

Joy also had special praise for the actor playing her son, Michael Rady, as well as Anne Sward, who gave Joy on set acting lessons, and Lucia Micarelli, who called Joy a “total rockstar!” Her director Clare Niederpruem thought Joy was a “rockstar” as well:

“Joy was an absolute pleasure to work with. For this being her first movie, it was very impressive how she kept up with the seasoned actors — heck, she thrived! Her positive energy and charismatic personality brought so much light to our set. Joy also brought an authenticity to the performance because of her life experience, which was very important to us as filmmakers. We feel very lucky to have Joy be a part of this film, it certainly made it more real and beautiful.”

By day three, Joy was hitting her stride, with one cast member saying “I can’t believe how quickly you caught on!” Her nascent acting skills got Joy a round of applause from the cast and crew that day…she really felt like she belonged. Maclain echoed the kudo’s that Joy received from the cast and crew:

“I am so grateful to the executives at Hallmark for taking a chance on a new face like Joy – she was meant to help us tell this story.  From the moment I saw her audition she had a spark that I couldn’t deny. Her work ethic was unparalleled, she had the entire script memorized forwards and backwards and she continually impressed us with all of the preparation and physical therapy consulting work she did.  She helped us deliver an authentic story that is truly heartfelt. And she is hilarious as well! Several times on set she had the cast and crew cracking up with her comedic delivery and ad-libbed lines. I can’t wait for the world to experience the joy of Joy!”

Besides bringing her quickly growing acting skills to the set everyday, Joy – who is a Physical Therapist Assistant by profession – was able to help her castmates even when she was not on camera:

“As a Physical Therapist Assistant, I was able to “earn my keep” on set by providing assistance to both Patrick (Michael Rady), when he was examining Kate (Lucia Micarelli), and Dr. Burke (Nate Bynum) when he was explaining Kate’s injuries to her. I had to review with Dr. Burke over and over the correct pronunciation of “proximal interphalangeal joint” and show him where to point on the “X-ray” until he got it right. Clare even asked that I come in one day to assist. I helped with hand placement and appropriate exercises for Patrick the PT. Michael and Lucia were so complimentary of my assistance. I loved this part!”

While being on set was certainly energizing for Joy, the long days were definitely challenging for someone with CMT.  There was a lot of stair climbing,and standing around, and fatigue definitely became an issue at the end of the long shooting days:

“Looking back, I would imagine that no one really knew how uncomfortable I was. My feet and legs were throbbing. The worst part was in the middle of the night when I would wake up with my feet cramping and burning…but honestly when you live with CMT you always are slightly uncomfortable all the time.   

I could see how hard everyone was working all day so I was determined not to ask for any special consideration. At one point the Assistant Director asked if I wanted to remain in an upstairs bedroom while set changes were being made rather than continue to walk up and down the stairs and I said. ‘Oh no, I am fine.’ I was so appreciative of being selected to play Tess that I refused to ask for any special help.”

Heather and Killian had nothing but admiration for their newfound Hallmark star:

“We are grateful to HNF and Maclain and Clare for allowing us to shine a light on a condition that affects so many and bring awareness to our millions of viewers this Christmas. Having Joy as part of the production was an honor for all of us, and hopefully she will have other acting opportunities in her future. Maybe even another Hallmark movie!” ~ Heather Overton

“Joy Perry did a wonderful job. She played opposite Hallmark alumni, Michael Rady, and didn’t miss a beat. We appreciate the great warmth and honesty she brought to this role depicting the everyday setbacks and triumphs of someone thriving with CMT through the holidays.” ~ Killian Bendy

During her off days, Joy was able to explore in and around Provo, Utah, and was joined by her son Maxwell, sister Adria (who played an extra in a scene one day!), and her husband Michael during various points in the shoot. Being able to share her experience with them made her time in Utah even more special.

As her time on set drew to a close, Joy was fortunate to have her final scene on the last day of the shoot. Her “wrap” experience included being asked to make a speech by Maclain in front of the cast and crew. Emotional but grateful, Joy had these words to say:

“You guys know that this has been my first time acting, and everybody has been so kind, patient and encouraging to me…I’ve lived in this bubble for three weeks, and I don’t want it to end – I love you guys. Thank you all so much for everything you have given me!”

Thank you, Joy, for answering the challenge that was presented to you, and in the process, representing the CMT community with your presence on the screen – we are all incredibly proud of you, and can’t wait to see the movie!

The Christmas Bow will premiere on Sunday, November 8th at 10pm/9c on The Hallmark Movies and Mysteries Channel – check your local listings for details, and stay tuned for details on our virtual viewing party that night!

 

It was July 4th when I got an urgent text from my wife Allison (CEO and Founder of HNF) that read: “Maclain called me, crazy news!” Maclain is our friend Maclain Nelson, an accomplished director, writer and producer…if he was calling, it could be crazy news indeed!

“So what’s up???” I asked excitedly once I got Allison on the phone.

“You are never going to believe it,” she replied. “Maclain wants to cast a woman with CMT for the latest Hallmark movie he is filming…how awesome would that be?!”

As it turns out, Maclain was the creative producer for a Hallmark Christmas movie “The Christmas Bow.”  His lovely and talented wife, Clare Niederpruem, would be directing. One of the parts – Tess, mother of the main character – originally called for the character to be a woman in her late 50s to early 60s who was confined in a wheelchair, recovering from a car accident. Her son, a physical therapist, treats her during the course of the movie to help her get stronger so she can move on from her wheelchair.

Because of our close friendship and Maclain’s knowledge of CMT (he and Clare are writing a screenplay about a woman severely affected by CMT), he thought it would be much more meaningful if Tess was affected by something that she just wasn’t going to get better from – CMT disease. And taking it to the next level, as Maclain always does, he wanted to cast an actress that actually has CMT. 

Supporting Maclain’s desire to cast a woman with CMT were Heather Overton and Killian Beldy from Hallmark.  Being able to authentically represent a character with a real disability exemplified Hallmark’s strong commitment to diversity and inclusion in its programming. I called Maclain immediately to get all the details.

The movie was set to start shooting the first week in August in Utah – that was less than a month away! We would have to act fast…really fast…if we were going to have any chance of finding a woman with CMT that could play the part. With over 30,000 people in our database and online communities, there had to be someone that could act, right?

“Of course my first choice will be someone with experience,” Maclain told me. “But let’s not limit ourselves to just the pro’s. Make it an open casting call…you never know, we may find an amateur diamond in the rough!”

Boy, was Maclain ever right…but I am jumping ahead of myself here.

Due to the tight time constraints, I needed to marshall the whole HNF team in a hurry to make this happen.  Estela made awesome images and pushed it to social media, Courtney dropped the email blast, and Joy got the word out through our Inspire community. The responses started to come in immediately! Over the next several days, we got more than 70 inquiries. All were sent detailed instructions on how to create a self audition tape; some candidates that had experience were invited to “live” audition directly with the casting director via Zoom.

All in all, almost 20 self or live auditions were reviewed by the producers and casting director. It was going down to the wire – the first day of shooting was less than a week away. Maclain was excited about a few really strong candidates, one of whom was an amateur with no previous acting experience. He saw something promising in her, and arranged for a live Zoom audition with Clare. Despite her lack of experience, Clare thought she was coachable and a quick study, and she looked the part. Maclain asked Heather and Killian to trust his instincts, and to their credit, they did. He called me to give me the good news.

“We are going to offer the role of Tess to Joy!”, he told me on the phone. I was bursting with the good news! By Joy, he meant Joy Perry, long time HNF and Team CMT member. I had personally recommended Joy’s audition, and was thrilled that not only would a woman with CMT be cast in this role, but that she was an amateur to boot.

Allison and I spoke to Joy on Thursday July 30th when she found out she got the part. She was excited and overwhelmed at the same time – she would be leaving for Utah on Sunday the 2nd, and would be on set Monday the 3rd.

“I can’t believe this is happening to me!”, she told us on the call. Honestly, we couldn’t either. Against all odds, a woman with CMT and no previous acting experience was getting cast for a major role in a Hallmark Christmas movie. We were overjoyed for Joy, and so grateful to Maclain and Clare for wanting to put CMT disease front and center through the character of Tess.

I shared the good news of Joy’s casting with all of the women that inquired about the role and sent in auditions, and many replied, offering Joy congratulations and encouragement:

“Congratulations to Joy Perry!! I am so proud that you are representing our community so authentically.  I wish you much rest, good health and I wait impatiently for the airing of the show. Enjoy yourself and I know you will make us all so proud!”

Raylene G.

Hi Joy!! Congratulations on getting the part of Tess! I wish you ALL the best!! I am super excited about watching you play Tess in “The Christmas Bow”! CMT will make us all feel a special connection to this project!

God Bless You!! Have a blast!!   =) =)

Julianne E.

There were many more warm wishes for Joy, and lots of gratitude toward Hallmark for featuring a character with a real disability.

Once Joy got to Utah, the first order of business was getting a Covid test so she could be cleared to be on the set. After that, it was getting fitted for wardrobe (lots of active wear), and then hair and makeup so they could “age her up”… she was playing the mother of a 35 year old man, after all. Her first scene was shot on August 5th – Joy was nervous, but confident that she could do a good job.

Her main scenes were shot over 3 consecutive 12 hour days. Learning on the job, Joy said the cast and crew were so patient and encouraging during her trial by fire.

“Everybody took so much extra care with me,” Joy told me via a phone call during a day off of set. “Maclain and Clare are two of the greatest people EVER – they are just so genuine!”

Joy also had special praise for the actor playing her son, Michael Rady, as well as Anne Sward, who gave Joy on set acting lessons, and Lucia Micarelli, who called Joy a “total rockstar!” Her director Clare Niederpruem thought Joy was a “rockstar” as well:

“Joy was an absolute pleasure to work with. For this being her first movie, it was very impressive how she kept up with the seasoned actors — heck, she thrived! Her positive energy and charismatic personality brought so much light to our set. Joy also brought an authenticity to the performance because of her life experience, which was very important to us as filmmakers. We feel very lucky to have Joy be a part of this film, it certainly made it more real and beautiful.”

By day three, Joy was hitting her stride, with one cast member saying “I can’t believe how quickly you caught on!” Her nascent acting skills got Joy a round of applause from the cast and crew that day…she really felt like she belonged. Maclain echoed the kudo’s that Joy received from the cast and crew:

“I am so grateful to the executives at Hallmark for taking a chance on a new face like Joy – she was meant to help us tell this story.  From the moment I saw her audition she had a spark that I couldn’t deny. Her work ethic was unparalleled, she had the entire script memorized forwards and backwards and she continually impressed us with all of the preparation and physical therapy consulting work she did.  She helped us deliver an authentic story that is truly heartfelt. And she is hilarious as well! Several times on set she had the cast and crew cracking up with her comedic delivery and ad-libbed lines. I can’t wait for the world to experience the joy of Joy!”

Besides bringing her quickly growing acting skills to the set everyday, Joy – who is a Physical Therapist Assistant by profession – was able to help her castmates even when she was not on camera:

“As a Physical Therapist Assistant, I was able to “earn my keep” on set by providing assistance to both Patrick (Michael Rady), when he was examining Kate (Lucia Micarelli), and Dr. Burke (Nate Bynum) when he was explaining Kate’s injuries to her. I had to review with Dr. Burke over and over the correct pronunciation of “proximal interphalangeal joint” and show him where to point on the “X-ray” until he got it right. Clare even asked that I come in one day to assist. I helped with hand placement and appropriate exercises for Patrick the PT. Michael and Lucia were so complimentary of my assistance. I loved this part!”

While being on set was certainly energizing for Joy, the long days were definitely challenging for someone with CMT.  There was a lot of stair climbing,and standing around, and fatigue definitely became an issue at the end of the long shooting days:

“Looking back, I would imagine that no one really knew how uncomfortable I was. My feet and legs were throbbing. The worst part was in the middle of the night when I would wake up with my feet cramping and burning…but honestly when you live with CMT you always are slightly uncomfortable all the time.   

I could see how hard everyone was working all day so I was determined not to ask for any special consideration. At one point the Assistant Director asked if I wanted to remain in an upstairs bedroom while set changes were being made rather than continue to walk up and down the stairs and I said. ‘Oh no, I am fine.’ I was so appreciative of being selected to play Tess that I refused to ask for any special help.”

Heather and Killian had nothing but admiration for their newfound Hallmark star:

“We are grateful to HNF and Maclain and Clare for allowing us to shine a light on a condition that affects so many and bring awareness to our millions of viewers this Christmas. Having Joy as part of the production was an honor for all of us, and hopefully she will have other acting opportunities in her future. Maybe even another Hallmark movie!” ~ Heather Overton

“Joy Perry did a wonderful job. She played opposite Hallmark alumni, Michael Rady, and didn’t miss a beat. We appreciate the great warmth and honesty she brought to this role depicting the everyday setbacks and triumphs of someone thriving with CMT through the holidays.” ~ Killian Bendy

During her off days, Joy was able to explore in and around Provo, Utah, and was joined by her son Maxwell, sister Adria (who played an extra in a scene one day!), and her husband Michael during various points in the shoot. Being able to share her experience with them made her time in Utah even more special.

As her time on set drew to a close, Joy was fortunate to have her final scene on the last day of the shoot. Her “wrap” experience included being asked to make a speech by Maclain in front of the cast and crew. Emotional but grateful, Joy had these words to say:

“You guys know that this has been my first time acting, and everybody has been so kind, patient and encouraging to me…I’ve lived in this bubble for three weeks, and I don’t want it to end – I love you guys. Thank you all so much for everything you have given me!”

Thank you, Joy, for answering the challenge that was presented to you, and in the process, representing the CMT community with your presence on the screen – we are all incredibly proud of you, and can’t wait to see the movie!

The Christmas Bow will premiere on Sunday, November 8th at 10pm/9c on The Hallmark Movies and Mysteries Channel – check your local listings for details, and stay tuned for details on our virtual viewing party that night!

Watch our fun meet and greet with host, Rob Moore, producers, Mclain & Clare and Hallmark’s new CMT actress (as well as real life patient), Joy Perry!

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10 Comments

  1. Marsha Katz

    After watching The Christmas Bow today, I immediately wanted to know who played Tess because I was pretty sure it was an actual actor with a disability, and I wanted to see if that was true. And reading here, I found out that Hallmark had actually represented a disabled woman with a disabled woman! How refreshing and appropriate. I have only one tiny constructive criticism. When you wrote, “ One of the parts – Tess, mother of the main character – originally called for the character to be a woman in her late 50s to early 60s who was confined in a wheelchair, recovering from a car accident, “ I immediately heard nails on a chalkboard. As the wife (and now widow) of a lifelong wheelchair user, I came to understand that my husband’s wheelchair never “confined” him. On the contrary, it freed him to work, travel, volunteer, cook, drive, ski, play tennis and basketball, and so much more. I expect that Tess’/Joy’s chair does much the same.

    Reply
  2. Linda Schiraldi

    Congratulations!
    What an awesome experience for you.
    I’m sure you enjoyed every moment.
    Looking forward to watching the movie!
    Linda Schiraldi
    Your neighbor and Terri’s friend.

    Reply
  3. Raylene G.

    Joy Perry, you are a beautiful woman! Of course a perfect fit, being a PTA is just naturally fantastic for this role and a troopers soul gets you through the night time pain. Cheering you on with twizzlers and popcorn at the ready on November 8th.

    Reply
  4. Linda Ray

    I’m very excited about seeing this movie with a “real” CMT lady in it.

    Reply
  5. Cathy Grannen

    Wow! This is so encouraging to the CMT community. Thank you, Joy, for your courage to “step up” to this challenge and to Hallmark for recognizing the need to share the awareness of this disease. Will share the view date with others and look forward to watching.

    Reply
  6. Christine Linda Wodke

    Joy was my coach for a year. I also raced with Joy and met her in Austin when I raced there and she was an assessor for the para triathletes. I cannot say enough good things about Joy. She is such an awesome lady. I am so excited for her to represent our community.

    Reply
  7. Susie Weston

    I am so proud of Joy and thrilled for her, What a great opportunity to get this horrific disease out there!! Joy looks just like I thought, gorgeous and sweet. I REALLY wanted the role Role of Tess. I can’t give up yet without trying, so many parallels with my own story. Thanks for the opportunities!

    Reply
  8. Robert Moore

    It was an honor to be a part of this process – I am so proud of Joy Perry for taking a huge risk and representing the CMT community with grace, style and authenticity!!!

    Reply
    • Diana Struthers

      Can’t wait to see one of our own on tv representing a disabled woman and mother. Some things in life can’t be really understood without living them. Thank you Joy for helping enlighten others of the daily challenges so many face.

      Reply

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