Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.
In his free time, actor Mathew Horner enjoys playing video games and watching movies. Especially Disney movies and John Hughes movies (The Breakfast Club is a favorite). Like many 20-year-olds with similar interests, Mathew has had YouTube channels, and he’s also performed in theater productions. Recently, he took performing to a whole new level: In his TV debut, Mathew plays Cody on an episode called “Yippee Ki-Yay” of the ABC show The Good Doctor (airing 3/7 at 10/9c on ABC, available on Hulu the following day), marking the first time an actor with Kabuki syndrome has been cast in a major network TV drama. Dr. Jacqueline Harris, a Medical and Scientific Advisory Board member for AllStripes partner Kabuki Syndrome Foundation, consulted with the show to ensure the episode’s representation of Kabuki syndrome was thoughtful and authentic.
Mathew spoke with AllStripes about his experience on The Good Doctor set, what he hopes people will learn about Kabuki syndrome from watching the episode and why he thinks research for Kabuki syndrome is so important.
Everyone on the set of The Good Doctor was very nice. We flew to Vancouver, Canada, in October, and stayed up there for two weeks. They set us up, and we were filming most days. Usually, right before we went to go film, they sent us to a makeup trailer where they did my face so I looked the part of Cody. It was really awesome up there. I mean, it was a lot of work. We had to film some scenes 10, 11 times sometimes, but the whole experience was very nice and worth it.
Fiona (Gubelmann, who plays Dr. Morgan Reznick) was awesome. Will (Yun Lee, who plays Dr. Alex Park) was amazing. David (Marciano) who played Joe, Cody’s dad, was really great. I've performed in smaller-scale acting roles, but not at this level. I'd done theater before, but never in a TV show or a movie or anything like this.
I have made videos for YouTube channels, and I think being comfortable performing for a camera definitely did help a little bit. It does feel awkward the first few times, especially when filming those videos. You feel like you're talking to no one, but you have to act like you are. When I was filming The Good Doctor I wasn’t really bothered by the cameras — I was more looking at the other actors.
When people watch Cody on The Good Doctor I hope they’ll remember that Kabuki syndrome patients are not all the same. Each of us is different in our own special way. I also hope that people will go out to do research and learn things about Kabuki syndrome. I think that more research will help people get diagnosed faster, at younger ages.
For me, my diagnosis came about six years ago. I was 14 at the time, and it took a long time to diagnose me. I'm 20 now, and it's been a journey.
We saw a lot of doctors before I finally got that diagnosis. I can’t really remember much about the appointments now — they kind of blur together — but I’m sure they were long and tedious, even if the doctors were really nice. Sometimes they did feel almost pointless because I still wouldn’t have a diagnosis afterward.
AllStripes has a research program for Kabuki syndrome, which can help researchers learn more about the syndrome. AllStripes itself can be a much easier way to keep your medical records. If you have physical records, it's way easier to lose or misplace documents, but making an account with AllStripes means you can look at your medical records all in one place, online.
Research is very important to help us understand the syndrome a lot more. I hope that people watching me play Cody on The Good Doctor will remember that not all Kabuki patients are the same, and I hope that researchers will find out more about the syndrome soon. This could help more people connect with Kabuki syndrome patients, because they'll understand a lot more about the disease itself and some of the characteristics of the disease.
Watch Mathew’s episode of The Good Doctor, “Yippee Ki-Yay,” on ABC March 8, 10/9c, available to view on Hulu the following day.
Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.
Sign UpJoin our early breast cancer registry to be counted and share your story with research.
Learn More
List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.
Join Now
Download this list to save onto your phone or print it out for your fridge!
Download this poster to save onto your phone or print it out for your fridge!
Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
