 Okay, everyone. Welcome. Very thankful to have you join us here this evening. My name is Dan. I am the Director of Development Programming for the Bedford Playhouse. I want to welcome you to what I'm sure will be yet another fascinating conversation as part of our ongoing series and discussions with filmmakers. Before we start and before we introduce AJ, I want to just remind everybody to please feel free to ask questions at any time. You can do so with the Q&A button that is at the bottom of your screen. It's at the top of your screen on your iPads or iPhones. Please refrain from using the chat feature if you can. It's okay if you do, but we prefer to go to the Q&A. Just makes things a little bit easier for us to follow. I hope everyone was able to watch the film. And we're going to talk in a little bit about that. But I want to also remind everybody to please consider if you appreciate this type of programming. Bedford Playhouse is a nonprofit. We welcome any contributions. AJ I'm sure will share some information about how to donate for the cause to find a cure for RET syndrome. So please consider doing that as well. We really, really appreciate all of your support. We can't do it without you. The community really is the backbone of everything that we do. So let me quickly introduce AJ. AJ Tesla is an award-winning television film and new media producer and director. He's created thousands of hours of content for the likes of Netflix, Comedy Central, Lionsgate, MTV and Sony. His narrative feature directing debut which is called Hero Mode is due out this year. And I would like to welcome AJ to the forum. There he is. He's on the road. Live from my car. Thank you so much, Dan. Thank you to everybody who watched the movie. Are people going to watch the movie now or people have already watched the movie? Well, hopefully they have watched the movie. But if not, they will be doing so shortly. Got it. And we're going to do Q&A now or are we going to give people a little bit? A little bit. People can ask questions. I have a bunch of questions for you. But people should ask. Feel free to throw them out there for AJ if you watch the film. If you want to learn more, there's a whole bunch of topics we can cover. Great. Well, our dream when we made this movie was that we could share it with people in hopes that it would have some impact. And I think it was that if you ever ran across somebody with red syndrome or with really any complex disorder, you would have a greater understanding of what that person is going through. Understand that that person may be locked inside their body and unable to do the things that you would hope that they would be able to do. And also understand the impacts it would have on that person's parents and family around them. So I'm excited to hear your questions. And please, if the movie didn't make it clear, I'm a completely open book. And there are no questions that will offend me. There are no questions that I won't answer. So please feel free to ask me anything that sparked your fancy or curiosity through watching. And let's start off with actually probably I'm sure one that is on a couple people's minds is, especially for those of everybody who has watched the film is what's what's the current status especially in this COVID world. How have you guys been managing. I mean I'm sure things were challenging enough beforehand. How did how did COVID affect how you guys were going about your daily lives. Well, it dramatically changed our entire life. We were very, very nervous about what COVID might do to Maggie. She already had respiratory issues was already struggling to breathe on a daily basis. So we looked at how the hospitals were starting to triage care. We were just afraid that because of Maggie's disability that she wouldn't be a priority for care. So it was very important that we avoid it. We packed up our house in Los Angeles we got into an RV and we left Los Angeles in August and we traveled around the country, making sure to avoid people everywhere at all costs. So we were staying off created forests around the back acre of a farm in Oregon or wherever it was just keeping our distance from people. We've also documented that it's on our YouTube channel and Magnolia's Hope right now in my car because my family is at a campground outside of Dallas, made a place where there is no cell service so I had to drive frantically so that I could find enough service to be here for all of you guys. And she's she's 10 years old now correct. She's 10 this movie we finished. The last shot of her and the soccer. The soccer goes at the end of the movie I think she was nine but other than that she's basically 16 is what most of the film I was thinking was. So one question that we actually had submitted via email prior to this is sort of I guess more of a technical question. Given that you were you know what were the challenges you were really filming your day to day life and activities. So did you ever have a moment where you felt that it was. I don't know if the word intrusive is the right word or that you just felt like not today and I don't feel like doing this today. I don't have those moments and how, how did you like figure out what was really what I mean how much did you actually shoot that you didn't use you must have hours and hours and hours and hours of unused footage. What one of my favorite stories is just when I, when I first started talking to our editor, Scott Shepherd, who had done a couple of these kinds of docs so he's asking what kind of footage we had. I don't know I think it's probably like eight to 10 hours of footage, not really doing the math my head of how much. And he said okay well you can probably get like 10 to 15 minutes out of that. And then I said I think we can probably stretch a following feature out of it. And I dropped off all the footage and a couple days later he called to say there's 150 hours of footage here. So you're probably right we have a whole feature. So, there was a lot of footage you know I think that like any parent I was just filming our day to day life. And a lot of it we were filming for doctors. Hey, this is happening. Can you take a look at this and a lot of the therapies we were filming because some of our therapists were local so we were filming and then sending the videos to them for them to review what we were actually doing. And certainly times when we didn't want to film there were times when Maggie let us know that she didn't want to fill in fact a lot of the reasons why there were there were a lot of YouTube videos early on, not so many later on is that Maggie just kind of decided that she made it clear that it wasn't something she really wanted to be doing. And it kind of dovetailed with the same time with when she started experiencing seizures really had a had a tough time for a couple of years. And so that made sense. Now she's a little bit more more medical to filming and has opened up a little bit more and I think she especially likes to show the positive angles of it, or so then. And things I mean and just also mentioned for everybody who just joined us. Please feel free to ask questions using the q amp a forum. I'm assuming everybody here has has most everybody seen the film. For those of you who haven't we will share the link again along with the recording of this conversation but the thing I mean there were so many moments that are really powerful and effective and I think certainly it's understood that the purpose the motivation behind the film is to raise awareness, not just for your own situation but for everybody who has has this condition. And the moment I think it's very early on you rattle off all the different therapies and the, you know, occupational therapy and speech therapy and, and all that and you talk about how you and your wife really stopped your lives to, to do this for her. What did, what was happening behind if you can talk about it. What was happening behind the scenes that you didn't show like I mean we saw a lot of the footage where she was, where she was cooperating where she wasn't cooperating. I mean, can you give us a sense of really how many hours a day. This was going it was literally all day, I'm assuming. Well, it was most the waking hours we were focused on. We had split it up so we're, we also had a nanny Shelley, who was with us, we kind of all split it up and said, I'll be responsible for physical therapy you responsible for physical therapy and then every minute of every day that we were with her. That's what we were doing with her. That's how we engaged with her she couldn't use her hands really she wasn't playing with anything so it also gave us things to do with her that were engaging that we knew were helpful, and we're helping her learn how to pee her better self. So, she never really got into TV, there was never like a downtime for her she was always just skipping around and running around. And so we wanted to really try to focus her energy and try to help her be helper as much as we possibly could. So that's, that's kind of how, how we played with her we just treated all of that as play in the early days. And then, when we added in vision therapy that was an additional half hour every day. She was going to, in the movie I said she was going to the school where they were doing ABA therapy with her all day so, you know really it was, it was, it was pretty constant for most of her early development. And once we found out about the diagnosis from like three to five three to six it was pretty constant. The vision therapy started really frustrating her towards the end of that. So, pulled back on that, and then start focusing on other stuff that she started going to school and so we just didn't have that much time to actually work with her and once we put her in school. We started focusing more on her education. That's when I started focusing more on getting back to work to so we ended up being able to pull back having to pull back on that other therapies. You actually just mentioned it we have a couple of questions about school what what is her school like what's what kind of what is like her school experience. We have jumped around a little bit so her her preschool was a special needs school that we focused on autism and autism development because that was a lot of what we what the diagnoses were early on was it might be something on the spectrum for you to attempt it. So in Los Angeles there were schools that were really dedicated to that that's what she focused on in preschool. Then her the public school that we that they were trying to center to she went was a charter program school for typical kids was a very good school. But we showed up at the first day and every other kid was attended to by a nurse and essentially catatonic that just was not what was the appropriate for Maggie. So we pulled her out of that we spent a couple of months trying to find the right school that this whole system has been very complicated to navigate. We ended up settling on a home school program called Kava, which is all virtual so we were already prepared for virtual schooling well before virtual schooling became what everybody was doing. And they had a community program where twice a week, they would have a classroom setting. And so she went with an aid to that setting and the rest of the time was home and that allowed her to do her school on her own timeline. Because it's while she is cognitively appropriate in every way. It does take a little bit longer to get those answers out. She can't just say yes or no or she might not be breathing at the time so she can't give you those signals. And then in third grade we had enrolled her in a completely typical classroom. She was in a typical classroom with about six other kids, seven other kids. And it was a private school that was that our son was going to preschool and they were very accepting of us and our family and that was the perfect setting for her and we loved it. And she went there from October of 2019 until they go to schools in March of 2020. And then we went back to just homeschooling her. We bought all of the books. Went on the road and figured we would teach her all the things we could on the road and she would be in life experiences or things that way. And now we're excited to be enrolled in her in a public school in Connecticut. Right. So you talk that you mentioned it. So if I'm am I correct I think I've seen this and you mentioned it was on your website. It's often misdiagnosed as autism. Is that right. Yeah, I think that early on. It's often misdiagnosed autism. It used to actually residue used to be on the autism spectrum used to claim that it was one of the most abilitating disorders for females on the autism spectrum. It is no longer on the autism spectrum but I think that's mostly because it's got its own thing now and autism spectrum is the spectrum of a variety of different disorders that all kind of have the same type. So so so can you clarify just sort of like what was the timeline from when from when you know you started noticing that she needed there's something something going on to when she was officially diagnosed and I know you talk about that date being seared into your memory like what was the timeline how long did it take them to diagnose her. So she was born with a little bit of torticollis when she was when she was born and so at about three months we were seeing a PT that PT was working with her on and off over the next 12 months or so. And it was around the time that we noticed that she had hypotonia that she couldn't really stand up but she wasn't squatting properly. That she suggested we talk to some other specialists. So that process from there was about 15 months until about two and a half at two and a half we met with a developmental pediatrician out in Los Angeles. And her first reaction was this is definitely not autism. There is and then she ordered blood tests, which we were hesitant to do because men giving getting magnet drop blood which seemed like that was going to be complicated and difficult. Took us a little bit of time to do that and then it took us about five months to get the results back. They would trickle in a variety of different disorders that they had tested of. No, it's not this. No, it's not this. No, it's not this. I think it came down to fragile X red syndrome or the two that we were waiting on. We heard it wasn't fragile X. And so then once I heard that it wasn't any of those I was still hopeful that it wasn't red syndrome either and it was just kind of this this thing we would be able to come back with some aggressive studies. And then not December, December 17, 2013. We found out that it was the red syndrome. We went to Disneyland the next day, just to get our heads out of that sad place. And we wrote, it's a small world, which for somebody with a sensory processing issue, it during Christmas time is the worst place you can take them and Maggie immediately started screaming, trying to dive out of the boat. So that was, that was our experience. Somehow, I among many moments in the film, another one that that stays with you is, I believe it's a comment your wife makes when she talks about the diagnosis and the doctor said, don't Google it. Which I think, what, what did you think about that particular piece of advice was that good advice or bad advice to knock. I think they had already Googled it. So, the advice was was ill timed. I mean, I think the advice is well intended, because the information on the internet is dated. It's based on what gets the most clicks is what gets delivered to you first, and the newest information doesn't get the most clicks. So, you know, some of some of the parents that we've met along the way have said that the doctors told them to take their daughter home and love them there was nothing that they're ever going to be able to do for them. And, you know, that's changed dramatically. I think their parents who are getting diagnosed with that would kids who get diagnosed with breast syndrome now they're saying, there's a lot of really promising science, there's nothing yet, but there should be soon. Focus on the therapies now and hopefully there will be a treatment or something, something beyond that. Well within your daughter's lifetime. And I think that that's extremely promising. It's a testament to all the hard work that all the parents researchers and clinicians and scientists have done before we got even knew about. That's actually a question that's been submitted sort of goes to that but you sort of already answered it I guess sort of as the status, the current status of a treatment. So there is no there is no real treatment but there are therapies so like what are some of the therapies that have been developed it just I mean perhaps even since the film was completed between then and now. The therapies are still the same they're still physical therapy occupational therapy aqua therapy hippo therapy all those same therapies that because he really treated as a rehabilitation, because they knew how to do these things and they lost it so much like a stroke victim. You have to they have to relearn pathways their brains but as I say in the animation that sometimes are too many pathways so how they communicate with the rest of their body gets complicated. You can't just generate. Now there are promising treatments and gene therapies that are that are coming along. Shortly we hope it's been a number of years that we thought that they were coming along shortly. Yeah, so there's currently a small molecule molecule treatment in a phase three clinical study called profanity, which we all are. We'll get to market sometime in the next year. The results of that critical of that third trial. There are gene therapies from companies like Novartis and Tisha that are both exploring clinical phase one clinical trials hopefully it starts sometime in 2022 as well. And those in theory would be transformative. So we try them and people we don't know that they all attack the root cause of red syndrome so it's really promising research is very promising as well. Another question that came in was I guess this is something a little bit of what we talked about before but between between caring for her and the making of the film. How do you, how do you maintain any sort of semblance of privacy and you've given up your privacy to raise awareness for this. And I guess in a now with you guys trekking across America it's a little easier. But how do you how do you maintain your your privacy, or does it matter at this point. I don't, I don't know you know I think that we've we've taken it upon ourselves to make teaching people about red syndrome paramount, because it's this just awful thing that we don't want to, we don't want to be a part of anymore and we don't want anybody to be a part of the only way we see of getting out of that is by spreading awareness by raising money by funding research as much as we possibly can as quickly as we possibly can. So, if in the short term, we lose some privacy from that. I think the, the ends justifies the means. It's ultimately a net benefit from that's why we're all why we're all doing it. I was just showing her off for showing this movie for the sake of empathy here or pity, I wouldn't feel right about it, but you know I think that the goal here is to impact the future of all kids with red syndrome to impact the relationships that all kids with complex disorders might be able to build with people who can walk away from this movie with a better understanding of what that must be like that you know I think it all it all makes it much more worth it. Sure. This is a question that's been submitted by Jenna, who is the parent of Madden who is a six year old boy with rats. Do you feel that when you are discussing this with other organizations or in your, your travels, you're hearing more of about boys who are being diagnosed. Yeah, that conversations changed a lot since we since Maggie was diagnosed with Maggie was diagnosed, it was very much a female disorder. And I think, since then, my wife has been very, very proactive in that, in that discussion to really changing just the way we frame that because there are boys with red syndrome and, and they, they are just the same way that, that our girls with red syndrome do, and the hope is that the treatments are just the same, and all of that. And it's been, I can only imagine how hard and how lonely it's felt for, for families like Jenna's to get a diagnosis of red syndrome, and then still not feel included in a community of people who are saying, oh boy, it's different. And so I think that we've been, we've been happy to see and made a point of it in our movie to say mostly happens to girls and sometimes happens to boys, because we do want to help reframe that conversation too. We know, I know at least four boys with red syndrome, I think that it's important for all families dealing with the same kind of diagnosis to feel like a part of the same community. Yeah, and Jenna just added a comment that apparently boys are still not included in clinical trials to this day, which is a little surprising. And I think that there's almost certainly extra risk, because with a lot of the treatments with girls, it's excellent, and it's focused on the inactive X chromosome, and boys don't have an inactive X chromosome to switch that out. There may be some complications there, but hopefully that'll change as we get through these clinical trials and we always see what, what can, how, how things can be helped. All right, yeah, keep those questions coming folks this is really great. This is someone of a lengthy it's really more of a comment than a question but I'm going to read it in its entirety because I think it's important. And it reflects on the impact of the film. So this is a comment from Lisa. And Lisa says that as the first cousin of someone who had red syndrome. She was deeply touched by the courage of the film. There were a couple of junctures where she had to pause and became emotional remembering her cousin her aunt or uncle and the care, the unending care. That went into helping her live the best life she could. She passed away about a year and a half ago at 51 being born in the late 60s. She was actually diagnosed until her teens, and the years of years of not knowing what was going on were emotional exhausting. And Lisa's comment is that she is an all of the strength and perseverance, each member of your family exhibits in the same way. She was an all of her aunt and uncle and cousin, the ups and downs and multitude of unknowns are unfathomable to the average individual, and thank you for this film and your passion to raise the awareness and the support for ongoing research so you can really comment and it certainly reflects very well on the film which I think everyone will agree was was really great. So kudos to you that you deserve you deserve that one. Thank you. Thank you Lisa. I'm sorry about your loss. I think that a lot of what we're able to do now is because Lisa's parents because of Lisa and her contributions to all of us know more about red syndrome. How do you find this is actually another question that touches on that subject. How, how do you find the challenges of raising money and awareness of a condition that is relatively so rare. I mean it's it's one thing when people are raising money for diabetes or for cancer research. One of the challenges that you provide in the film, relative to the, to the world population, this is a very, very rare condition. So, so how do you, how do you make it forefront like what it what are the some of the strategies you guys have employed I mean the film is a great way of doing that, but what else can be done to raise the awareness of it. Well, I mean, I think media always helps and I work in media so that that'll be a focus of how we do it. I think that one of the, one of the things I always say at fundraisers is that you can throw money into a into an AIDS research or cancer research is very valuable, very valid causes. We all have somebody who's touched by some of these things. We really are very close to a cure for red. And to me being involved, seeing your money actually have that kind of real impact is really what philanthropy is all about. Yeah, it's you're going to support the things that matter most to you because somebody in your life is touching with a certain thing. But it's also using the money to have a real impact that with red syndrome donating to the research really has to have an impact on not just my daughter's life, 350,000 other people around the world. And because it's not degenerative, because it's a progressive disorder. They believe that with a treatment that works. I guess in the movie she just wouldn't have red syndrome anymore, that she'd be able to regain all of the things that she's lost, much easier than all of the rehab we've been trying to do while she still has red syndrome, while she still has all those neural difficulties. And so I think that that's a that's a compelling, it's a compelling concept for for causes to support. Have you been, have you continued to shoot footage and document what's been happening since, since the film ended that's where we left off. We've got Magnolia's hope to electric Boogaloo. Yeah, we have and we've documented this entire series this entire adventure as we've traveled the country. So we've been mentioning releasing that as a series on our YouTube channel at Magnolia's hope. And we should remind everyone that your website has not only information on how to donate to RETS research, but a lot of other information that folks hopefully will find informative and useful so it's Magnolia's hope. Right, no, no. Right, so everybody please. If you if you haven't yet. Check out that website. There's a lot of really, really great information on it. I guess AJ, the one other quite the last question I have that's been submitted so far is it was so uplifting. I think it's the end of the end when you talk about, you know, giving her as happy a life as she can have, and the scenes with the skiing and the soccer and all of the skateboarding and all of that. So how do you, I guess the question the way the question is framed is what are her social interactions like, which we've seen in the film. And what else has she gotten into, I guess, beyond the extreme sports? She does like the extreme sports. Yeah, social interactions are really complicated. Friends are very hard. We try to foster relationships with typical kids and with the kids of our typical of our typical kids of our friends. And it's really hard. And she doesn't engage the same way. You can't just say, come on, let's do this and then she'll do it. It's so that part has been really frustrating for her for us. So that part's hard. We've just started teaching her how to how to paint with her eyes. She's really enjoying that. She really enjoys game night with the family. And especially during this year, it's been, it's been studying. It's been skateboarding. It's been anything we can do as our own family without engaging in larger crowds. But she will be very excited to go to another Taylor Swift concert when those are allowed to have. And just one other, I guess, sort of a comment slash question was during the course of the film. We obviously see because you show it to us. The change the other changes that go into your life you had a son, and other things that happened so all obviously over the course of that time. She clearly adapted. She adapted to having a younger brother. Was there any concern about not not that he would necessarily have threats but because it's so rare but was there any concern about how she would respond to having a younger sibling. You know, they have been extraordinarily typical in their relationship. I don't think that we were concerned of how she would interact with him. I think we were. We were concerned obviously that they're not that he would have rats but not that he would have read but just because we had already lived through a period of uncertainty and a diagnosis of a severe disorder. We knew that we weren't guaranteed a healthy child. And so there was trepidation throughout his early years just to every single thing. We made sure we checked it sure was nothing so that we could be in those concerns and the two of them have developed a very typical very good relationship. They love each other. They both laugh at each other when the other one's in trouble. They both cry when the other one's crying. It's helps her. He helps move her hands to pick up things the same way that we do and he helps. He helps communicate with her computer really anything that he can do and he doesn't think about it as helping just communicating and engaging with the sister. I wish things weren't so hard to have to do that either but but I'm very happy that she has him and that we have him to. Well, before we I want to just ask if anybody has any other questions. Please feel free to post them and while we're doing that. I want to just also mention real quick that as I said at the top we have been recording this so everybody who registered will get a link to this recording. We will link to AJ site. Any other AJ if there's any other resources you'd like us to include just let us know we're happy to share them for everybody here. And if there are no other questions I want to really thank AJ for incredible film I mean it was really very very compelling certainly it's a it's a heartbreaking situation but I'm sure that with the awareness that you're building that as you said that the treatment will come relatively soon I think that you know we're believers in science and and it was it was it was so compelling I would recommend everybody watch it again because I watched it twice. And I thought it was it was even better the second time through. So thank you AJ for taking the time from your road trip. Dan, thank you very much for for putting this together and so grateful for you sharing this story and allowing the comments and questions. Right and we really appreciate your time and to all of you thank you please check out our website better players.org. We are reopening in a few weeks, and we will hopefully see most of you there. Thank you for taking the time to join us tonight. Have a wonderful rest of your evening. Thanks again AJ we hope to see you again soon.