Donna Sullivan on Rare Disease Advocacy and the Fight Behind Complicated
In this emotional and revealing interview, Donna Sullivan shares how her experience as a mother to children with Ehlers-Danlos Syndrome (EDS) led her into full-time advocacy. When her children faced chronic pain, misunderstood diagnoses, and rejection from hospitals, she realized the problem was bigger than her own family. Families across the country were being dismissed, misdiagnosed, and even accused of medical child abuse when seeking help for rare conditions. After witnessing the tragic suicide of a fellow advocate, Donna knew the silence had to end.
She discusses how she joined forces with director Andrew Abrahams to create Complicated, a feature documentary that follows four families over nine years. The film captures the medical, legal, and emotional crises that unfold when rare diseases is poorly understood. It also reveals the institutional arrogance and systemic failures that compound the suffering of already vulnerable children. Donna explains that the goal of the film is to educate doctors, empower advocates, and give a voice to families who have been ignored or harmed by the very system meant to help them.
Now, Donna is building a nonprofit and launching an impact campaign to bring Complicated into medical schools, hospitals, and advocacy groups. She encourages screenings, open discussions, and partnerships with institutions ready to learn and do better. With a background in journalism and a heart for change, she is pushing to make this a turning point in rare disease care.
References and Resources Mentioned:
Complicated, produced by Open Eye Pictures (openeyepix.org)
The documentary Take Care of Maya on Netflix
Under Our Skin, directed by Andrew Abrahams
Ehlers-Danlos Syndrome information (ehlers-danlos.com)
Complex Regional Pain Syndrome resources (rsds.org)
Postural Orthostatic Tachycardia Syndrome (dysautonomiainternational.org)
Coalition Against Pediatric Pain (tcapp.org)
Connective Tissue Coalition
Pathways to Trust
Pharmacogenetics in pain medicine
For screenings or to support the mission, visit openeyepix.org and reach out through the contact page.
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Transcript:
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Host
Dona Sullivan, thank you so much for being on the podcast.
Donna Sullivan
Thanks so much for having me, Jon. Excited to be here.
Host
Yeah, I am. I'm really intrigued to kind of dive in because unlike a lot of advocates where I mean you have your own advocate journey where you've done different kinds of advocacy and how you came into it. I'm sure we will get into but you've also decided to kind of mission eyes your message through a movie a film that you've kind of made and so tell me and tell everybody listening about complicated how it got started and and why you decided to go on this crazy long journey.
Donna Sullivan
It's a long story, so feel free to break it anytime if you need to. But essentially, 12 years ago, I had three children who were suffering with a condition called Ehlers-Danlos syndrome, which at the time nobody knew anything about. And unfortunately, people were running into some really serious problems in our medical system, especially children. So I was working as a volunteer at a nonprofit called the Coalition Against Pediatric Pain. And we started organizing other families whose children were living
Host
Sure. Yeah, yeah, sure.
Donna Sullivan
with chronic pain conditions and we very quickly realized that pain is very highly misunderstood in medicine anyways and can also create a lot of challenges for patients but when it came to kids at that time there was nothing there was no support there was very little information and so we started a non-profit and we got inundated pretty quickly with all sorts of families around the country whose kids were missing school homebound and really involved with these very serious
pain conditions, things like complex regional pain syndrome, which my own son had, which ranks higher than amputation level pain when it flares. know, there's sickle cell disease, there's all different types of pain that children live with. So we were doing that kind of advocacy. And we realized that we also needed to kind of help the medical community because we'd go into these top pediatric hospitals and nobody would really know how to help us.
So we would bring in researchers and we would have think tanks. And we flew in all these physicians who have now gone on to have very big careers and are pioneers in Ehlers-Danlos syndrome, which, by the way, is finally getting more awareness and more respect. I've always said it's the biggest story that medicine missed because connective tissue, when you think about it, Ehlers-Danlos is a defective collagen in your connective tissue. But it's actually a much more comprehensive disease state that involves the immune system, the neural
system and conceivably could affect any organ in your body because collagen is everywhere in your body. But back then they thought we were just bendy and hypermobile and so it really made getting care difficult. kind of against this backdrop of caring for my own kids and other families that were suffering terribly and having trouble accessing care.
Host
Mm-hmm.
Donna Sullivan
You know, my background is in journalism and I was working as a producer at the time and just started to think about like, these are really much bigger problems that nobody even wants to talk about because medicine, you know, is very much a do no harm business. And so, you know, we'd see these kids come in and they would have had a surgery that went really bad. And all of a sudden the parents are like, I feel like I'm doing something wrong. Like, it's like they don't want to treat us anymore, you know, and, and, you watch enough of this and you start to kind of observe and understand.
that it's a bigger problem.
Host
When you say they don't want to treat us anymore, talk, you know, I mean, I'm sure for you, it's like, I know exactly what that means. But for someone who's a parent, it's like, what are you talking about? What do you, can you kind of walk me through that?
Donna Sullivan
Sure, I can. And some of it is Ehlers-Danlos specific, but what I can basically share with you is.
know, orthopedic issues are a big challenge and part of the condition. So sometimes you would have families that would go in for surgery. Now I would know because we worked with researchers that one of the components of the condition is called mass cell activation syndrome. Basically means your body is way more sensitive to the world. And there's tons of people that walk around and they're very sensitive. They might have allergies, they might be breaking out in hives to their environment.
But some of these kids that had really high mast cell, they would go into hospital settings and be allergic to everything. know, because all think about the chemicals that are in a hospital room. So there was that nervousness that the families would have and they would go in and they would bring the blankets, the pillows, the clothing, the parents would be a little bit more on alert because maybe they've had a lot of really bad things happen in medicine. Now, a surgery would happen. We know because we've seen enough of these kids that post-op isn't always pretty.
the other comorbid parts of the condition can sometimes play a role. So for example, pain management, my daughter's a great example. Anytime she had a surgery, the top pain team would come in and she would end up in ICU. They didn't know about pharmacogenetics at the time.
Even when we learned about it and would bring it to physicians, even today, some of them will say, well, that's not real science. But what we do know is that genetically our kids metabolize, anyone can metabolize medicines differently. And sometimes you have to adjust dosing. So you might have a kid come in for a surgery. Post-op, things start to go a little sideways because their medicine's not being done right. They have what's called pots, which can flare. So now all of a sudden, you know, the physical therapist comes in and they're
Donna Sullivan
trying to get this child to walk after surgery and they're really struggling and they're really weak and they may even faint and you know is it that they're psychological and they're not trying? Is it that they're upset because they had surgery? No, it's because their heart rate is going from you know 40 to 160 and nobody's monitoring it because they just don't know to do that.
So these kids suddenly became labeled as complicated patients, complex patients. And unfortunately, the business of medicine is different than the practice of it. So you now have hospital systems that are like in and out, in and out.
So they start to be seen as problem patients. you know, for example, you my son's a great example. He had an orthopedic surgery that didn't go well. And, you know, the physician treating him was retiring. You know, good luck finding an orthopedic surgeon to follow someone else's surgery anyways, let alone a child who has a condition that when he flares, it's higher than amputation level pain. Nobody wants to touch that. So you become a medical pariah. And that's kind of what happened to a lot of these families. So that's what I
mean, by like, you go in for surgery, things start to go wrong. Parents, in their stress and their love, don't always advocate.
in a way sometimes that is conducive to good outcomes. And what I mean by that is everybody's human. And trust me, my husband, who we lost on the journey, would sometimes, his fatherly instincts would kick in. And we laugh. He was thrown out of two hospital settings because he started to get a little amped, which isn't productive, but it's human. It's very human, right? This happens all the time. So yeah, so getting back to your question.
Host
So just to clarify, mean, it sounds like at a certain point, the clients or the patients are just abandoned and said, you know, good luck, go home and we can't do anything for you.
Donna Sullivan
Yes, and that happens all the time. And sometimes it was very straightforward. We have letters that have been sent to patients, sorry, we're no longer treating Ehlers-Danlos syndrome. Well, that's great, but my child has a heart condition and I don't know where else to go now. So that was happening. But then we had other families that just, could just see, you could see the level of support being pulled back. And a lot of times that's very confusing for families, like why?
right to get medical care. And it's like, well, you do have a right to have medical care. you know, there's also the fact that sometimes there's not care for what you need. You know, a lot of these conditions don't have treatments and cures and quick answers. And clinicians are put in a really bad spot. So it's kind of what I call a sticky spot in medicine. It's a real sticky spot. So yeah, so seeing these families running into these bigger problems and having these bigger issues was hard.
But on top of that, our nonprofit started seeing another really unexpected thing happen. And it was around families coming in with child protective services having been called because the hospitals where they went to for care thought that maybe they were over-medicalizing their children or doing something called medical child abuse, which is a very serious condition. It's a serious problem in medicine. I never want to undercut that.
But unfortunately...
It's also a problem in medicine that's very poorly understood. So it really comes down to a definition that physicians are trained on. What is the definition of medical child abuse? And they look for things like kids who have symptoms that don't make sense. Maybe they look for parents who are very comfortable in medical settings and can talk to doctors confidently or have looked for care in different states, different hospital settings.
Donna Sullivan
Well, unfortunately, if you have a rare condition, oftentimes have to travel. Yeah, so it's literally the same definition. And that's something that we talk about in our film. What you're looking for for a medical child abuse mom is very similar to what a rare disease parent looks like. The problem is...
Host
All of those line up.
Donna Sullivan
The world has this fascination with kind of the macabre and the idea of Munchausen is like really popular right now, pop culture. And there has been some horrible stories come out of it. So, you know, so it's a problem in, is it a problem in medicine? Yes, it's a problem in medicine. But again, it's not one that medicine's ready to talk about. So we had a family come to us for help at our nonprofit and we were helping this family who had made a medical decision with their doctor to take their child out of the country to access ketamine.
which is a very widely used anesthetic, but it's not very well studied, especially in children. And it is something that because it's generic, there just hasn't been, hadn't been a lot of interest in at that time. Now it's being used more widely for depression and for other things. But researchers knew back then that her condition, complex regional pain syndrome, which I shared my son also had.
Host
Mm.
Donna Sullivan
did respond to ketamine. You you've got a child who has a condition that when it flares is higher than amputation level pain and this can help them. So they took the child out of the country when they came back for care. The hospital that was caring for her in Florida, they had a child child abuse physician, which is a relatively, don't say new specialty because it's been around now, I think since 2013. I probably should get that fact straight when I speak, but it's basically it's basically a specialty in medicine where
Their whole job is to find child abuse and it's hardest job in the world, know, the people that have it. But unfortunately, they're not really well trained in rare disease. These physicians have more of a forensic role.
Host
Mm-hmm.
Donna Sullivan
There's been some very high profile cases. A story just came out yesterday in ProPublica about this topic because finally the media and patient groups are starting to speak up more about it. But nine years ago when we were witnessing it, nobody would even acknowledge it was a problem that existed. So when this family came to us and the child was taken, the mom in a moment of desperation decided, they won't let my daughter come home because they think I'm the monster. So I'm going to take myself out of the picture.
And she hung herself and it was a horrific, horrific loss. was...
something that was made into a film called Take Care of Maya. was featured on Netflix and it was a personal experience that really devastated me and the network of advocates that were helping that family and helping so many others. I kind of, at the time she was taken, she was about 11. I'm still very close with them. She's now older and they were involved actually in a very high profile lawsuit. A lot of these families, it's very difficult to sue medical systems.
Host
How old was Maya at the time?
Donna Sullivan
But they did have a very high profile lawsuit that was covered in court TV every day. So, you they did end up winning a very massive judgment, which of course is now being appealed by the hospital and, you know, they're going to be in litigation forever. But she is now 21, 20 and doing great. Yeah, I saw her couple months ago. She's doing great. But it's been a very
hard, surreal, horrible loss and horrible road. Yeah, but yeah, they're very strong family. And so anyway, so that's kind of what...
Host
Yeah, I can imagine. That's horrible.
Donna Sullivan
That was kind ground zero, right? Losing Beata was ground zero. And we cried for a couple days and then talked to the other moms in the network and said, we've got to do something. We can't fix this problem if nobody can even acknowledge that there is a problem. And I don't even know which problem to start with, but let's just start filming.
So, you know, we reached out to a group of families and I reached out to a bunch of physicians and wrote what they call it treatment, for a documentary.
We had seen this documentary that had been done by a gentleman named Andrew Abraham's and it was called Under Our Skin where he covered what happens to human beings when medicine, you know, has controversy and doesn't know how to treat them. And it was beautiful. It was called Under Our Skin. It was Oscar shortlisted. And it really got to the heart of what we felt was happening to our kids. So we called him and he said yes. And we tease him a lot about that now. We're like, did you have any idea?
Because he had, even with that condition, he came into the Lyme space with a lot of support for Lyme disease in general.
Host
which is what the other movie was about under our skin, The Lyme Disease, right?
Donna Sullivan
Yeah, which is what Under Our Skin was about. So, you know, here we are trying to fund a film for Ehlers-Danlos and we can't find funding anywhere. And it was, you know, he's kind of like, oh, this is a little harder than we thought. A little more complicated, but we got it done. So we, for nine years, followed families living with this condition. We did lose almost two years because of COVID, like the rest of the world.
But we really, our goal was to make a film to show that these kids who are being shown as psychological and weak in a way, right, were actually really strong and had this much more complicated condition than what medicine understood at the time. That was our hope. And then to bring in the experts to kind of share what they knew about the condition. But the more we filmed, we found ourselves in much darker places in the medical system.
that are really surprising. And not only in medicine, but also in the legal and child protection. And there's one scene, I won't give the film away, but there is one scene that everyone's like, there's no way that happened. And I'm like, you just watched it happen real time. Our cameras were rolling in the courthouse. yeah, so that was our intention. The film, and I'm just, you know.
Host
Yeah. Right.
Donna Sullivan
I'm going to try to speak from the heart here without getting emotional is everything.
It covers families, sorry, I'm gonna try, families that we've known for a long time whose children suffered greatly and we lost them. And we didn't expect to lose them, some of them in the film. It was very unexpected. I am so incredibly proud of them.
And when you see the film and the advocacy that these young people in their darkest moments trusted, trusted Andy, Andrew, and trusted me enough to let us into those dark, dark places of what really truly happens to people who have been marginalized in our medical system or can't get care. You know, we have one child who tries to take her life. know, suicide is a really hard, dark place in chronic illness that doesn't
get enough support. So we go into some really dark places, not intentionally, but I just, always like to kind of warn people, you know, I wish this was this happy film of resilience and hope. It is a film of hope. You know, there is some really incredible things that we've captured, but there's also some dark, dark places. But I think that's how you move the needle.
these kids in their bravery, these families in their bravery are gonna show people what this really looks like. You can say I can't get help for my condition or I'm struggling to access care. Well, now the world can kind of see what this looks like and.
Donna Sullivan
You know, I'm incredibly hopeful that, you know, this film is gonna allow the people who can make a difference, who can make a change within their own institutions, administrators, hospital, lawyers. You know, I'm hoping this film is gonna give them kind of the fuel that they need or the ammunition to say, this is what we can fix, because this is a very fixable problem, but we just need the ability to talk about it. And I'm hoping that that's what this film will do.
Host
And it sounds like it's a fixable problem through education, mostly.
Donna Sullivan
Absolutely, 100%. Well, it's actually, let me back that up. It's a fixable problem through education, but it does require a couple of things that medicine's not good with. One of them is being open.
Real world evidence, clinical evidence, know, and research all need to kind of be factored in. But it also requires honest acknowledgement and transparency. And that's the part that's hard. And let me just show you what that looks like, right? So there's this group that I'm trying to get behind the film.
and they're a watchdog in medicine type group. And I thought, you know, they would really be able to help move the needle here if I can get them to look at the film. And one of the gentlemen is a cardiologist. And I went to him and said, OK, I want to show you this. I want to talk to you about this Ehlers-Danlos problem. you know, how many EDS patients? You you're retired now. How many have you seen? And I always see a couple a year. I'm like, it's 1 in 500.
Who your aortic ruptures? Who are your pots? Who is your, you I just start going down the list. And it was a really good learning thing for me as an advocate. Cause I kind of just watched his face.
And then he kind of, you you could kind of just see him like, okay, thanks. And his response was very palliative for me. And it was good for me to see that in a way because it made me realize, wow, I hadn't really thought about what that really means. Like, here's a doctor who gave his whole life to help people. And now to think, my gosh, maybe I did miss this. Like, how do doctors come to terms with that? How do institutions acknowledge that?
Donna Sullivan
the answer for that. I know it's not by not talking about it.
Host
Right. Right. I mean, I hate to call it pride, but that's there's an element of, you know, shame, guilt, pride that that psychologically plays a factor there.
Donna Sullivan
And let's be honest, arrogance, There's medical arrogance. And it's been very interesting for me as an advocate, working with different researchers in different medical institutions to see who, you know, who, what.
systems are very open and which ones aren't and you know, I had a funny kind of another advocacy story where you know some physicians that my family loved who were there for my kids during you know, We were nine years. I was nine years in a wheelchair like this was a decade of our life that we lost my children lost their childhood my husband in Inver in you know directly lost his life from the stress of what this journey did to us But I feel like
I just lost my train of thought. Sorry, that's what happens when I talk about my husband. Sorry. We were just talking about, oh, it's a guilt and the whole, how do you acknowledge it? So we decided, you know, there was a conference at, you know, I'm in Rhode Island, so Brown was having a conference and we reached out to some of our old doctors to say, we're talking about our condition. Isn't this great? We're bringing in these researchers. Isn't this great? And they were like, yeah, we're not sure that we believe that's even a problem. Like that's a psychosomatic issue.
Host
Yeah, that's okay.
Donna Sullivan
or, wow, you guys, I got, I'm not sure that that was in a psychosomatic response to surgery regarding my daughter's tethered cord surgery. Tethered cord is another one of those conditions just not very well understood. And I could have responded with, well, do you want to see the surgical video that I have from the surgeon? But I realized I'm not going to be able to make a dent in that type of institutional arrogance.
So yeah, so I don't know the answer, but you know, it was kind of a funny little experiment to reach out and say, do you want to come be part of the learning? And some did and some didn't, and you know, and I didn't take it personal.
Host
It's a fine line to walk too, because you kind of, on one hand you want your doctors to be confident and arrogant. It's just where's the, because otherwise they'd never make a decision, but you know, it's like, where's the line and where's that sensitivity and empathy while still maintaining that confidence? It's a challenge for sure. So the Oscar, the, excuse me, the Oscar, the film is Oscar qualifying. went to slam dance, premiered at slam dance.
Donna Sullivan
Yeah, absolutely. 100%.
Donna Sullivan
Yeah, so it premiered at Slamdance. It has two more places it's showing this summer. It's in, I should know this, Milwaukee. I think it's July 6th and then the 19th in Salt Lake City. I actually don't even use that. I gotta confirm those dates, but I'll, can you cut that? You can cut that, right? Out of sight, yeah. So I'll, okay, I can confirm the dates for you, but it's got two more runs and then we will, I will let you know if it's useful when the week in the theaters will be. The hope then is to get it onto a major distribution platform. Like we're setting it up for medical education.
So we'll have an education distributor where medical schools and whoever can want it. And then hopefully, his last film was on Amazon and Hulu. So hopefully it's gonna be general distribution. We just don't know yet.
Host
Got it, got it, okay. I'm sure it doesn't end with the film. You kind of have some kind of educational impact plan that goes along with it, sounds like.
Donna Sullivan
Yes, we have a very large mission. We are working out the details of the impact plan.
course, we're looking for sponsors desperately or partners or allies to, you know, and that, and that's, could be as simple as host a screening of the film and bring in your own physicians to talk about it or your own patients. You know, the, you know, we kind of started this conversation talking about advocacy and, know, I, I joke that the EDS advocates and patients really are the ones moving the needle, but they truly are like, you know, you have on Tik TOK, you have on all these social media sites and the information being shared by these
influencers is changing medicine and even having patient groups host screenings. We want everyone to own this and use it in whatever way it helps. It's a tool for everyone to use in whichever way it helps them or their advocacy work or their organization.
Host
And is that being done through the production company?
Donna Sullivan
Yes, it's open-eyed pictures and the film is called Complicated.
Host
Okay.
Is there a way if somebody hearing this wants to help support the cause they can reach out and connect with you?
Donna Sullivan
Yes, you can connect with me through open-eye pictures. Yes, absolutely. And like I said, I'm looking for as many allies and anyone who wants to help with the mission. We are very fortunate in the film.
Host
Okay.
Donna Sullivan
And we're working very closely with medical school, South Carolina is one of them, but also other places. And so, you know, when I say we're looking for allies, not only as many patients and people and advocacy groups that want to work with us, but also physicians and institutions, you know, because we can change this. This was a very dark.
So no rare diseases, they never start out good. Look at Crohn's, the story of diabetes, the story of sickle cell. It never starts out pretty, but it's what you do from a certain point forward. And I think we're getting close to that point where hopefully the pendulum is gonna change, but there's a lot of sticky problems that still need to be worked out.
Host
How many families did you follow in the film?
Donna Sullivan
So we wound up focusing basically on four main families and then there's kind of two other storylines that play out throughout the film. and it was making the film was challenging in that, you you never knew, you know, day to day, to week, month to month, what was gonna be happening.
You know, so like one of our families that we follow, she's going to go overseas. this one is in the hospital. know, do you deciding when to fly Andrew to film was actually a really big challenge, right? They're in the hospital. Okay. Well, is this going to be a good admission or bad admission? Is it worth, you know, using the very little money we have to fly him there? He's California based. So those were kind of some of the funny decisions that kind of became an intersection of filmmaking and, medical kind of.
Host
Yeah, sure.
Host
Yeah, just the logistics of it all. Yeah, for sure.
Donna Sullivan
Mojo predictions. Yeah, trying to predict is this is this something worth filming? know, is this not worth filming? And you know, he was able like, you know, he he'll tell you, you know, you talked to Andrew and he's an amazing, incredible guy with the world's biggest heart and these kids changed him. You know, they really changed him. And I think it's something that he has so much other footage of them and stuff that didn't make the film.
that hopefully we can be using in other ways. And as I said, we're getting calls already from all around the world, like this is not a US problem.
So, you know, we kind of teased him. We were just at a conference and one of the physicians is like, when's the sequel? And I looked at him, I'm like, okay. So who knows, you know, maybe there will be a sequel, which hopefully if that story will be even more hopeful than what we have now. But we'll see, we'll see.
Host
Wow.
Host
Yeah. You must have learned a ton just making the film in terms of your own advocacy practice and whatnot. Before we started rolling, you talked about creating your own nonprofit. Tell me the impetus as to why you decided that was necessary and what the goal is there.
Donna Sullivan
So as you know, advocacy takes many forms and you have a lot of people like me who volunteer. You have a lot of people who are able to do it and make a living or at least recover their time financially.
Host
Mm-hmm.
Donna Sullivan
And I've hit a point where, you know, I need to figure out how to balance. So that was my first thought was, well, if this was a nonprofit, there may be a way for me to maybe do more of the work I want to do and the way I want to do it and be able to fundraise so that I could really do it. So that was that was kind of the personal thought. But the real reason why we started it and this is probably the answer I should have started with was because it's not out there now. You know what?
the type of advocacy that we're doing.
I just, you I'm on the board for some really great organizations and their missions are critical. You know, I'm on the, like I said, I'm on the research board, the Connective Tissue Coalition. We're focusing on the research, the TCAP Coalition Against Pediatric Pain. We're focusing on the support and in summer camp to support these kids. Pathways to Trust, we're working on the medical advocacy. But I'm like, who's willing to have a nonprofit that kind of focuses on the stuff that nobody can talk
about and we're kind of more of a communication based education, I guess is the way I would describe it. So that's really kind of what prompted me to think, okay, I think we need to create our own thing so that we can, you know, define what the mission is, define what the need is, and just keep doing what we're doing, but hopefully do it at a bigger scale, you know, and so that's really kind of the other reason, you know, as I shared with you at the beginning, I tend to shoot straight and I'm kind of an open book, but all the
those things kind of came into play for me. The big joke is I have a 60 hour a week unpaid job with all the advocacy. So at some point, something's going to give in your personal life.
Host
Hahaha
Donna Sullivan
You know, one of the things, like when I talk to families, nobody wants to be an advocate, right? Nobody says, I mean, I shouldn't say nobody. I'm sure people say this is what I want to do for a living. But most people are drawn because they've had some kind of hardship or some kind of personal experience with it, or they've witnessed something that went wrong. And so, you know, I think that's also part of it is just trying to figure out, you know, all these things have gone wrong.
Host
Yeah, for sure.
Donna Sullivan
I think I have ideas and contacts to make it better. And so what's the best way to do that? And through the impact plan and through Open Eye Pictures, we are going to do a lot. And that's me. I'm Open Eye Pictures. We're doing all that impact work. But I just wanted to have a little opportunity if we needed to go in and do more sticky communication training or those kinds of things to be able to do that. That was a really long answer to a probably what was a really short question, right?
Host
No, I thought it was thorough and definitely informative. mean, I think you're in a place where a lot of advocates, especially people who had zero intention and didn't come from the medical field like nurses who kind of bump into advocacy are dealing with where it's like, how do I balance this? How do we make this more effective? Also, you know, me just being an individual talking to me is a little bit more difficult than going with the umbrella of I'm a nonprofit.
into the hospital setting. think that it makes sense for, especially for a lot of the types of people who listen to this podcast, like they're going to be in a similar boat. And open-eyed pictures, is it just open-eyedpictures.com? Can they reach you there that way?
Donna Sullivan
Yeah, it's open, I think it's openipictures.org. I should probably check it's open, open, I picks P I X, dot org. Yeah. Yeah. We're he's, like I said, we, can reach me there and he is very, determined to not just make a movie, but fuel the mission, behind it. So, you know, just know that he's got other films too, that are on the website, but that's a great place to start.
Host
.org.
Host
Okay.
Host
Amazing. Donna, thank you so much for all the work you're doing in the world and for sharing your story. And we're all excited to see complicated on one of the major platforms, hopefully very, very soon.
Donna Sullivan
Thank you. Here's hoping. All right. Thanks so much, Jonf. And thanks for all that you do talking about this. All right. Take care.
Host
My pleasure. Thanks again.
