Episode 9 - In Remembrance of Stewart Dolin, the founding of MISSD

This month marks a deeply significant milestone. July is the 16th anniversary of the death of Stewart Dolin, a tragedy later understood to have been caused by akathisia—a severe, drug-induced condition that remains widely under-recognized. Out of that loss, Wendy Dolin founded MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin. What began as one family’s search for answers has grown into a national and increasingly global effort to raise awareness about akathisia and medication-induced harm.

Today, MISSD marks its 15th anniversary. Over those years, the organization has worked to educate prescribers, patients, and caregivers about the risks associated with certain medications—particularly the often-overlooked risk of akathisia. What many families initially believe to be a rare and inexplicable tragedy can, upon closer examination, reveal patterns of iatrogenic harm, gaps in disclosure, and systemic failures in how risks are communicated.

In this conversation, we’ll explore that journey—from shock and disbelief to advocacy and education—and discuss how MISSD continues to expand its reach through public engagement, training, and resources.

I’m joined today by Wendy Dolin, founder of MISSD, and Jenna Sachman, Director of MISSD.

Transcript

SPEAKER_00 0:05

Welcome to AkyThesia Stories, a podcast from Mist, the medication-induced suicide prevention and education foundation in memory of Stuart Dolan. Myst is a nonprofit dedicated to raising awareness about acathesia, a medication-induced disorder that can cause suicide, self-harm, and violence. Our mission is simple. Increase education and save lives. So, hi everybody. Welcome to the Akhesia Stories Podcast. I'm your host, Ivan Kaiser. Um, and we have a special episode for you guys today. So today is uh Wednesday, July 15th, 2026, which happens to be the uh 16th anniversary of uh Stuart Dolan's passing. So, as most of you guys might know, Stuart Dolan was the late husband of Miss Founder Wendy Dolan, who we are so happy could join us today uh for the Academia Stories podcast. Um, and also here today is uh the director of Miss Janice Ackman. So uh thanks again, guys, for um joining us today. Wendy, so our listeners might know, you know, you and Stuart were uh high school sweethearts. Um, so I think it's safe to say you knew him very well. Would you mind kind of taking us back to that brief period right after his passing? Um what did you initially understand about what happened and when did you kind of find out about akathisia after that?

SPEAKER_02 1:34

For the first month after Stuart died, the whole community, his law firm, everyone who knew him were in a state of shock. You know, I always tell people if a thousand people would end their life by uh suicide, Stuart would be a thousand and one. So the first month was a blur. Nobody knew anything. But unbeknownst to me, um, one of my friends was doing her research and talked to a law firm, went through the intake process, and this wonderful gentleman said, Akithesia killed Stuart Dolan. So it's about a month and a day after I, Stuart's death, I'm walking my dog, and my girlfriend calls and says, akathesia. And I'm like, what? And I remember writing it down. I couldn't spell it, I didn't know anything about it. But that night, in fact, I looked up the article, I looked up GSK suppress data on Paxel-induced acathesia. And then it was one of those moments where I mean, I was so struck by this. And then I looked up what was on the website early on about acathesia, and all the precursors to acathesia, his you know, restlessness, his pacing started to make sense. So I didn't learn about akhesia until about a month, a little over a month after he died.

SPEAKER_00 2:57

So, Jenna, you had known Stuart uh really since you were a child. Um how did finding out about akathesia impact you?

SPEAKER_01 3:07

Yeah, well, similar to what Wendy said, it was just um kind of an explanation that explained what happened to Stu. Um as everyone else, I struggled with understanding um, you know, how this could have happened. Uh Stu is always such an optimistic and calm person, a calm presence. Um, so learning that a medication could, you know, cause such a torment and agitation was both very eye-opening and obviously heartbreaking, but helped us understand what happened.

SPEAKER_00 3:42

And then this is a question for both of you. Um, and I guess, Wendy, you can answer this first, then I'll go to Jenna. But um, what was most shocking or unexpected as you began researching medication-induced harm?

SPEAKER_02 3:53

What was the most shocking was that it was hidden. And was most shocking that it wasn't well known. I mean, I'm a therapist. I went back to social work later in life, and being an older student, I read every all the you know, supplemental reading and all the extras. I had never heard about acadhasia. And then to hear what could what happened to people with acadhasia, it was just heartbreaking. It was one of those moments where how do you just sit with that information and not do anything? It was just, you just can't hide drug trials. You can't hide side effects that ultimately leads to people's deaths.

SPEAKER_01 4:35

Yeah, um, I agree. I that you know, healthcare professionals and consumers were both very unaware. Um, people that were prescribing the medications thought they knew maybe about the medications, but were not informed appropriately. Um, so misunderstanding the symptoms, misunderstanding how to really provide informed consent consent. Um, and then also I was surprised after we started, you know, hearing from people how many families were affected by this without having a word to put to the name, um, not being able to advocate for themselves because they didn't know what they were really experiencing, um, and neither did their healthcare provider.

SPEAKER_00 5:16

And what would you say, Wendy, um, were kind of your initial goals when you found it missed and how they kind of evolved over the last 15 years?

SPEAKER_02 5:26

That's a great question. I mean, I think we wanted to educate people about you know stopping, starting, change the dose of any med, it could lead to acadhasia. But I think it was just kind of more narrow. I can't explain it. And over time, because we were hearing about all these other meds, and because we were, you know, reaching out more, it just kept growing where it almost took on its own life form. And I think that for MIS, where we were kind of focused just local conferences in the Chicagoland area, we started to expand. And we took every opportunity we could, like the Learning Disability Conference or Crisis Management, or counselors, or alcoholics, anywhere that there could be uh people could learn. So I think the main thing I see different over the 15 years is just how broad we've become, how extensive it is.

SPEAKER_00 6:29

Kind of from that point onward, um, because another thing I'll mention is this year is the 15th anniversary of MIST's founding. Um so, Jenna, from your perspective, how has MIST changed, you know, in terms of its its reach and its impact?

SPEAKER_01 6:44

Um, I'm impressed every day and really proud to be part of Mist because I mean, what started as this grassroots organization to really honor Sword's memory and raise awareness about something we were passionate about and that was little known has become an international organization that educates all sorts of, you know, consumers. Um, we've expanded our reach to healthcare professionals, advocates, students. Um, so I'm really proud of the impact we've made over the course of many years. Um, one thing I also like we're part of the conversation um that healthcare providers are understanding we need to have about medication safety. Um, and MIS is an isn't a trusted resource to this conversation. People look to us for information and you know, trust in us to provide experiences and yeah.

SPEAKER_00 7:41

Yeah, one of the great things about MIS is that we offer so many different educational resources and whatnot, um, including two courses, free courses you can take online, um, Akithesia 101, uh, an academia uh kind of misconceptions course. So, what are some misconceptions about acadesia? And and uh these courses are offered for free to anybody. Um, but can you kind of describe uh what those courses kind of cover and who they're designed for?

SPEAKER_01 8:08

Yeah. Um I guess they're they focus on recognizing and preventing and responding to medication reactions and specifically acathesia, um, for consent and um prescription like practices um being, you know, how how we how are we prescribing safely. Um they are designed for key audiences of healthcare professionals like emergency responders. Um healthcare professionals can also earn um continuing education credit through taking these courses and then apply the resources directly to their clinical practice. Um we also offer courses that just apply directly to the general public so that everyone is able to kind of benefit from the information, whether it's clinical or more uh just objective information.

SPEAKER_00 9:03

Beyond the courses, you know, what other forms of of education or outreach has uh has missed developed, you know, um whether it be podcasts like this one or conferences or professional engagements and stuff like that?

SPEAKER_01 9:16

Yes. Um as you mentioned, many. Um we do try to meet people wherever they are available and we know where so we try to reach and have a broad way of reaching um our consumers. So yeah, we have um our podcasts that are featuring people with lived experiences. We are invited to many conferences, presentations at educational sessions. Um, we collaborate with universities and different organizations um that you know tackle certain or similar um areas that we do. Um, we also do like to have the courses, continue to work on engaging with healthcare professionals in different ways. Um yeah, and our way we have a comprehensive website that is also a great resource um to learn more about acadesia, learn more about myths specifically.

SPEAKER_00 10:08

So, Wendy, um, if someone suspects they or a loved one might be experiencing acadhasia, either after they've gone, you know, the one on our website and took the course, um, or even if they just looked it up and then on their own, um, what should be kind of the first steps that they take?

SPEAKER_02 10:28

Well, I mean, you know, I've thought a lot about that. Um, like in the case of Stuart, it happened so quickly. There really wasn't anything that could have happened. I mean, there was someone on the train track who saw someone pacing like a polar bear and, you know, didn't intervene, but you know, I understand that. Um, I, you know, the the mission of mist says, you know, talk to your doctor, call 911, or go to your nearest emergency room. I think that that's an area of mist, which I don't want to say it's controversial, but it's hard. And it's hard in the sense that many of the people experience acathesia have had more than one drug, and they're afraid to go to the hospital because they're going to be given more medications. But at this point, other than calling your doctor, other than you know, 911 in the emergency room, I think they're that's really the alternatives for right now.

SPEAKER_00 11:29

What roles do you think clinical trials kind of play? Um clinical trials and pharmaceutical disclosures really has a whole play in like shaping the public's understanding about some of these risks.

SPEAKER_02 11:43

Well, that's a real slippery slope. You know, before I started MIST, and I eventually sued the drug company for um hiding um academia, and I won in the lower court. Um the the I was under the impression, and this was my lack of awareness, I thought the FDA did the drug trials, and then they approved it. What I found out subsequently was that um the pharmaceutical companies do the drug trials. They submit it to the FDA for approval, but there's something called the revolving door policy where people from the FDA go to work for a pharmaceutical company and the pharmaceutical company goes to um works for the FDA. And so I would hope they'd be transparent, I would hope they would be diverse, and I hope they would report things in a drug trial. During the original Paxville drug trials, I believe 20 people ended their life by suicide, and 40 more became acadasic, and they didn't report it. So I'm a little leery about drug trials. Um yes, yes, don't get me wrong, medications save lives. I get that, but I don't always know how in-depth I should say the process is. You know, the how many, you know, when I was in Washington, D.C. once learning about drug trials, not all of them are diverse. Not all of them have different ages. And so it's um it's kind of hard. I mean, we we're there's a lot of leap of faith here that the drug trials are um working out. And then the second thing is I feel very much the doctors are very much the victims, too. Um, you know, doctors received something called the dear doctor letter. And, you know, in the case of Paxel, they they were advertising it as the next best thing for sliced white bread for anxiety. Turned out there was an 800% increase in suicide. So the doctors, they don't do the drug trials. So in many ways, I think that the doctors are as misinformed as consumers.

SPEAKER_00 14:00

Yeah, and it's it's interesting how you know many different people we've seen at different conferences. Um I mean, I know I've only been to two conferences now, but I know you've you've been to to many. But just hearing different healthcare professionals come up to us and say, I didn't know this, I didn't know that, you know, and um, and a lot of them not even knowing about acadesia, or maybe they heard the word, but they didn't really know exactly what it means, or or like Christina pointed out, you know, before they might get it confused with part of dyskinesia. Um, so it's it's um it's definitely just about kind of spreading the word and and getting the awareness out and whatnot. Um so yeah, and so we we have been to many different conferences. How has the conference feedback kind of changed over the years?

SPEAKER_02 14:46

I think the conference feedback has changed because we're getting more and more sophisticated. Our booth is just incredible now with so much information. But I think what we've all tried to do now is we're shifting how people we talk to people when they come up to the booth. And I'll say to them, have you seen the commercials on TV? Do you see when it says may give you suicidal thoughts? And I said there what it is is acathesia. In fact, as you know, our new campaign campaign is let's call it what it is. So when you look on TV now, I mean, just any night, all these medications, suicidal thoughts, it's acathesia. They just don't want to say that. And I think that that has really hooked people in because they will say, you know, you're right. And then they share their more and more people share their stories. And um I think that's been a big shift.

SPEAKER_00 15:46

And what challenges remain in kind of raising awareness about acadesia?

SPEAKER_02 15:53

I think, you know, the challenges are, you know, for an organization like Miss is simply based on money. I mean, you know, we're we're very grateful for our um donors. We do quite well, um, and we're getting we get a lot of you know publicity and all that. But for example, my fantasy would be that during Suicide Awareness Month, we would have a one-minute, you know, you know, informational moment saying this is academia, but that's a whole different thing. But I think that just keep on doing things and just, you know, new videos, more courses. I I I think that that's really just a challenge. And we're now going to be doing a campaign in Australia. So just that kind of a reach, you know, just more of what we're doing. We stay very close to our mission, education and prevention. And so we take more and more opportunities to do that.

SPEAKER_00 16:55

And so, Jenna, um, as a director of MIS, what key things would you wish that prescribers and consumers understood better about acadesia um and what kind of factors could improve current prescribing practices?

SPEAKER_01 17:10

Yes. Um, first I think just knowing how serious and what academia, like how serious and life-threatening this adverse effect can be and how to treat it as appropriately as possible. Um, and also that it's not just psychiatric medications. This can be any medication. Um, so just being aware for prescribers, I would say obviously knowing what you're prescribing, knowing the risks and the benefits, um, telling your patients those those things and also um always being in touch with your patient, of especially when they start, stop, or change the dose. Um, and listening to the patient. If they do feel different, if something comes up, consider it equathesia versus that in one of the ways um that that could be describing their symptoms. Um, for consumers, you know, in informed consent, uh, there is knowing why they're taking the drug and what to look for, not not to take the drug. Like there are benefits and to to just know the benefits and the risks. Obviously, keep in touch with your healthcare provider and that buddy system of telling a family or friend is always great if you're able to do that so someone else can kind of advocate for you if if needed.

SPEAKER_00 18:30

And this question is uh for both of you guys, but I'll start with you, Jenna. So kind of looking back over the years, you know, can you share some moments that have been particularly meaningful, you know, either personally or regarding the Mist's impact?

SPEAKER_01 18:47

Yeah. Um some of the I mean, there's been many meaningful moments. We've had a lot of different for especially for me, a lot of firsts of you know, from our education to our events that we raise fund right, like our fundraiser rents, but I think it's like um the families who tell us that like, you know, we've helped them, they were either the families in or individuals were either able to recognize they had apathesia, recognize it in someone else, you know, have unanswered or you know, unanswered questions answered. So being able to provide any kind of comfort or help to those families that have suffered has definitely been very meaningful. I also think being part of the conversation for health care for providers, obviously that's a huge impact if that's part of their conversation of like, could it be academia? That that's part of our hope of getting this into the medical field um and being recognized. And then off obviously, um, to honor Stuart's memory, you know, of course, this is a he'll he will always be missed and and it is always a loss, but through our mission and our efforts, being able to save others and honor others, I think is what's most meaningful at the end of the day. So that's what I guess really hits home.

SPEAKER_00 20:08

And similar question for you, Wendy. Any uh meaningful moments or memories that stand out um for you personally, these these past 15 years with myths, maybe something at a conference, maybe something you heard from someone talking about academia and um any special memories about Stuart you'd like to share?

SPEAKER_02 20:28

Well, I think the thing that drives me is I remember Stuart came home from his very first day of law school, and I think it was in, you know, tort, so I'm not a lawyer, and he said he talked about to me that he was deeply disturbed about the concept of the price of doing business, and that he was really himself upset that oh that you could people could die, but that's just the cost of doing business. So I think that echoed in my head and kind of was a motivational force. But I think the moments, and there's so many, but um Christina Kaiser, who is the director of education at MIST, we were asked to present at the Royal College of Psychiatrists in London, not knowing what we were going to expect. And I think just walking up the stairs and being in front of like 500 people who in many cases we knew more than them. And they came, several doctors came up to me and said to me, Why do you know more than me? So that was a really important moment. I think, I mean, and there's so many, I think that just um the extent of miss now. You know, a lot of organizations that are formed to honor people kind of fizzle out. I mean, I think, you know, I don't know the statistics, but it's probably pretty close. About 70 or 80%. And what's impressed me is the staying power of mist. And I think the staying power of mist is we are constantly evolving. Like, like, you know, when we first did the conferences, we were just focused on antidepressants and antipsychotics. And now it continues to grow and grow and grow. I think I'm also impressed that through shared at Mist, we hear literally from people all over the world. And to have that kind of acknowledgement and gratification and the and you know, when we do our um our awareness campaigns, we've done it internationally. So I think that's another moment. And I think my favorite moment, probably of all, is we were at a conference and a woman comes up to me running up to the booth and she goes, I was here last year knowing akathesia, you helped me save my client's life. So there's those moments, or talking to people in the military who were given so many meds. I just think I'm amazed at the impact and how many people experienced this and didn't have a name. So it's been, there's too many highlights over 15 years, but there's so many memories of making a difference, which has been so gratifying.

SPEAKER_00 23:24

If you had to pick one thing that you're really excited about kind of getting into the rest of this year or next year, when it kind of comes to like, you know, pushing this kind of out there, what are you looking forward to the most?

SPEAKER_02 23:37

Um, I think I'm looking forward to um our new another new video. I'm looking forward to more podcasts from you. And I'm particularly excited about the Australian campaign because I believe we're going to be on TV. So I think it's um that that's a deep reach. But as you know, the board of best and all of us, I mean, if we're not doing 10 projects at a time, I don't think we're doing enough. So it keeps on going.

SPEAKER_00 24:09

Is there anything else either one of you would like to share about um kind of your your outlook on how Ms is doing, what you're excited about in the future, or any other memories of Stuart?

SPEAKER_01 24:21

Um, I'm just excited to continue our mission um to honor Stu. Uh while we're our reaches beyond just that initial, you know, memory, he is our our motivation. And so it's nice to be able to remember him and help others all at the same time. Um, and I'm just proud to continue to be part of such uh a great organization.

SPEAKER_02 24:46

On a different note, Jenna used to call Stewart King Stew. Yes. So that was her relationship with him.

SPEAKER_01 24:55

Yes, he we were very close. I again I was a kid when I met him. So amazing memories of of Stuart for sure.

SPEAKER_00 25:05

And Wendy, is is there anything in particular you'd like our listeners to know about who Stuart was as a person?

SPEAKER_02 25:12

He was just an amazing guy. I mean, very laid back. I mean, it was very kind of um very funny, um, very high on life. Loved he was athletic, he loved to do things, he had he was an amazing, amazing father, husband, friend, colleague at work. And I think I think that for me, what makes this important is when we think of suicide, we want to think of just some mentally ill person who had financial problems and ended their life. And I think what we have to realize is suicide is like cancer in the sense that there's many forms of cancer, there's many forms of suicide. And unless we are considering, you know, a death that occurs after someone stopped or started a change of medication, we're not teaching people well. And I think we need an expansive view. And the thing is that most of the people that I know who have experienced acadhasia, most of them were assigned meds for just what it is to be human. Anxiety, test anxiety, um, insomnia, you know, they that sort of a thing. And I think that we just have to understand how acadesia affects people.

SPEAKER_00 26:41

Well, thank you again so much, both of you, for joining me today for this very special episode of Accathesia Stories Podcasts. And um until next time, take care. You've been listening to Acthesia Stories, a podcast from MIST. To learn more and get access to free educational resources, please visit Mist.co. Together, we can increase awareness, prevent tragedies, and save lives. At Mist, we are all for truth and disclosure, honesty in reporting, and legitimate drug trials. Thanks again for listening, and I'll see you in the next one.