S2 E20: The Alex Manfull Fund Reflects on the Past and Looks to the Future

The Manfulls open up about losing their daughter, Alex, to complications of PANDAS/PANS—and how that loss became a focused mission to change the way medicine recognizes and treats infection‑triggered neuroimmune disorders. From kitchen‑table grief to national and global collaborations, they map the work that turns confusion into clarity and hope into measurable progress. The Alex Manfull Fund (TAMF) is born.

Susan walks through the three pillars that guide TAMF's strategy. Awareness comes alive through 36 Hours in DC, where a standing‑room dinner, a 5K, Hill outreach, and a researcher brunch connect families, clinicians, and scientists. Education and dialogue comprise the centerpiece in the TAMF international symposium in Portsmouth, NH. Championing medical rule‑outs when psychiatric symptoms strike and citing Dartmouth’s Neuroimmune Psychiatric Disorders Program as a model for immune‑informed psychiatry. Research takes center stage with proteomics that distinguish PANDAS sera from healthy  controls, promising a practical biomarker, and with studies exploring the IL‑17/IL‑23 pathway’s role in blood‑brain barrier permeability, OCD, psoriasis, and psoriatic arthritis. They also preview new projects on Lyme interactions at the BBB, tonsils and adenoids as microbial reservoirs, and microbiome signals that may shape onset and flares.

Advocacy binds it all together. Susan details TAMF's response to the AAP report that they believe sidelines key literature and harms access to care, and she shares that PANDAS/PANS is advancing toward being eligible within the DoD’s PRMRP—opening a vital funding stream. With NIH cuts stalling trials and lab work, they explain why seed and bridge funding from donors keeps critical studies moving forward so those findings can scale when federal support returns. Along the way, they celebrate young leaders joining their board and a growing, global network committed to faster diagnosis, better treatment, and fewer years lost.

Be part of the momentum. Subscribe and share this episode with someone who needs clarity on PANDAS/PANS. Your voice and support move research forward and bring families closer to answers.

Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.

Credits: Music by Kingsley Durant from his "Convertible" album

To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org

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Transcript

Host Introductions And Mission

SPEAKER_01 0:07

Untangling Pandas and Pans is a podcast about two little-known medical disorders characterized by the sudden and dramatic onset of symptoms such as obsessions and compulsions, vocal or motor ticks, and restricted eating behaviors, and a whole host of other symptoms following a strep or other bacterial or viral infection. I have the privilege of interviewing some of the top researchers and clinicians in this rapidly growing area, known by various names such as immune-mediated neuropsychiatric disorders, infection-associated neuroimmune disorders, and autoimmune encephalitis, or simply pandas and pans. My name is Dr. Susan Manfell. I am a social psychologist, the executive director of the Alex Manfell Fund, and the mother of Alex Manfell, who died at 26 years old due to pandas. A disorder my husband and I knew next to nothing about. Certainly not that our daughter could die from it. So as the executive director and the co-founder of the Alex Manful Fund, I'm in a very good position to reflect on our accomplishments. I asked my husband, Bill Manful, who also goes by Towney. Townsend is his middle name, and Towney is short for that. I asked him to join me. He is the co-founder and he sits on our advancement committee and does a whole lot behind the scenes. Downey hinned and he hawed and finally agreed. And he brought a long list of questions that he's collected for this particular episode. So we are the guests for today's episode. Kind of reminds me of something my grandfather used to say. Where are the guests? There are no guests. Well, in this case, we are the guests. So we are excited to get started, right, Tani?

SPEAKER_00 3:01

Yes.

Building The Fund’s Core Pillars

SPEAKER_01 3:03

All right. Well, the Alex Manfell Fund was established, as I think most of the listeners know, after the death of our daughter, Alex Manfell, Alexandra Coulter Manfell. She died on August 7th, 2018. She was our only child, and she was the very center of our lives. We were a very close family. She grew up always doing something. You might find her conducting experiments in the kitchen sink, creating concoctions that stunk or foamed or steamed or turned different colors. Or you might find her riding her scooter or reading, writing, drawing, painting. She also enjoyed directing plays with her beanie babies and our Glenabamal terrier, Bilbo. As an only child, it's very easy to have a big imagination. She also enjoyed acting in plays with her longtime friend Sophie. They would dress up, play the piano, or any of the instruments that Towney had from his childhood in Africa, and parade around the house. It was kind of like being in a cabaret when we had people over for dinner. And we always had people over for dinner and various other events. You see, our house is built on top of the land where the first meeting house stood in Portsmouth, New Hampshire in the 1600s. Our house was built in 1740, and we thought actually maybe it still had some of the spirit of the meeting house in that we we had so many people over so frequently. And there were lots of animals around. I mentioned Bilbo, but Alex also had a cat early on. She would go on to have quite a few cats and quite a few uh dogs as well. Our home was abuzz with activity. And Alex, Alex herself, she was funny, she was serious, she was contemplative, she was grounded. She was herself, and we loved her beyond word. And when she died on August 7th, due to complications stemming from pandas, we were devastated, absolutely devastated. This was nothing that we ever expected to happen. Our daughter was happy. Of course, she didn't like having pandas, but she was happy. Having just been diagnosed formally with pandas slash pans by Dr. Beth Latimer, she said that she wanted to tell everyone about these disorders. She was so pleased to be finally diagnosed, and she didn't want anyone else to suffer through what she had to, going to many different doctors trying to find out what she had. She had no history of psychiatric illness and um was extremely well balanced in her approach to life until about the last year or so of her life. But even then, she still led a very fulfilling and uh successful life. So when she died that evening, sometime between four o'clock and six thirty, August 7th, we we were in shock. In fact, I said to her former but longtime babysitter who found Alex, my response was, you're kidding. I was so shocked. When we were able to gather our thoughts, and also because a question that we got frequently after her death was, What are you going to do? And we realized that both of us were driven by the idea that we didn't want this to happen to anyone else. We thought about why this happened because we think it's was entirely preventable had she been diagnosed earlier and had she been treated earlier. And we thought about what were the factors that um contributed to her not being diagnosed and her not being treated earlier in her life, and we used those observations and, as I said, conversations with other people in the medical field and parents to determine what our mission would be when we set up the Alex Manfold Fund. We thought, what would be the factors that would be most important in advancing this area of pandas and pans? What would be the factors that would be most instrumental in preventing a death like Alex's? Because it should not have happened. She should have been diagnosed earlier, and she should have been treated earlier. And had those things happened, I think that she would be with us today. There were three factors that we determined would be most important. Awareness. We were not aware of pandas or pans until the last couple of years. When Alex diagnosed herself as having pandas. Education. Now there are more doctors, but there are still not enough. And there still remains a great deal of skepticism about these disorders. And research. We knew that we needed to fund research. We needed to further understand the pathophysiological pathways that enable the autoantibodies to cross the blood-brain barrier. We need to know more about how best to diagnose these patients with the presenting symptoms that have now been identified. We needed to know more about how best to treat pandas and pans. And further, we needed to know about epidemiology. How many people have this disorder? And we still don't know that. But we thought that if we were able to contribute to research that would convince doctors that they should be educated in this subject. Those are the three main areas. I'll identify a fourth area because we do a lot of advocacy work. So that's probably a fourth area. And all of those, if we were to increase awareness, support education, and support funding for research, we thought we we would be able to move more closely to our vision. Our vision is that there would be no more lives lost to pandas and pans. It's really quite simple. No more deaths due to pandas and pans. And also no more years of lives lost while searching for a diagnosis and treatment. That's what guided us way back at the very beginning, when we were working with another pandas pans organization and getting our feet on the ground. So we just passed our fourth anniversary, and we are looking forward to the future. We are a national organization, but we have very strong local roots. And as a matter of fact, we have, I guess the best way to say it would be that we have arms that reach out globally. We work closely with our European colleagues, and we are also in touch with advocacy groups in several countries in South America and in India. I hope I haven't missed anyone. But this is a global problem, and we think that it demands conversation among the various advocacy groups and particularly among researchers and practitioners globally. So uh how was that, Tani? Did that describe the beginning pretty well?

SPEAKER_00 12:43

Yes, perfectly.

Awareness Efforts And Events

36 Hours In DC Overview

SPEAKER_01 12:45

All right, so I thought what I'd do is give you some examples of some of the things that we've done under each of those categories and what we're thinking about in the future. Awareness. We continue to focus on awareness because remarkably, not all doctors know about pandas and pans, much less are educated about it, and certainly the average person is not. And this is still a disorder that is at the stage where it's the individual or the parents' responsibility, unfortunately, to make sure that they are aware of a variety of disorders, but certainly pandas and pans. I grew up with a trust in the doctors and other practitioners that I saw that when I came in with certain symptoms, that they would be able to identify what I have. They might start off by saying, Whoa, I don't know what you have, but I'm going to get to the bottom of it, curiosity. But the fact remains that not everybody is aware. So what do we do? Well, we have an active social media presence. We have an Instagram account, the Alex Manfo Fund. We have a Facebook account, the Alex Manfo Fund, and we also have an account on LinkedIn, both under my name, Susan Newman Manfo, and the Alex Manfo Fund. We urge you to follow us so that you learn more about these disorders and also you know what it is that we're doing. We also have our podcast, Untangling Pandas and Pans, which of course you're listening to right now. We are entering our third year with this podcast, and it's really been terrific. We've been able to attract some outstanding individuals, researchers, and practitioners, and a few people who've been identified as having pandas and pans. I encourage you to go back and listen to all of the interviews. I think that you'll find them valuable. We also have some events that increase awareness. Probably our biggest one is called 36 Hours in DC. And that consists of a dinner, a highly anticipated event. This would be our fourth dinner, and we have upwards of at least 100 people, and this year we may have even more. We always have interesting speakers. Last year we had uh Dr. Juliette Madan, who talked about a paradigm shift taking place in psychiatry. She is a psychiatrist, a pediatrician, an epidemiologist at Dartmouth at their clinic called the Neuroimmune Psychiatric Disorders Program. Great talk. We also had uh Warace Bokari, who is a co-founder of Claimable, which is an app that has been very successful in helping families and individuals who've had their insurance requests denied, and he helps them overturn those. And then we also had a parent, Karen Sarukin, talk, and she talked about the death of her daughter, Emma. We have also the 5K. The 5K takes place on Saturday, the next day, and this year it's going to be in Alexandria, Virginia. It's going, we're going to be running or walking, whatever your preference is, through urban areas and more outdoorsy areas as I as I understand it. I haven't seen the course yet, but I know that the people who live in that area are very excited about this particular course. The National Alliance of Pandas Pans Action organizes advocacy work taking place with senators and congresspersons, and we tell them about pandas and pans. And then last year, for the first time, we had a researchers' brunch, researchers working brunch, in which about 20 researchers andor practitioners got together to discuss their own research. And also Juliet Madin and Jennifer Frankovich from Stanford led us through an exercise to identify, to help to identify and establish criteria for the classification of PANS. It was an event that should have been two hours, but it ended up being four hours, and we had to really boot people out for the next event. It was very exciting. Our organization really emphasizes dialogue. We have a saying, dialogue saves lives. And we think by bringing people together, doctors and practitioners from multiple disciplines, and allowing them to talk in person, we can really begin to advance research because partnerships are developed by doing that, and um, and understanding of pandas and pans. So put that on the calendar. Again, the dates of the dinner is June 12th, and the 5K is June 13th. Napa will be sending out information about their advocacy work, and I think that that is on the 11th and the 12th. So that's an example of some of the awareness work. We have a new event that debuted in Hermosa Beach, California, and it debuted this past October. It is called Tilt, Stories on the Edge. And this is the brainchild of one of our board members, Sherry Strollsson. It was really great. Nine, ten people went up on stage and had five minutes to tell their story. And it had to be about being on the edge. That was the theme for uh this past tilt. And I think it will be the theme on the upcoming ones too. But they had to tell a story. So there were many people who talked about uh living with pandas uh or pans, discovering that they had it, trying to determine what to do. They were certainly on the edge. But it's not limited to pandas and pans, and it's not limited to difficult situations in which you find yourself on the edge. It could also be positive, positive situations in which you're trying to decide, I don't know, which job to take or which university to attend. It was such a success, it was sold out. Everybody raved about it. So Sherry and her co-producer, Noreen Raja Halpern, are organizing another one, and it's in Berkeley, California, on Thursday, February 12th. Tickets will go on sale on January 12th, but you could check on the Tilt Facebook site to follow along to confirm when the tickets will be available and to learn more about that particular event. And we're also considering Charlotte, North Carolina, New York City, and up near the Dartmouth area in Lebanon or Hanover. This is very much an awareness event. It's a storytelling event, and it really captured the hearts of people who have been able to attend it. We also had an awareness day this year in Portsmouth, New Hampshire, where I think you know that we're centered. The city lights up the main bridge from Portsmouth to Kittery, Maine, lights it up in green. This year we had some speakers beforehand, and then we all gather to walk across the bridge with various forms of green that we are wearing or carrying. And to draw attention to pandas and pans. And this year we drew attention to one of the local television stations, Channel 9, in Manchester, New Hampshire, and they uh they interviewed us. So that was huge in terms of awareness. Following that, there's uh the Vermont Pandas Pans Network puts on a 5K race, which we uh attend and we have also supported. And prior to that, let me say that the Look Foundation in Boston just had their second huge walk for Awareness Day in October. Well, let me just mention one other thing. We um support the International Brain Bee. Most people have never heard of the International Brain Bee, but they have been around, I think they're in their 27th year. And what they do is to support high school students who are interested in neuroscience. It's kind of like a spelling bee. So that you start out locally, and if you win there, you move to a regional contest. And then eventually there is a global competition and five or six, I can't remember how many students were chosen this year, maybe even seven, uh, outstanding students who are dedicated to learning more about neuroscience. They're very, very curious, and they also have a lot of fun doing it. I've been fortunate to give a couple of talks to this group, and we're uh we support this group because we believe in raising awareness even at very young ages. So we're very excited about that particular group. Towney, what do you want to say?

SPEAKER_00 23:29

About the incredible brain bee individuals, they're also very curious and bright young people that we hope will take an interest in this topic as they move through their education.

Tilt Storytelling And Local Outreach

SPEAKER_01 23:44

Absolutely. They've been really fun to get to know. So that's awareness. And I know I can tell you that so many more people are aware of this disorder since 2018 when Alex died. All right, education is another key pillar, and probably the most important part of education is our symposium that takes place every other year. It is slated to take place November 13th and 14th this year, 2026, again in Portsmouth, New Hampshire. Our target audience is twofold. Doctors who are not familiar with pandas or PANS or other neuroimmune disorders to help them recognize these disorders. And the second uh purpose for this symposium is to invite researchers to talk about their current research. And as I said earlier, we've been very fortunate that researchers who have never met one another have done so at our symposium and are working together now, applying for NIH grants, for example. And just in general, talking about what their research is, particularly when it overlaps with the research that other professionals are doing. I mentioned the researcher working brunches. We're very proud of those, and they've been very successful. At the symposium, we will have our third researcher brunch. And other things that we do, uh, members of our board, including myself, uh, talk at conferences. Uh Sheila Gouch is one of our board members who's spoken quite a bit at uh at conferences, especially working with people in the mental health field to help them recognize the symptoms of pandas and pans. Tony, is there anything else I should say about education?

SPEAKER_00 26:00

I would say we're very proud that the researchers that attend our symposium come from around the world, and they're really the best and brightest working in this space from all continents.

Education Strategy And Symposium

Why Research Must Accelerate

Proteomics Biomarker Findings

IL‑17/IL‑23 Pathway And OCD Links

SPEAKER_01 26:14

Well, maybe not all continents, uh, but we'll aspire to that. All right, research. People have asked us why are we really emphasizing research this year? Uh we did this past year as well, but we're really putting a much greater emphasis on it this year. I think what I'm gonna do is talk about some work. Actually, it's kind of a story. And the setting is in Vienna in the mid-1800s, and the central character is Dr. Semmelweiss, a resident at a hospital in Vienna that served women who did not have the means to go anyplace else to give birth to their their children. There were two divisions of this particular maternity ward. There were two clinics. One was staffed by medical students, and the other one was staffed by midwives. And what Dr. Semmelweiss realized when he started working there is that the mortality rate was 10% in one ward, and that was the one in which the medical students were working. And it was upwards of 2% in the ward where the midwives were working. Now this was widely known. In fact, it was so widely known that mothers would go on their way to the hospital, but before they got there, they would give birth outside the hospital because they knew that if the umbilical cord indicated that the baby had just been born, that they will still serve the mom and the baby. They didn't want to risk dying in the hospital. So when Dr. Semmelweiss was assigned to the maternity wards, and he understood that there was such a stark difference between the mortality rate in the two clinics. This 28-year-old man, future doctor, wondered why this was. He considered the fact that it was men delivering the babies in one clinic, and maybe the women were shy and died on account of that. And however ridiculous that sounded, Dr. Simove considered this possibility, but clearly the babies were dying as well, and they wouldn't know the difference as to who was delivering them. He considered ventilation. Did one of the clinics have poor ventilation and the other didn't? He considered that some of the residents were immigrants, and were they rougher than the Austrian medical students? He considered all sorts of things until he made a startling connection. When a close friend and colleague died after a medical student inadvertently nicked his friend's finger with a tool that had been used in the autopsies, and he appeared to suffer from the same complications as the mothers and infants who died from childbed fever, which was what it was called. So Semmelweiss realized that the medical students were coming from the morgue after doing autopsies and then delivering babies. The midwives, not surprisingly, were not. Clearly, washing your hands made a difference. He went on to do other research that supported hand washing, and he wrote a book on the subject, but the book was not well received at all. In fact, he suffered from uh humiliation when he gave a presentation on the subject. Why he had research that supported the importance of hand washing, he had data that supported that view. But he didn't have research that explained why that was the case. That research would have to wait, or that understanding would have to wait until Louis Pasteur and Joseph Lister came around and put forth the scientific explanation for why hand washing was so effective. That was in the late 1860s. And finally, then physicians accepted the uh advice that Simulatz had given years earlier. Unfortunately, uh Simmelweiss died in 1865, so he did not get to see the final acceptance of his views. And even worse, he died in an insane asylum. And it's believed that he was involuntarily hospitalized for his crazy views by his colleagues. And it seems that he died of generalized sepsis due to a severe beating by his hospital attendants. The research of Louis Pasteur and Joseph Lister, they were able to explain what happened and they got physicians to change their behavior. But that took a long time. And that is still the case today, that it takes a long time for the findings at the bench, as it's called, to move to the bedside. 17 years is usually the amount of time that it takes. And I know I, my husband, and our board, and I think anybody in this field believe that that's unacceptable. We've got to get information to the bedside before 17 years has passed. Oh my goodness. So, um, how do you do that? You do that by supporting research to explain the role of infection and the immune system in enabling the blood-brain barrier to become more permeable and enabling autoantibodies to cross, at least that's the theory now, to cross and impact the basal ganglia and cause the symptoms that we see and know as pandas and pans. So we support a lot of research. Long story to tell you why. Some research that we're particularly proud of has recently been wrapped up by Dr. Lauren Breithop, who is a neuropsychologist at MassGeneral slash Harvard. What she did was to use proteomics to look at proteins in individuals who have pandas and in healthy controls. She also looked at individuals with OCD and RFID proteins. They regulate immune signaling, uh, inflammation, and communication between the body and the brain. But unlike genes, which indicate long-term risk, proteins reflect what is happening right now. So this makes them ideal biomarkers. And in her first study that we supported last year revealed a clear differentiation between the SERA from pandas versus healthy controls with 91% accuracy. So that um with that research in mind, she's now working with Dr. Jenny Frankovich at Stanford. And this is research that the Louisa Adeline Johnson Fund for Complex Disease has also contributed significantly too. So the goal is to replicate and extend the original findings, research that will continue through 2026. We also supported research that Kyle Williams is doing. He is also at Mass General, Harvard, and he's investigating the link between psychiatric disorders and autoimmunity, specifically how OCD and IL-17 and IL-23 based autoimmune conditions are associated. IL-17 and IL-23, which are two key cytokines in the immune system that you've probably heard of before if you read this research at all. IL23 stimulates TH17 cells, which in turn produce IL-17 cytokines. This is referred to as the IL23 slash IL17 pathway. And that leads to inflammation, which in some individuals can lead to psoriasis and psoriatic arthritis. Drugs that inhibit IL-17 or IL-23 can treat psoriasis and psoriatic arthritis. So consider a few things here that are really interesting. Alex developed psoriasis right after her strep and mono infection and the manifestation of symptoms which indicated pandas was present. She had no history at all with psoriasis and no family history. She was treated with Humera, a biologic that inhibits another inflammatory producing protein TNF alpha, and later cosentics, which is an IL-17 inhibitor. And that was very effective in treating Alex's psoriasis. Okay, also consider that Dr. Draton Aguilou's research, highly regarded, and he uses mice, has homed in on the role of IL-17 in making the blood brain barrier more permeable, enabling autoantibodies to cross the blood brain barrier and enter the brain. And that when IL-17 is inhibited, IL-17 cannot make the blood brain barrier more permeable. Thus, autoantibodies cannot cross the blood brain barrier and affect the brain. Also consider that Dr. Jenny Frankovich has observed that PANS patients are at higher risk for arthritis. And finally, consider that Kyle learned of a case in which a 50-year-old or 50-year-old man who had intractable OCD, psoriasis, and later psoriatic arthritis was prescribed cosentics to treat the psoriasis and arthritis. And it turned out that it was not only effective in treating the psoriasis and arthritis, but also the OCD. So Dr. Williams' research hopes to begin to tease out the role of autoimmunity focusing. On IL-17 and IL23, and psychiatric disease focusing on OCD and PANDAS PANS. His research continues through 2026. New research in 2026. Well, we are talking with Dr. Agilou about a new study that will look at the interaction of PANS and Lyme disease at the blood-brain barrier. I hesitate to provide any more detail because the details of this work haven't been fully determined, but it is definitely exciting to be bringing Lyme disease into PANDA's research. And we're talking to other researchers about what's lurking in those tonsils and adenoids, for example, and some other research having to do with the microbiome. And some new research by someone new to the field at Yale, we're very interested in. Finally, even our scientific and medical advisory board has been in discussion about some work that they can do. And the most recent conversations that I've heard also have to do with IL-17. So that's what we've been doing as far as our pillars go. We did a lot of advocacy work too. We wrote a detailed response to a report released by the American Academy of Pediatrics, first in December 2024 online, and then in March 2025 in print. In our letter, we had 15 signatures from executive directors and presidents of Pandus Pans related groups from the United States and other countries around the globe. It was a total of 29 countries were represented. There are truthfully a shocking number of serious problems in this report. I'm holding our response, which is bound, and it's a half inch thick. It includes our letter and the uh the references that we provided. I'm looking at what we and so many other people around the world objected to. Let me read you just a little bit. Although the report acknowledges PANS as quote unquote likely a valid diagnosis, it also casts doubt on its legitimacy, undermining decades of research and clinical experience. It fails to incorporate key scientific literature published between 2018 and 2025. It omits critical studies and expert opinion. It disregards established clinical guidelines. It also lacks transparency regarding authorships and the conflicts of interest of those authors. It misrepresents diagnostic standards by denying essential medical rule outs and dismissing well-supported diagnostic tests and treatments. Very alarmingly, insurers already are citing this flawed report to deny necessary care. And as a result of that, vulnerable children and young adults are put at serious risk. That is why we wrote our letter. It is on our website if you'd like to read the full version. But that was something very important that we did in um 2025, published in July, uh written rather in July, July 31st, 2025. And finally, there's some exciting news that I will announce. And finally, there's some exciting news that I would like to announce. In July 2025, the Senate Appropriations Defense Subcommittee advanced the Defense Appropriations Bill and directed that pandas and PANS be included in the Department of Defense's peer-reviewed medical research program, otherwise known as PRMRP. What this means in simple language is that the Defense Department will provide funding for research in pandas and pans as relevant to the military personnel. It was NAPA who spearheaded this initiative, but I also want to give a shout out to our board president, Daniela Zosa-Sarkar, and her husband Sonny, and our former board member, Brandy Dean. Sonny previously served in the Air Force, and Brandy Dean previously served in the Coast Guard. They did the work to raise awareness about this initiative that included Pandas and Pants. There is so much more I could share with you. But so that I don't overwhelm you, I'll sum up by saying that we are very proud of what we have accomplished in four years. We have a great board, great volunteers, and an exceptional scientific and medical advisory board.

SPEAKER_00 46:06

Well, I believe we've made great progress in 2025, but I'd like to hear from you what made you feel like, yes, this is why we do this. Was there something specific last year that reinforced that we're on the right track?

SPEAKER_01 46:26

Oh, that's a hard one. I guess what comes to mind is Laura Breithop's work in which she has identified protein profiles that appear to be a biomarker, actually. And that's what we need in this field. She actually has filed the paperwork for a patent. Well, I think we'll reduce some of the skepticism in this field that continues today, and I think that it will enable diagnosis to occur much more quickly. And the work that she and Dr. Frankovich are doing will further illuminate what's going on with pandas, PANS, OCD, RFID, and being in a flare state versus not being in a flare state. So this research is extremely exciting. I also have to mention Dartmouth's Neuroimmune Psychiatric Disorder Clinic. Doctors Juliet Madin and Richard Morse are doing really incredibly exciting work, cutting-edge work, as reflected in their care for children, adolescents, and young adults with complex neurological and psychiatric disorders, disorders that follow an infection or association with an immune disorder. And this is also reflected in their research as well. As I mentioned earlier, Dr. Madan, she believes that we are in the midst of a paradigm shift in psychiatry. And as a result, they look for evidence of infection or something that's gone awry in the immune system when a patient presents with psychiatric symptoms. They do a medical rollout first. The Diagnostic and Statistical Manual, the fifth version that we are using now, requires that there is a medical rule out when someone presents with psychiatric symptoms, but it's not done routinely. And there has been quite a few articles in the laypersons press. I'm thinking of a New Yorker article over the summer about a woman by the name of Mary, who actually had been a doctor, and she was diagnosed with schizophrenia and remained diagnosed with schizophrenia for 20 years until she was diagnosed with lymphoma and she was given an immune-modulating drug called rituximab. And as if by magic, her symptoms disappeared, and now she no longer has schizophrenia. So had they tested for an infection or for something going on in the immune system, she would not have lost 20 years of her life. And a couple more things about Dartmouth. One, they provide inpatient services for children, young adults, and adults in psychiatry. Very unusual in this country to have such services. So in some, we are very proud to provide fellowship funds to the Dartmouth Neuroimmune Psychiatric Disorder Clinic. We committed to three years of such funding. All right, is there anything else? I have to mention that I'm really excited about all the young people who are interested in raising awareness about pandas and pans. And we just added two young, by comparison, women to our board. Kayla Caulfield and Jaden O'Brien are members of our board, and one of their chief jobs will be to raise awareness in younger individuals. And I think it's worth mentioning that the Alex Manfell Fund, from our inception, was interested in particular in pandas and pans in young adults. And we were unique at the time in doing that.

New Studies: Lyme, Tonsils, Microbiome

SPEAKER_00 51:02

And to elaborate, both Jaden and Kayla have a personal history with pandas and have gone on to accomplish so much. And I think their story is one of courage and accomplishment that gives hope to everybody at any age.

SPEAKER_01 51:22

Absolutely. And right now, Kayla, who is an actress, and she was in Coda, and she's in the Gilded Age. Well, Jayden right now is competing for a spot on the US Olympics bobsled team right this very moment. And they are survivors. But I heard somebody use the word thrivers to describe individuals like Kayla and Jayden, and I do think that's what they are.

SPEAKER_00 51:55

You mentioned research as being a major accomplishment for the fund this past year. And with the public funding for research being cut continually, why are private foundations like ours more critical than ever right now?

SPEAKER_01 52:15

Well, because the National Institutes of Health severely caught funding without any advance notice. In fact, some people who were in the middle of clinical trials or in the middle of work with animals had to stop their work because it lost funding. And we uh contributed to two researchers who were severely impacted by this. One was Dr. Jatan Aguilu's postdoc, and that's Urs Akschan, who just lost his funding, no more funding, just like that. So the advocacy groups got together and contributed funds to allow him to continue that work. And the same, something very similar happened with Dr. Madeline Cunningham's lab, and and we contributed, as did other advocacy groups, to the funding of research by Chandra Menendez. And I'm hearing more and more that researchers are really dependent on small organizations like ours. We can't fund clinical trials and other large-scale studies, but we can provide the seed funding for that research. And when NIH begins to fund this type of research again, these researchers who received seed funding will be in good shape to move forward with the application. It's a very sad situation.

SPEAKER_00 53:59

So obviously, research has a much larger price tag than awareness and education. How has that changed how the Alex Manful Fund is looking at uh 2026?

Advocacy Response To AAP Report

SPEAKER_01 54:15

Well, it has motivated all of us to really talk to donors about how important it is to uh contribute to the funding of research. I can't think of a better place to put your money. This it costs money to do this research, and we've been fortunate to have many generous donors, and I'm confident that they will stay with us, and I hope they tell their friends and family that we are an organization that they should consider making a gift to. If you are so inclined to make a gift, you can go to www.the alexmanfulfund.org, scroll way down and find the link to where you can make a donation. We would be grateful. I know that the families who are affected by this and the individuals who are affected by this would be very grateful. And I'd like to add that this is exactly what Alex wanted to do when she was first diagnosed by Dr. Beth Latimer and was set to begin treatment with ratoximad, but unfortunately got sick as a result of complications from pandas. She engaged in behaviors that took her life. I don't want that to happen to anyone else, or as I mentioned, the years lost that it can take to find a diagnosis.

SPEAKER_00 56:10

So when you look ahead, uh what gives you the most hope?

SPEAKER_01 56:17

Well, let's see. Sue Suido came out with her paper, her seminal paper about pandas in 1998. If you figured that it takes 17 years from bench to bed, we passed that in 2015. That's when the PANS Research Consortium that had just met in 2013 released their consensus statement in a special issue of the Journal of Child and Adolescent Psychopharmacology, along with three other articles that still serve as guidance for the field. Those articles were diagnostic criteria and evaluation, clinical evaluation, and treatment guidelines, all in 2015. And if we have to wait another 17 years, it's going to be 2032. That is way too long. And many of these experts in the area are looking toward retirement. Some have already indicated that they are going to retire soon. So as I look out there, what's extremely exciting is to see all the young people who are interested in this subject and would like to make a difference. So I'm hopeful that we will have many more people working in this area.

Disclaimer And Closing

SPEAKER_00 57:44

We've got to.org. The content in this podcast is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.