BY THE ALEX MANFULL FUND TEAM

Dear TAMF Friend,

Welcome to the first quarterly publication of TAMF Newsletter. We hope it will inform you, inspire you, embrace you, and provide you the tools to help us move mountains. 

The Alex Manfull Fund has had a busy spring. Nearly the full TAMF board traveled to Washington, DC to spend "36 hours in DC." It began with a "get-acquainted" event on Thursday, April 11. On Friday, close to 100 people from across the country and the Netherlands visited the offices of 15 different legislators informing them about PANDAS and PANS and letting them know about an upcoming appropriations request from National Alliance for PANS/PANDAS Action (NAPPA) for $5,000,000 from NIH to fund research. The New Hampshire team met with legislative aides in the offices of Representative Chris Pappas, Senator Jeanne Shaheen, and Senator Maggie Hassan. I also had the pleasure of meeting with Senator Hassan directly. What a truly meaningful experience for all participants!

We hosted a dinner to applaud the work of our researchers, clinicians, key advocates, and major donors. Speakers included Dr. Lauren Breithaupt, Dr. Kyle Williams, and young advocate Sara Ravenel. I had the privilege of interviewing Meghan O’Rourke, New York Times Best Selling Author of “Invisible Kingdom.” (In homage to daughter Alex’s keen sense of humor – and because we learned Meghan O’Rourke shared Alex’s fondness for a particular comedian, Zach Galifianakis, and his interviews – we rolled in two ferns between which our conversation took place.) There was a palpable feeling of hope in the air.

Our 5K Run/Walk on Saturday at Hains Point was a huge success! Thank you to Kayla Caulfield, actress and young advocate, who sang a rousing National Anthem; Ethan Pompeo who shared his inspirational story of surviving PANS; and the amazing Rhythmay Dancers (who got us all up and dancing). By the way, all you virtual runners/walkers, please send in your photos of you in action!)

DRUM ROLL -- We raised over $101,000! Through the generosity of our Gold sponsors -- Kabafusion and Soleo Health Program -- and our Silver Sponsors -- Dalya Partners and Georgetown University Department of Neurology -- and our wonderful donors, we met our goal! Hats off to chairperson Marina Selenica as well as Daniela Sosa-Sarkar, Paul Murphy, and Angie Gentile and all the other many behind-the-scene volunteers!

A few days later, I joined April Ronay, Shari Strulson, and Angela Tang, MD – the core of California PANS/PANDAS Coalition – in Sacramento, California to testify at the State House before the Assembly Health Committee in support of AB2105, the bill put forth by Assembly Member Josh Lowenthal to ensure insurance coverage of doctor-prescribed treatments for PANS/PANDAS. They unanimously (14-0) moved the bill to the Assembly Appropriations Committee who, on May 1, moved AB2105 to the Appropriations Suspense File (as expected). It was an incredibly moving experience to be a part of this important process in my home state. Your letters of support are still needed! Please follow CalCoalition for PANS/PANDAS on Facebook to learn more. Save Wednesdays in June for the anticipated PANDAS/PANS Advocacy Day in Sacramento.

ANOTHER DRUM ROLL -- TAMF voted to support a three-year fellowship fund at Dartmouth Hitchcock Medical Center -- The Alex Manfull Neuroimmune Psychiatry Program Fund --, and a five-year fellowship fund at Georgetown University Medical Center --The Alex Manfull PANDAS/PANS Fellowship Fund. TAMF is dedicated to filling the proverbial pipeline with PANDAS/PANS knowledgeable physicians and researchers.

Finally, we are thrilled to tell you that have launched a podcast! Called “Untangling PANDAS & PANS,” we have two episodes posted (and two bonus segments). Our next guest is Dr. Shannon Delaney, a New York City-based psychiatrist who has expertise in Lyme and other tick-borne diseases and their relation to PANS. Episode 3 ,"What Do Tick-Borne Illnesses Have to Do with PANS?," will be released on May 26, the last Sunday in May.

References:

1998

Swedo, S. E., Leonard, H. L., Garvey, M., Mittleman, B., Allen, A. J., Perlmutter, S., … Lougee, L. (1998). Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases. American Journal of Psychiatry, 155(2), 264–271. https://doi.org/10.1176/ajp.155.2.264

19.5

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787

Stanford Medicine. Obsessive-Compulsive and Related Disorders. https://med.stanford.edu/ocd/about.html

Geller DA, Homayoun S, Johnson G. Developmental Considerations in Obsessive Compulsive Disorder: Comparing Pediatric and Adult-Onset Cases. Front Psychiatry. 2021 Jun 14;12:678538. doi: 10.3389/fpsyt.2021.678538. PMID: 34248714; PMCID: PMC8269156. https://pubmed.ncbi.nlm.nih.gov/34248714/

The TAMF Podcast, "Untangling PANDAS & PANS,” already has two episodes posted (and two bonus segments) for immediate listening and a third episode in the works for May 26th.

Season 1, Episode 1 (April 6, 2024): The Immunological Basis of Eating Disorders and PANDAS/PANS with Lauren Breihaupt, PhD, Assistant Professor of Psychiatry, based in the Eating Disorders Clinical and Research Program at Massachusetts General Hospital

Season 1, Episode 2 (April 28, 2024): The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: A Conversation with Kyle Williams, MD, PhD and Andrew. Dr. Kyle Williams is the Director of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital.

Season 1, Episode 3 (May 26, 2024): Later this month, we will be posting an interview Shannon Delaney, MD, a private practitioner who recently started a practice in Manhattan, specializing in complex neuropsychiatric presentations related to tickborne illness in kids and adults. We will be talking about Lyme as a trigger for PANS.

Click here for more details and to listen to the TAMF Podcast

Alexithymia refers to a difficulty experiencing and identifying emotions. With its roots in ancient Greek, ‘a’ refers to lacking; ‘lexis’ means word; and ‘thymos’ means emotion. Thus, the word literally means “having no words for emotions.” It occurs across the age span and with varying degrees of severity. The prevalence of alexithymia is estimated to be about 10% of the general population.

Alexithymia is observed in some patients with autism, substance abuse disorders, certain physical disorders, autoimmune disorders, sexual disorders, schizophrenia, depression, anxiety disorders, and obsessive-compulsive disorders. It may be associated with suicide ideation and dysregulated immunity.

Studies suggest there may be two components to alexithymia: a cognitive dimension in which difficulties involve identifying, understanding, and expressing feelings and an affective dimension in which the challenges center on experiencing one’s emotions. As a result, one may observe a person with alexithymia as being oblivious to cues and appearing to have flat reactions.

Historically, the concept was tied to psychoanalysis and psychosomatic medicine; the idea that unexpressed emotions can manifest in physical symptoms has been around since the 19th century, but it lacked a specific name. In the 1970s, two psychiatrists at Harvard Medical School (one born in Greece, interestingly) coined the term “alexithymia” for this deficit in emotional awareness and expression. In the past decade, the concept has moved from the clinical arena to research labs.

References:

Abd-Elhamed, M.M.E., Hady, R.F.A., Mahmoud, S.F. et al. Alexithymia, resilience and suicidal ideation among patients with obsessive–compulsive disorder. Middle East Curr Psychiatry 30, 86 (2023). https://doi.org/10.1186/s43045-023-00355-9.

Bruni R, Serino FM, Galluzzo S, Coppolino G, Cacciapaglia F, Vadacca M, Nilo S, Terminio N, Afeltra A. Alexithymia and neuroendocrine-immune response in patients with autoimmune diseases: preliminary results on relationship between alexithymic construct and TNF-alpha levels. Ann N Y Acad Sci. 2006 Jun;1069:208-11. doi: 10.1196/annals.1351.018. PMID: 16855147.

De Berardis D, Serroni N, Marini S, et al. Alexithymia, suicidal ideation, and serum lipid levels among drug-naïve outpatients with obsessive-compulsive disorder. Braz J Psychiatry. 2014; 36 (2): 125-130.

Guilbaud O, Corcos Mm Hjalmarsson L Loas G, Jeammet P. Is there a psychoneuroimmunological pathway between alexithymia and immunity? Immune and physiological correlates of alexithymia. Biomed Pharmacother. 2003; 57 (7); 292-295.

López-Muñoz F, Pérez-Fernández F. A History of the Alexithymia Concept and Its Explanatory Models: An Epistemological Perspective. Front Psychiatry. 2020 Jan 31;10:1026. doi: 10.3389/fpsyt.2019.01026. PMID: 32082200; PMCID: PMC7005782.

Sifneos PE. The prevalence of 'alexithymic' characteristics in psychosomatic patients. Psychother Psychosom. 1973;22(2):255-62. doi: 10.1159/000286529. PMID: 4770536.

Wang X, Li X, Guo C, Hu Y, Xia L, Geng F, Sun F, Chen C, Wang J, Wen X, Luo X, Liu H. Prevalence and Correlates of Alexithymia and Its Relationship With Life Events in Chinese Adolescents With Depression During the COVID-19 Pandemic. Front Psychiatry. 2021 Nov 22;12:774952. doi: 10.3389/fpsyt.2021.774952. PMID: 34880795; PMCID: PMC8645693.

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