Impact Report

June 2020 – May 2021

Thank you!

Dear Supporters,

When I think of the pain I’ve watched countless families endure over the years that led me to found Neuro­immune in the first place, and think of the faces of the beautiful, burdened children and young adults that have graced my inbox, and the desperate pleas from parents, I feel great sadness for what our community has collectively endured, but also tremendous hope for the future given what we‘ve been able to accomplish together in the past three years.

The exponential growth in medical clinicians attending our educational events on PANS/PANDAS has exceeded our expectations and hopes. We know that for each clinician who becomes educated on PANS/PANDAS, dozens of patients‘ lives will be positively impacted. Our ability to offer and market these programs is due entirely to the support from our community. We have made great strides in the past year that would not have been possible without the outpouring of support we’ve received from you.

Well over 1200 medical clinicians alone registered for this conference. Stanford, UCSF, Columbia, and Yale accounted for the majority of our speakers. AAP Chapters, Medical Societies, and medical colleges in multiple states have endorsed and shared the conference and our CME. Not once in planning, marketing, or engaging­ anyone did I hear the word “controversial.” In fact, I did not hear anything but resounding affirmation that this information is not only worthy of being shared, but that physicians are truly excited to have the opportunity to become educated on these topics.

Gratitude is owed to many – from the very first advocates of PANS/PANDAS who laid the earliest groundwork, to the researchers and clinicians who faced criticism for daring to think outside of the box, to the parents wrecked with exhaustion who still took the time to reach out to their clinicians and share our educational events, to our biggest donors who have made much of our work possible, and to our littlest donors who have given what they were able to despite being stretched so thin. There is much more work yet to be done, but there is light at the end of this tunnel. To each of you who have played a part in bringing all of our families a little closer to that light, thank you. You have made a tremendous difference and we appreciate you.

Anna Conkey
Executive Director and Founder
Neuroimmune Foundation

July 2021

Cover of the Impact Report, June 2020-May 2021 with a photo of smiling children and the Neuroimmune Foundation logo.

Survey Data

From medical clinicians who attended our continuing medical education and Q&A events in the past year

Via an email marketing campaign, we targeted 80,000 medical clinicians, offering them free access to our CME and Q&A events to support them in the diagnosis and treatment of patients with neuroimmune conditions including PANS/PANDAS.

To ensure that our educational activities are having the intended impact, we followed up with medical clinicians who had attended CME and Q&A events in order to find out the impact our programs had on their medical practices, and ultimately their patients. We are pleased to report that medical clinicians have found these programs highly valuable to their practices.

How important is ongoing support from Neuroimmune via Q&As and CME to your ability to effectively diagnose and/or treat patients with these conditions?

Pie chart showing results of 31.6% Critically important, 36.8% Very important, 31.6% Somewhat important, and 0% Not at all important

Has Neuroimmune’s CME or Q&A assisted in your treatment plan for one or more patients?

Pie chart showing results 94% Yes and 6% No

How valuable are our programs to enhancing your confidence diagnosing and treating PANS and other neuroimmune conditions?

Pie chart showing results of 64% Extremely valuable, 36% Valuable, and 0% Not at all valuable.

The Impact of Our Programs

June 2020 – May 2021

Impact of the

Inflammatory Brain Disorders Conference 2021

Thanks to the generosity of our community and sponsors, we were able to effectively market the Inflammatory Brain Disorders Conference to physicians and other medical clinicians around the United States free of charge. This led to an excellent turnout and was the single most attended PANS/PANDAS educational event in history!

The first day of the conference focused greatly on advances in research related to PANS and PANDAS and the second day highlighted the clinical aspects of diagnosis and treatment. Clinicians feedback through Continuing Medical Education evaluations was exceptionally positive and confirmed the event exceeded our educational objectives.

Inflammatory Brain Disorders Conference 2021

Comments from the medical clinicians

“Excellent and impressive conference!”
Dr. Shannon Delaney, MD
Neuropsychiatrist, Columbia University Irving Medical Center
Assistant Clinical Professor, Columbia University, New York

“Very informative. High quality excellent speakers. Perfect balance between science and clinical at this conference.”
Kiran Belani, MD
Pediatric Infectious Disease, Children’s Hospitals and Clinics of Minnesota
Assistant Clinical Professor, Pediatrics, University of Minnesota

“Historically, Sydenham’s chorea has provided a demonstration of the impact of post-infectious immune reactions on CNS function. This conference was an exciting update of scientific progress in dissecting the mechanism of these disorders.”
Nancy Kuntz, MD, FAAN
Attending Neurologist, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois Medical Director, Mazza Foundation Neuromuscular Disorders Program

“Excellent conference. I found the speakers to be very informative and knowledgeable about their various areas of expertise.”
Linda Doberstein, MD
Pediatric Director, Medical Psychiatric Program
Hasbro Children‘s Hospital, Rhode Island

“I found that the selection of speakers to be incredibly balanced. Not only was the growing ‘hot off the press’ basic science behind autoimmune brain disorders discussed and done so with the attention to detail that it so deserves, but tips for the general practitioner were given for those practitioners who are just getting their feet wet with diagnosing and treating patients with these conditions. The primary responsibility of all clinicians is to be able to recognize common historical patterns, observe physical findings, and come up with a treatment plan. This conference provided that insight. I cannot recommend this conference more highly.”
Karl Holtzer MD, MS, IFMCP
University of Pittsburgh Medical Center, Pennsylvania

“Thank you. It was a pleasure to learn from these experts.”
Vidya Raj, MD
Assistant Professor, Psychiatry
Vanderbilt University School of Medicine, Tennessee

“The conference was an eye opener for me. As a pediatric Neurologist in a busy hospital-based practice, I have always been uneasy about the patients with abrupt onset of mental illness or movement disorder. Now I heard at least some objective evidence about auto-immunity. I hope that the better testing became commercially available, so we do not need to treat empirically and fight with insurance companies.”
Tatyana Dubrovsky MD
Pediatric Neurologist, Joe Di Maggio Children‘s Hospital, Florida

“I was astounded by the amount of scientifically based data presented on encephalopathy, COVID and PANS/PANDAS at this conference. I thought all of the presenters at this conference did an excellent job explaining the pathophysiology involved in the various conditions that were highlighted in this conference.”
Urszula Kotlow, MD
Pediatric Psychiatrist, CPAE Clinic, Banner Desert Medical Center, Arizona

“I feel more confident as THE consultant on many of these cases due to expanded knowledge I have acquired via this resource. Excellent presentations with fantastic evidence-based information. I hope to be involved in more conferences. Thanks to all!”
Sandra Lawrence, MD, FACR
Pediatric Rheumatology, Florida

“The conference was excellent, including some cutting-edge research. I am very impressed.”
Dr. Lanping Yu, MD
Clinical Assistant Professor of Virginia Commonwealth University, Pediatrics, Virginia

“The neuroimmune conference transformed my thinking about the relationship between infection, neurobiology and psychiatric disorders. I learned so much.”
Melissa Aguirre, MD
Pediatrician, California

“This was an outstanding conference. I plan to attend annually, especially important since this is a very actively researched, rapidly evolving field. Clinical applications have profound life altering effects upon patients and their families, and we all owe it to them to be as current in our understanding and practices as possible. Thank you to all involved in putting this together. Well done! I am grateful.”
Deborah “Gaya“ Milling, MD
Psychiatrist, South Carolina

“This conference was very well done. Anna orchestrated an exceptionally high-powered group. This was as good as any conference I have ever attended including national and international professional meetings. Pierre, as always asked relevant questions and is the ultimate professional. Keep up the great work!”
R. Craig Platenberg, MD
Neuroradiologist, Virginia

“Speakers on day one were particularly compelling. Prior to attending the conference, I was intrigued by the notion of PANDAS/PANS, but mostly skeptical as to whether it was real. After the evidence presented on day 1 of the conference, I am convinced that this entity genuinely exists — and excited to get a number of patients connected for appropriate investigations and treatment.”
Dr. Michelle Snyderman, MD
Development and Behavioral Pediatrician, Wisconsin

“This is the most comprehensive, well-organized, and current information on all topics I have encountered in such a long time. I plan to attend every conference moving forward. Thank you for such well-presented information. Armed with several screenshots of slides, I have already contacted several patients to complete a more thorough history for a more complete treatment plan. So grateful.”
Maria Del Sol, MD
Child and Adolescent Psychiatrist, Florida

“This was a great symposium that all physicians/practitioners should be educated about, those topics are easily left less discussed among physicians, and the whole day it was an amazing gathering of brilliant people. Thank you!”
Gabriela Mihalache, MD
Pediatrician, Florida

“This conference had the highest scientific quality and rigor, and all the presenters and discussants were outstanding. The contribution of the foundation for children with neuroimmune disorders to society is incommensurable.”
Rosa Aurora Chavez, MD, PhD, FABP, Washington, DC

“This was a conference with fantastic collaborators and speakers. As a physician I felt that it was clinically oriented and cutting edge. It was incredibly useful to gain knowledge in a field like neuroimmunology where so little is known.”
Anuja Vyas, MD, FACOG, Texas

“As a clinical psychiatrist, it is crucial that I understand the potential origins of psychiatric symptoms. This conference gave insight into infectious and immune mechanisms for Neuropsychiatric symptoms that I found truly valuable. The speakers were of top quality.”
Matthew Bernstein, MD Psychiatrist, Massachusetts