June 2021 – May 2022
As we wrapped up our 2021 PANS Awareness events in which so many of you donated and fundraised, I came across an SOS email I had sent to my board in January 2019. This was the same month we hosted our first ever PANS/PANDAS CME event and less than a year after receiving our official IRS nonprofit status. It read, “So… this isn’t good. So far, we have only 31 registrants for the webinar.” We hosted four CME events in 2019 and struggled with attendance for all of them. Jessica Gavin and I had several conversations that year in which I complained (a lot) about how desperately we needed funding to reach physicians so they’d know these events were available. That October, something very unorthodox in the nonprofit world happened. Jessica spearheaded a campaign not for PRAI, the organization she founded, but for Neuroimmune, and many of you helped raise over $100k to begin outreach to tens of thousands of physicians. That was the beginning of Neuroimmune reaching thousands of medical clinicians so they could learn to help our families, and 31 medical clinicians turned into 2000 in under two years and over 4000 in under three years.
It’s easy to become cynical when so many doors have been slammed in our faces, but many of you, working together, have been drivers of major and meaningful change. When I stopped to reflect on that as I read and re-read “only 31 registrants,” I was incredibly proud of this community. I think people believe I have PANS figured out in my house—that maybe I don’t struggle like every other PANS parent, but I do, and our family does, in a very big way. This is why I am also tremendously grateful to each of you who have lessened the burden that all of our families carry. Everyone knows a PANS parent barely has the time to brush their own teeth, let alone revolutionize the medical community’s understanding of neuropsychiatric illnesses, but it’s happening thanks to many acts, great and small, from this community.
Nelson Mandela said, “It always seems impossible until it’s done,” and though it seems impossible, if 31 can become 2000, and 2000 can become 4000, then 4000 can become 24,000, and 24,000 can become 100,000. One excellent PANS clinic can become 100. A few PANS studies can become so much research that no physician, scientist, or insurance company can ignore it. I truly believe this community can move mountains together. I hope a few years from now, I’ll stumble upon this, and I hope I will read and re-read “4000” with the same incredulity I felt seeing “31.” And when that happens, you’ll be receiving a letter from me again, quoting a line from the Wizard of Oz: “We always had the power, my dears. We just had to learn it for ourselves.”
It really is an honor and privilege to do this work, and I’m so grateful to everyone who once again contributed to making this a reality. I hope the next time you hear the word “controversy” pertaining to neuroimmune disorders, it’s in the context of how ridiculous it was that it took so many years for understanding of how inflammation impacts the brain to be accepted and how wonderful it is that those days are in the past.
Thank you to each of you who brought hope and relief to families. Our work would be impossible without your kindness, dedication, and generosity.
Together, we are changing how the medical community views neuropsychiatric illnesses.
Executive Director and Founder
This was an amazing conference. The only thing better than the conference was seeing the expression of joy on the face of a parent when I told her what I learned at the conference and when she realized that her child might find relief through information from the conference.”
Sharon Packer, MD, Psychiatrist, Bearsville, NY
My son is flaring right now but amazingly, his new pediatrician just attended the Inflammatory Brain Disorders conference, so when I went in yesterday and said he had just started having vocal tics, food restriction, and change in behavior, she asked me what I wanted to do and what had helped in the past. She said it was important to treat as soon as we saw a need. She asked me if all illnesses triggered this response or just specific ones. She reminded me that it said in his chart that high dose NAC had helped him with tics before and called in antibiotics. It was amazing to be treated like this at my son’s pediatrician for the cost of our copay. I couldn’t believe I had this experience without any real effort on my part. I chose this practice because other families with kids with needs in the area love this practice, but I haven’t done any extra leg work. It was really such a wonderful experience. Plus, the delight of being touched by the amazing work of internet friends out in the wild. MAGIC.”
Parent of a child with PANS, JDV
Financial stewardship, integrity, and transparency are some of our most important core values as an organization. In March, Neuroimmune Foundation was granted Candid/Guidestar’s Nonprofit Platinum Seal of Transparency for the fourth consecutive year. This honor is held by under 1% of nonprofit organizations. At the time of publication of this impact report, Neuroimmune Foundation was the only PANS/PANDAS organization to be awarded this honor. We are also happy to announce that 100% of private donations in 2022 will go directly to funding our physician education programs, including the establishment of a fellowship program, as well as towards research. Full details of each year’s financials, including reviews, are linked on our website and Guidestar/Candid.
How funds were spent in 2021
(Total incoming: $426,486)
The value of your donation
On average, each $75 donation provided one physician with 22 units of accredited Continuing Medical Education, monthly opportunities to ask questions about PANS/PANDAS and specific patients to top experts in the field, 24/7 access to our Clinician Only Resource Library, and regular educational outreach on PANS/PANDAS. The impact of that education is reflected in the physician quotes and survey responses you’ll find throughout this report.
Clinician Impact Survey Results
All medical clinicians who had attended one or more CME or Q&A events in the prior 12 months were invited to participate in the following survey.
Conference Survey Results
All medical clinicians who had attended the 2022 Inflammatory Brain Disorders Conference were invited to participate in the following survey.
Did the Inﬂammatory Brain Disorders Conference increase your conﬁdence in your ability to diagnose and treat these conditions including PANS?
Has Neuroimmune’s CME or Q&A assisted in your treatment plan for one or more patients?
Was your perception of PANS/PANDAS changed as a result of the conference?
How valuable are our programs to enhancing your confidence diagnosing and treating PANS and other neuroimmune conditions?
Is access to ongoing CME on inﬂammatory brain conditions an important determinant in your conﬁdence level diagnosing and treating these conditions?
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?
As a result of the conference, did you reconsider or consider for the ﬁrst time that a patient might have an inﬂammatory brain condition?
Exciting news on the horizon!
Neuroimmune’s conference content to be published in a peer-reviewed medical journal Special Issue
We are elated to share that several different medical journals approached Neuroimmune Foundation requesting we partner to publish a peer-reviewed Special Issue in their medical journal based on our Inflammatory Brain Disorders Conference. We agreed and invited conference speakers to submit research papers, case studies, and reviews related to their presentations that will be peer-reviewed and then published in a special issue on inflammatory brain disorders, including PANS/PANDAS. We were advised that this is a great way to further physician education and create more visibility for these topics. Dr. Sam Pleasure, who is widely recognized as one of the top neuroimmunology experts in the world, offered to serve as the editor for the special issue and helped us select a very reputable journal with a good impact factor. Dr. Pleasure is the Glenn W. Johnson, Jr. Memorial Endowed Chair and Professor in the Department of Neurology at UCSF, one of the top medical schools and institutions in the world, as well as the Co-Director of The Center for Encephalitis and Meningitis at UCSF. To have his support in this effort is a great honor and privilege. We are also very fortunate that several speakers selected our Special Issue to publish their manuscripts. Because many of them are world-renowned in the field of neuroimmunology, they have many options for publication of their work, so we are grateful to them for their support in selecting our special issue for publication of their papers. Neuroimmune Foundation will cover costs so that all published articles will be accessible free of charge to physicians and the public. This dramatically increases the number of physicians who will read the special issue. We anticipate the peer review phase will take place late this fall with early 2023 publication. We plan to create a special journal issue based on the conference each year so that we can continue to widely circulate the latest information on neuroimmune disorders to physicians worldwide. We strongly believe that disseminating this critical information in highly regarded, peer-reviewed medical journals is a huge step forward in educating the medical community and shifting their perspectives on the origins of neuropsychiatric illnesses. Without the support of our community, we would not have had the opportunity to highlight the conference speakers and topics in this special issue, so we thank you.
Launching expert neuroimmunology panel for complex PANS patient cases
In August, we are launching a consultation panel comprised of several world-renowned physicians. Neuroimmunology experts from the fields of neurology, immunology, rheumatology, psychiatry, infectious disease, hematology, and genetics will be joining us. The panel will meet monthly to provide live case consultations to physicians treating patients suspected of having PANS, PANDAS, or related inflammatory brain disorders. This multidisciplinary team will provide consultations to the treating physicians of complex patients. The goal is to improve outcomes for the most complicated patients while educating the broader physician community.
Establishment of a the world’s first PANS Fellowship Program
We are thrilled to announce that we have partnered with the Stanford PANS Clinic to develop and fully fund a first-of-its-kind PANS fellowship program with planned collaborations at UCSF. We selected these institutions because of their forward-thinking approach to treating patients and their neuroimmunology expertise. Our goal is to equip brilliant, out-of-the-box thinkers to treat a broad spectrum of immune-mediated and inflammatory brain conditions, including PANS and PANDAS in individuals of all ages. A primary goal of Neuroimmune Foundation is to catalyze the pace at which physicians enter the field prepared to provide thoughtful, forward-thinking care to patients with neuroimmune conditions. We believe fellowships offer an excellent avenue for achieving this objective. Following the fellowship training, physicians will return to their home states to establish mainstream multidisciplinary clinics that accept
insurance at in-network rates. Since part of our mission is to support the discovery of new treatments that provide lasting remission for all patients, our priority is educating fellows who will open PANS clinics at academic institutions that have the capacity to engage in research. The first fellow will begin training in July 2023. We will fund one fellowship the first year, and as the program is refined and as fellows return to their home states around the country to establish clinics, new sites will be able to train additional fellows. Within the next five years, we anticipate funding several fellows at multiple academic sites each year. We intend to create one excellent clinic in each region and ultimately within each state. We have an ambitious goal of supporting the creation of 25 PANS clinics that treat children and adults within the next ten years, which we believe can be accomplished by preparing each new site to train additional fellows. We are excited to take the first step in what we expect will be a neuroimmune landscape-changing butterfly effect.
Inflammatory Brain Disorders Conference 2022
Comments from the medical clinicians
The Inflammatory Brain Disorders Conference 2022 was the most educational and effective conference I have ever attended in my 42 years as a physician! 23 lectures over the course of two days, major gems and pearls in every presentation. I sensed a cumulative tsunami paradigm shift for psychiatry is in the works, and that in our future, inflammatory brain disorders will be the rule, rather than the exception. My accolades to all the panel of experts who shared their latest research and efforts. Thank you!
Martin T. Jensen, MD, Adult, Adolescent, & Child Psychiatry, Laguna Niguel, CA
Hands down this conference is filled with more up to date and cutting edge information for understanding and helping patients with PANS/PANDAS and other neuroimmune/inflammatory conditions than is available anywhere else. I know these conditions are becoming more and more prevalent in our practices and attending this conference helps me tremendously to feel I am on the right track in treating my patients. Thank you once again for giving me access to superior speakers and leading edge researchers in this area.
Wendy Edwards, MD, Pediatrician, Ontario, Canada
Most comprehensive education for neurological disorders, ranging from sub-cellular level dysfunction and biochemistry to cutting-edge technologies and treatments. The information provided is indelible, and you will take home new knowledge. It’s a must-attend.
Kanwal Chaudry, MD, FAAP, Pediatrician, Stilwell, KS
This is the best conference I have ever attended. There was not a single speaker or topic that I was willing to miss, and I cannot wait for the next conference to see the evolution of the clinical and basic science research in neuroimmune disease. In my general Pediatrics practice in the last two years I have had several cases of autoimmune neurologic disease that were life-changing for the patient and mind altering for the physician. I am so happy to have the support of the Neuroimmune foundation as I help these patients navigate their lives.
Yvonne Brouard, MD, Pediatrician, Modesto, CA
When somebody enters a dark room if they switch on the light, then we can all see. That is what this conference has meant to many of us.
Jose Irazuzta, MD, Pediatric Critical Care, Jacksonville, FL
This was an exceptionally useful conference and the quality of the speakers was superb. I practice adult psychiatry. This conference will make me broaden my history taking to screen for symptoms of infections and autoimmune disease and make me consider these diagnoses more often.
Catherine May, MD, Pediatrics, Providence, RI
Excellent conference, learned a lot about a topic that I didn’t have much exposure to in my training. As luck would have it, immediately after the conference I saw a patient who demonstrated classic symptoms of PANS. Grateful for everything I have learned – I wouldn’t have been able to manage this case without it, and may not have understood what was going on prior to the talks. Will attend next year.
Naema Qureshi, MD, Psychiatrist, Slingerlands, NY
I am a developmental and behavioral pediatrician. I was so impressed by the scientific rigor of the research, the wide variety of speakers in many subspecialty areas from all over the world in last years conference that I decided to attend this year as well. I am very pleased to say that the talks were new and not a repeat of last year’s conference. They maintained the excellent standard of scientific research and offered new approaches and new technologies that had not been discussed last year. I do believe that attending these conferences has made a direct impact on my practice. I do feel ready to consider PANS, PANDAS in the differential diagnosis. I understand that recognition of inflammation is the first step to helping these families with the prolonged course of the disease. Thank you for ongoing scholarship in this field.
Victoria Crescenzi, MD, Developmental and Behavioral Pediatrics, Silverdale, WA
This is my second year attending this conference, and I intend to make it an annual event. Both times, this meeting has allowed me the opportunity to learn from brilliant, engaging presenters on the expanding clinical information and research findings relevant to providing care to patient populations that too often suffer as a result of delays in diagnosis and treatment. As a practicing psychiatrist, I have an obligation to be current on this topic. Thank you!
Deborah “Gaya” Milling, MD, Psychiatrist, Mount Pleasant, SC
I was aware of PANDAS but not as aware of PANS and this conference has really helped my understanding to diagnose and treat and refer cases. I found all of the talks finding relations to autoimmunity and environmental triggers fascinating and all the traditional psychiatric disease and potential underlying autoimmunity fascinating as well. I learned a lot.
Athena J Stoyas, MD, FAAP, Pediatrician, Colorado Springs, CO
Thank you for putting together such an excellent conference! It was even better than last year. I felt there was more direct clinical relevance, while still presenting advances in the basic science literature.
Kathleen Toups, MD, Psychiatrist, Walnut Creek, CA
This conference has been one of the best conferences I have ever attended in my academic and professional career. I am more confident of sharing this information with my colleagues, interns, and students.
Kristin Marie Clemens, DNP, PMHNP-BC, MSN, Gaithersburg, MD
The conference was an absolute success!
It provided an exceptional update on autoimmune diseases affecting the nervous system with a harmonic mixture of scientific and clinical contributions. Ample time for discussion was allowed. The faculty was outstanding. I do hope that this conference will occur yearly in the future.
Hrissanthi Ikonomidou, MD, PhD, Pediatric Neurologist, Madison, WI
This conference was very well run, and filled with very interesting topics. I am so glad that I attended because these are topics that are not discussed very often and they are very useful for everyday practice. I walked away with a greater knowledge on inflammatory brain disorders, and it will definitely impact how I evaluate and treat many psychiatric patients
Sarah McLaughlin, DO, Psychiatrist, State College, PA
Thank you also for being involved with this conference, which has for two years provided vital perspectives and research about important topics that have in the past been initially ignored and at times minimized or even ridiculed by some medical “experts”.
Mary De Luca, MD, Child, Adolescent, and Adult Psychiatry, Albuquerque, NM
Exciting conference that keeps you up to date on Neuroimmune diseases. As a psychiatrist I find it critical to stay informed on illnesses with neuropsychiatric symptoms. I highly recommend this conference.
Rebecca Jill Pate, MD, Psychiatrist, Murfreesboro, TN
Wow. I am a new grad and came across a FB post for this conference and I’m so glad I did! I was incredibly impressed. Very informative, so much data, and great presentations by knowledgeable clinicians! I need to rewatch the recordings because it was so much. Great job all around!
I can’t wait for next year.
Danielle Saner, DO, FAAP, Pediatrician, Papillion, NE
Wonderful conference. Huge thanks for the scholarship. This was the most educational CME activity I have participated in for years. Thank you to the sponsors!
C. Friedman, MD, Psychiatrist, Providence, RI
This was a fabulous conference. What a privilege to be able to hear from these world leaders in their respective fields. I will definitely be taking much of what I learned back to my job. Mahalo (thank you) very much for offering such a first-rate conference and a special mahalo to the sponsors that allowed for conference fee waivers. I am very grateful.
Sharon Tisza, MD, Psychiatrist, Honolulu, HI
I will be much better equipped to look out for various neuroinflammatory/neuroimmune disorders that cause psychiatric symptoms and include those as possibilities in the differential diagnosis in my evaluations as a child psychiatrist. Dr. Yolken’s talk about the neuropsychiatric effects of Covid was fascinating! I learned so much more about PANS/PANDAS, and other neuroimmune disorders. Dr. Irani’s talk was so informative! Especially loved the videos, and easy to understand presentation. This was my favorite talk. Thank you very much for a wonderful conference.
Hai Jin Kim, MD, Family Medicine, Annandale, VA
This was an excellent conference – thank you so much for bringing these impressive thought leaders together to advance the knowledge of this very important condition.
Dr. Teresa Birkmeier-Fredal, MD, Family and Integrative Medicine, Rochester Hills, MI
The conference was more than superb! Continuing to talk about things clinicians can do is extremely helpful! THANK YOU again to this great foundation and the parents who turned their tragedy into benefiting so many other children!
Zana Dobroshi, MD, PhD, General, Child and Adolescent Psychiatrist, New York, NY
Very informative conference. Relevant information provided for the Primary care Pediatrician. This conference will change work-up and management for my patients and I feel more confident in caring for these children. Thanks so much! It truly was wonderful!
Andrea M. Assantes, MD, FAAP, Pediatrician, Cutler Bay, FL
Thanks to this CME I feel better prepared to identify and treat inflammatory brain disorders, and I am very thankful for this education – thank you!
Dr. Joshua Green, Burlington, VT
LOVED LOVED LOVED this conference. I was amazed at the continued growth of this meeting year over year. I really enjoyed the inclusion of a wide variety of neuroimmune disorders such as MS, ME/CFS, NMDA, SLE, etc. Helps to think more mechanistically and to look for common themes which may guide treatment in the future (if only insurance companies would think that way too). This was a mind blowing conference, truly.
Angela Tang, MD, Internal Medicine, Rolling Hills Estates, CA
I really appreciate the cutting edge work and the open-minded and collegial atmosphere across disciplines and medical specialties. Very interesting and heartening. This is Medicine (and Medical Research) as it should be: humane, wholistic and solution – focused!
Rachel B. Vinkey, MD, Psychiatrist, Oakland, CA
Thank you so very much for putting together such an excellent series of speakers! There were so many helpful clinical pearls as well as fascinating research presented during the conference. I have so many more resources available to me thanks to the conference and I will definitely participate again next year.
Gretchen Brantley, MD, Pediatrician, Charlottesville, VA
This was an amazing conference. The only thing better than the conference was seeing the expression of joy on the face of a parent when I told her what I learned at the conference and when she realized that her child might find relief through information from the conference.
Sharon Packer, MD, Psychiatrist, Bearsville, NY
Webinar had medical experts from mainstream science discussing real science and clinical issues related to neuro autoimmunity, and gave excellent quality presentations and useful clinical information for these challenging patients.
Michael Chez, MD, Pediatric Neurology, Roseville, CA
I appreciated that the course had a mix of research information and clinical information. I found Dr. Vaishnavi’s lecture on TMS and neuroplasticity and the treatment of depression and OCD to be very helpful and presented in an easy to follow way. I also appreciated the covid related information presented.
Megan Webster, MD, Psychiatrist, Raleigh, NC
It was so exciting to learn about current research in neuroimmunology and how this will shape patient care in the future.
Priscilla Hidalgo, MD, Psychiatrist, Raleigh, NC
This is a rare conference that provides an engaging balance between fascinating cutting-age research, clinical pearls that deepen your practice and inspirational collegiality. It placed patients at the front and center of the conference, weaving together high caliber speakers in a very well-organized conference, thank you!
Nathalie Paravicini, ND, Portland, OR