Brought to you by the Neuroimmune Foundation
May 13-14, 2021
Interview between Gabriella True and Ana Conkey
Gabriella: Today, Ana Conkey, Board Chair of Neuroimmune Foundation, and I discuss their upcoming Inflammatory Brain Disorders Conference. If you have not registered, please do that today. And most importantly, if you have not invited a local doctor to attend – for free – please do that as soon as you read our interview.
Anna: Thank you so much for taking the time to speak with me today, Gabriella. I’m excited to chat with you and grateful for the opportunity!
Gabriella: Can you tell me about the Inflammatory Brain Disorders Conference you’re hosting May 13-14th virtually?
Anna: Yes! We are very fortunate to have an incredible group of speakers from highly-regarded institutions throughout the country joining us. Dr. Sam Pleasure, a neurologist from University of California—San Francisco (UCSF), is our keynote speaker the first day and will be speaking about neuropsychiatric presentations in pediatric COVID-19 patients. We are also very excited that his colleague at UCSF, Dr. Chris Bartley who is an immunopsychiatrist, will be discussing autoantibody discovery in psychotic spectrum disorders. The concept of autoantibodies as a driver for psychosis and neuropsychiatric illnesses is a new concept for most physicians. We are also really thrilled to have the Stanford Immune Behavioral Health Clinic (formerly known as Stanford PANS Clinic) team join us as, in my opinion, they’re the top experts in PANS in the country and really the world. Dr. Souhel Najjar, well known from the New York Times bestseller, Brain On Fire, will also join us and we are excited as he’s a well-known champion for individuals with these disorders. We are very excited that Dr. Jim Adams who is in the midst of MTT trials in autism will be joining us as well as we really think the gut microbiome is playing a big role in PANS and inflammatory brain disorders in general.
It has been exciting to hear the number of medical providers tell us “we haven’t seen this material presented anywhere else.” Really, we are excited about all 21 of our speakers and grateful they’re willing to share their expertise.
Gabriella: What are you hoping to accomplish with this conference?
Anna: Well, as you know, most people with neuropsychiatric symptoms end up with psychiatric diagnoses, psychotropic medications, and therapy. They rarely receive a thorough medical workup. Frequently, their suffering continues because these medications don’t work well enough or at all, or sometimes they have paradoxical effects. Immune-mediated or inflammation-related causes for mental illness are not usually considered by most physicians. Misdiagnosis is a huge problem for those impacted, their families, schools, and communities. Encephalitis can lead to permanent disability and even death, so prompt diagnosis is important.
So many of the families we serve have children with IEPs in school—needing any number of services—occupational therapy, speech therapy, services for emotional or behavioral issues, loss of handwriting skills, math skills, etc. Often times, when properly treated for PANS or a related neuroimmune disorder, these services are no longer needed. Things like dyslexia and dysgraphia can sometimes result from PANS and be treated with antibiotics, NSAIDs, or steroids. It is really remarkable to see how dramatically a child’s behavior, mood, and abilities can change with cheap and relatively safe medications. The burden on families and patient suffering from these disorders is devastating, especially when families have no idea what is going on. Many of the symptoms that are just unspeakable. A lot of suffering can be alleviated with prompt diagnosis and treatment. Our primary goal with the conference is alleviating some of that suffering by educating providers so that they can accurately diagnose these disorders and start treatment.
Gabriella: Why do you think there is still misunderstanding around PANS and PANDAS?
Anna: It took decades for handwashing to be accepted as a reasonable way to stop the spread of infection, so I think it is not surprising that PANS and PANDAS are still not widely accepted and understood. One of the silver linings of COVID-19 is the extremely rapid acknowledgement and acceptance of the notion that an infection can result in neurologic and psychiatric symptoms long after the infection has passed. So much money is being poured into research that I think will help not only families struggling with PANS, PANDAS, and encephalitis, but also patients with psychiatric illness where there has never been any consideration that perhaps there could be an underlying immune or inflammation related illness driving the symptoms.
Gabriella: Who is the target audience for this conference?
Anna: The intended audience for this conference is medical providers, both pediatric providers as well as those who see adults. The content is relevant for primary care providers as well as specialists in the fields of neurology, psychiatry, immunology, and rheumatology. The “P” in PANS refers to “pediatric” but as you know, PANS can continue into adulthood. Since post-COVID neurological problems can impact both children as well as adults and there is increasing evidence pointing to the fact that at least a subset of individuals with schizophrenia, bipolar, depression, anxiety, and related disorders can have immune-mediated or inflammatory brain conditions, the content will be appropriate for providers who see all ages.
We want medical providers to leave empowered to diagnose and treat these conditions, knowing where they can receive ongoing support after the conference is over. One of the things we have in place that I think is really important is monthly webinar opportunities for physicians to submit patient cases to our panel of experts and receive live feedback. Physicians can also submit general questions. We’ve found this is an important service that gives providers confidence to treat patients, knowing they aren’t going to have to do so on an island. There is support for them. The patients can be complex and challenging so we want to provide as much support as possible.
The first day of the conference is open to parents, patients, and families but all participants will receive a recording both days. The second day is limited to medical providers as we want providers to have all of their questions answered so they’re prepared to treat. Many PANS parents and patients are very bright and well-read and really looking for high level content to understand these disorders, so we are excited to be able to offer that to them too.
Gabriella: We are so grateful that you are putting this conference on. I know it has been a labor of love, and the number of hours has been herculean. On behalf of the community, I want to thank you for bringing together all these speakers for this conference. Conference details are below the interview.
Anna: Thank you so much for this opportunity, Gabriella. I really appreciate your willingness to share about this event as well as all of the great things that ASPIRE is doing for our community! It is wonderful to be able to collaborate with you.
The Inflammatory Brain Disorders Conference features nationally and internationally renowned experts skilled in diagnostic and therapeutic approaches who will present a diverse range of emerging clinical and research challenges, insights, and advances in the field of inflammatory brain disorders. The conference will be held live virtually. All registrants will receive a recording of the entire conference.
May 13 – Day 1: The intended audience is pediatric and adult physicians but parents/families are invited to attend virtually on day 1. The conference is designed for pediatricians, family physicians, psychiatrists, rheumatologists, immunologists, neurologists, and infectious disease physicians. Though the conference is designed for physicians, physician assistants and nurse practitioners will find the series valuable to their practices as well. This Jointly Provided activity that has been awarded a maximum of 11 AMA PRA Category 1 Credit(s)™.
May 14 – Day 2: For medical providers only. Open to MDs, DOs, NPs, and PAs and will feature an intensive designed to give medical providers the tools they need to feel confident diagnosing and treating inflammatory brain conditions including PANS. Parents will be able to watch via a recorded link after the conference.
Please see the Foundation for Children with Neuroimmune Disorders for more details on speakers, topics, and pricing.
*All* new physician registrations in the United States will be free thanks to a very generous donor! This applies only to new registrants. Those who were already registered and cancel their registration and re-register will be billed. NPs and PAs in the following states may also register at no cost as well: Georgia, Iowa, Maine, Wisconsin, Virginia, California, Washington, Vermont, Texas, Tennessee, South Carolina, North Carolina, Pennsylvania, Oklahoma, New York, Minnesota, New Jersey, New Hampshire, and Maryland.