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On Your Mark, Get Set, Register for Florence Forth January 8, 2021

Meet Lisa!  (Video production by Jack Chipman, www.jchipman.com) On Saturday, March 6, 2021, AE Alliance will organize the 9th annual Florence Forth run/walk in Durham, NC and kick off the first virtual Florence Forth run! Will and Leslie McDow started the Florence Forth run’/walk to commemorate the day that their six-year-old daughter Florence died from […]

Giving Tuesday is Now! December 1, 2020

The 2020 year has been unprecedented in so many ways. Though this pandemic has wreaked havoc in all our lives, our AE community has experienced the disruptions in profound and tangible ways, from interruptions in treatment to implementing particularly stringent measures to protect fragile immune systems. In partnering with you through your journey with AE […]

Thank you November 26, 2020

Today is Thanksgiving, a holiday for the family to come together and give thanks. This year will be different as not all families will be able to reunite for the holidays due to COVID-19. This situation may apply to our AE community even more so, as many of you are on immunotherapy or just finishing […]

We are sending virtual hugs! November 19, 2020

November is National Family Caregivers Month, which recognizes and supports all the work caregivers do to support their loved ones with autoimmune encephalitis. There are over 53 million Americans who are unpaid caregivers to family, friends, and neighbors. Caregiving often has a significant impact on the life of the caregiver. It can make maintaining your […]

World Encephalitis Day 2021 November 18, 2020

World Encephalitis Day is around the corner, and the theme for 2021 is Lights, Camera, Action! Lights – Light up a local landmark Red for WED Camera – Wear Red for WED Actions – Raise Awareness The Encephalitis Society launched World Encephalitis Day in 2014 and, in the years since has reached 187 million people. […]

Up to 75% of AE patients see a psychiatrist first October 29, 2020

We had the pleasure of having psychiatrist Stephen Rush, MD discuss the role of psychiatry in AE at our recent Midwest Support Group meeting. Dr. Rush is an Associate professor of Psychiatry and the Medical Director of Ambulatory Services at the University of Cincinnati Department of Psychiatry and Behavioral Neuroscience. In his practice he not […]

Vitamin D October 15, 2020

Vitamin D (cholecalciferol) is a nutrient found in some foods like fatty fish that can be added to your diet as a supplement. Our body makes vitamin D when our skin is directly exposed to the sun, and most people meet at least some of their vitamin D needs this way. Vitamin D is required […]

Working together to ensure best outcomes for AE patients. October 8, 2020

Dr. Pojen Deng and Dr. Anusha Yeshokumar (Mount Sinai Health System) discuss autoimmune encephalitis and a multidisciplinary approach to AE Care for the Psychiatric Times Health Minute. They also discuss long term management strategies, including recognition of broad psychosocial ramifications as well as individual cognitive and psychiatric sequelae. https://www.psychiatrictimes.com/view/collaborating-best-outcomes-patients-autoimmune-encephalitis

Good news! October 4, 2020

Everyone knows about the devastation the forest fires are causing in California, Washington, and Oregon. Millions of acres have burned, thousands of buildings have been destroyed, and lots of families have seen their house burn down. Amidst, the devastation, there was a light, a CASPR2 encephalitis survivor. Bob Given, who is 76 years old, was […]

Multiple co-existing antibodies in Autoimmune Encephalitis September 3, 2020

Dr. Ryan Kammeyer and Dr. Amanda Piquet (University of Colorado) discuss a patient with autoimmune encephalitis (AE) with multiple auto-antibodies and review the literature to look at how these multiple auto-antibodies might relate to an underlying malignancy, and how unique features of the auto-antibodies may blend together into a new presentation. AE can occur with […]