The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
AE Alliance receives questions on a daily basis from patients and caregivers on diagnosis, treatment, recovery, and research. Sometimes these questions are very specific, but often they will apply to a lot of patients and caregivers. Starting in October, we will have a new segment in our newsletter: Ask the Panel. Your question will be …
Early diagnosis of AE allows for aggressive treatment, which greatly improves recovery outcomes. On the contrary, delayed diagnosis and treatment can lead to permanent brain injury or even loss of life. In literature, no work has been published which compares clinical, radiological and laboratory characteristics of patients with definite autoantibody-positive AE (AE+) and autoantibody-negative AE (AE-). …
The Board of Directors of the AE Alliance seeks an Executive Director to lead its global efforts in educating physicians, supporting patients, families, and caregivers, and advocating for a cure to autoimmune encephalitis. THE LEADERSHIP OPPORTUNITY Reporting to the Board of Directors, the Executive Director of AE Alliance strategically leads the organization and its staff …
Team Fledderjohn is fundraising and raising AE Awareness in honor of their son Alex, a bright young man who was diagnosed with Anti-NMDAR Autoimmune Encephalitis after being misdiagnosed for over 7 years. Please join them on August 17, 2019 in West Chester, Ohio for an AE Awareness gathering. They will have a neurologist and psychiatrist …
The Dewees Family is organizing a 5K run to raise awareness for Autoimmune Encephalitis. March 2019, just one day after turning 13, Luke Dewees was diagnosed with Autoimmune Encephalitis. The next month was a terrifying and trying time. Luke spent more than 3 weeks in the hospital battling this rare and evasive disease. With the …
Robert Given was diagnosed with CASPR2 encephalitis at the age of 71. Up until that point he was running his CPA firm and was heavily involved in the community. Then suddenly his world was taken from him. Nevertheless, Robert feels he is lucky. Lucky to have been diagnosed quickly, lucky to have received proper treatment. …
We would like to invite all AE patients to participate in a study which surveys for symptoms following encephalitis. The study is being led by Dr. Venkatesan at Johns Hopkins University in collaboration with Dr. Yeshokumar at the Icahn School of Medicine at Mount Sinai. While encephalitis may result in the development of a number of persistent symptoms, …
A group of researchers from the Autoimmune Neurology Group at the University of Oxford led by Dr. Sarosh Irani, recently published an article in the Lancet Psychiatry, noting that a focus on the psychopathology is likely the most effective way to promote prompt recognition of NMDAR-antibody encephalitis. NMDAR-antibody encephalitis is an autoantibody-mediated disease that typically presents …
Texas Children’s Hospital will hold their AE Day of Strength on July 27 in Houston TX and you are invited to join! The AE Day of Strength will allow patients and their families to hear disease updates, discuss coping strategies and connect with other AE families. There will be special activities to honor all siblings. …
NORD has launched the Rare Caregiver Respite Program, a first-of-its-kind program aimed at providing caregivers of rare disease patients a much-needed respite. Caring for a loved one with a rare disease demands significant time, attention, patience and dedication. NORD’s Rare Caregiver Respite Program is designed to give back to caregivers—the parent, spouse, family member, or …
