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 speak at this event and there will be room for questions. This is their story:
After 7 years of misdiagnosis, our son, Alex was finally diagnosed with Anti-NMDAR Encephalitis by his 6th Neurologist. Since then Alex has relapsed. This is a horrible disease, and there needs to be more awareness and educational avenues and opportunities for the medical community and the public.
On Netflix you can now watch the movie “Brain On Fire” which is about Susannah Cahalan’s story with Anti-NMDAR Encephalitis. Although her story ended with recovery, not everyone’s story ends that way. Even those who recover may not regain all they once had or once were. This disease can target children and adults of all ages and backgrounds. Early diagnosis and aggressive treatment greatly improve outcomes while delayed diagnosis and treatment can lead to permanent brain injury and/or loss of life.
Our son, Alex had a smile that brightened any place he entered. He was an avid reader and loved to learn. His heart was always in the right place. With much struggle he finished the last class he needed to graduate from The Ohio State University with a BA in Psychology. He chose Psychology because he wanted to help people live better lives and be the best they could be. Unfortunately, after this disease, he cannot do that for himself (let alone for others). So, we as “Team Fledderjohn” will advocate for him and help others as he wanted to help them.
We are doing a fundraiser in honor of Alex for AE Alliance. We do not want anyone else to suffer because of this disease. Please share with family and friends, and together we can be a force for education and a beacon of hope for others. We pray that others will never have to deal with this because a cure will be found. – Team Fledderjohn.
AE Alliance wants to thank Team Fledderjohn for organizing this great and much needed event to raise awareness and raise funds to invest in research.
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The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness.
Mark your calendar for the Educational/AE Awareness gathering
Date/Location – August 17, 2019 (2 – 4PM) at West Chester Hospital – Plaza Room in West Chester, OH
Speakers will include:
- Stephen Rush, Psychiatry, UC
- Elizabeth Dragan, Neurology, UC