2020
OH Support Group meeting
Information – This Support Group brings together patients and caregivers that have been affected with Autoimmune Encephalitis. The support group provides an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, or firsthand information about AE and/or treatments. The Ohio Group is led by Therese Fledderjohn. Her son Alex was diagnosed with anti-NMDAR encephalitis after being misdiagnosed for many years. As you all know, caring for a child with AE takes over your life, but still Therese finds the time and energy to help others and raise awareness.
Date – June 20, 2020
Location – Due to the Coronavirus, this meeting will be offered online.
Type – Local Support Group meeting
AEA Family weekend
Information – You are invited to join us from March 6 – 8, 2020 for the AEA Family Weekend in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. Meet with experts in the field of Autoimmune Encephalitis. There is plenty of time for fun and recreation too, all while you connect with other families and make new friends.
Date – March 6 – 8, 2020
Location – Durham, NC
Type – patient and caregiver conference
Click here for a recap of the event
Florence Forth Road Race
Information – Florence Forth was started by Leslie and Will McDow who lost their daughter Florence on March 4th, 2012 after a long battle with autoimmune encephalitis. Read more.
Date – March 7, 2020
Location – Durham NC
Type – 10K, 5K run and walk
World Encephalitis Day Conference 2020
Information– AE Alliance is proud to be joining forces with The Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, the Encephalitis Society, HESA, and Encephalitis Global in organizing the World Encephalitis Day 2020 Conference in Dallas, TX. The World Encephalitis Day 2020 Conference welcomes survivors and caregivers to attend and interact while celebrating World Encephalitis Day.
Date – Februeary 21-23, 2020
Location – Dallas, TX
Type – Patient and caregiver conference
NYC Support Group meeting
Information – This Support Group brings together patients and caregivers that have been affected with Autoimmune Encephalitis. The support group provides an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, or firsthand information about AE and/or treatments. This Support Group is led by Joe Calcagno, a GAD65 survivor.
Date – February 22, 2020
Location – Lenox Hill Hospital, NYC, NY
Type – Local Support Group meeting
OH Support Group meeting
Information – This Support Group brings together patients and caregivers that have been affected with Autoimmune Encephalitis. The support group provides an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, or firsthand information about AE and/or treatments. The Ohio Group is led by Therese Fledderjohn. Her son Alex was diagnosed with anti-NMDAR encephalitis after being misdiagnosed for many years. As you all know, caring for a child with AE takes over your life, but still Therese finds the time and energy to help others and raise awareness.
Date – January 25, 2020
Location – West Chester hospital, OH, Plaza room
Type – Local Support Group meeting
2019
Brain on Fire 5K for Hope
Information – The Dewees Family is organizing a 5K run to raise awareness for Autoimmune Encephalitis in honor of their son Luke. He was diagnosed with AE a day after turning 13 and suggested they would organize a run to raise funds and awareness. Read more.
Date – September 21, 2019
Location – Friedman Park, Newburgh IN
Type – 5K run and kids fun run
Amount Raised – $26,000
Walk on Walk on Together Anti-NMDAR Encephalitis Awareness
Information – Team Fledderjohn is fundraising and raising AE Awareness in honor of their son Alex. Please join them 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. Read more.
Date – August 17, 2019
Location – West Chester Hospital, OH
Type – AE Awareness gathering
Amount Raised – $3,323
Florence Forth Road Race
Information – Florence Forth was started by Leslie and Will McDow who lost their daughter Florence on March 4th, 2012 after a long battle with autoimmune encephalitis. Read more.
Date – March 2, 2019
Location – Durham NC
Type – 10K, 5K run and walk
Amount Raised – $38,000
Host your own AE Awareness gathering
Raising AE Awareness is key to early diagnosis and treatment.
AE Alliance has created an ‘AE Awareness tool box’, which you can use for your gathering. You can host a gathering at your house, at the parc, during coffee or lunch at your work, over dinner, at a clubhouse, the library or maybe even a restaurant.
What is in the AE Awareness tool box?
A presentation including the AEA movie
Stacks of AE Awareness cards
AE Alliance brochures
If you would like to host a gathering, simply fill out the registration form. If you have any questions or need help organizing your event please contact us.