Events

2020

NY 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. 

We are honored to have Dr. Fred Lado (Northwell) speak at this meeting. He will focus on seizures in AE. 

Date – October 24, 2020, 2PM EST 

Type – Local Support Group meeting

Location – Due to the Coronavirus, this meeting will be offered online.

If you live in NY or any of the surrounding states, please email us at: [email protected] to join the meeting.

To register click here.

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. 

We are excited to let you know that Dr. Stephen Rush will speak at this meeting.

Dr. Stephen Rush is an associate professor of psychiatry at the University of Cincinnati’s Department of Psychiatry and Behavioral Neuroscience.  Since becoming a faculty member in the department he has been involved in the treatment of patients with severe and refractory forms of major depressive disorder, bipolar disorder and schizophrenia spectrum disorders amongst others and receives referrals from various states in the country.  He started a transcranial magnetic stimulation clinic at University of Cincinnati Medical Center, which has morphed into a Treatment Resistant Depression program, of which he is the co-director.  He is also involved in community outreach, serving on the Tardive Dyskinesia Expert Panel and Clozapine Expert Panel for the Cure SZ Foundation, as well as doing speaking engagements and outreach for the Autoimmune Encephalitis Alliance amongst others.  He currently serves as Medical Directory of Ambulatory Services for the UC Department of psychiatry.  His clinical practice includes both inpatient and outpatient work, both with an emphasis on severe mental illness. 

Date – October 10, 2020 at 1:30 PM EST

Location – Due to the Coronavirus, this meeting will be offered online.

Type – Local Support Group meeting

If you live in OH or any of the surrounding states, please email us at: [email protected] to join the meeting.

To register click here.

TX 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 TX Group is led by Lisa Lauter, a LGI1 antibody encephalitis survivor. You can read more about her AE journey here.

At this meeting we will have Dr. Anusha Yeshokumar speak about outcomes in AE. Dr. Anusha Yeshokumar is a neurologist and the co-chair of the Medical Advisory Board. She has a special interest in outcomes related to AE. 

Date – September 26, 2020, 2PM EST 

Location – Due to the Coronavirus, this meeting will be offered online.

Type – Local Support Group meeting

If you live in Texas or the surrounding states, please email us at [email protected] to join the meeting.

To register click here. 

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. 

Dr. Stacey Clardy (University of Utah) is a speaker at this meeting and she will share more about her approach to AE Care and research. 

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. 

We are honored to have Dr. Souhel Najjar (Northwell) speak at this meeting. He will share more about his approach to AE care and the AE Clinic. 

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.