Florence Forth

Florence Forth Race draws over one thousand runners and walkers

The AE Alliance hosted the annual Florence Forth Race on March 3, 2018, drawing over 1100 runners and walkers. Some were AE survivors and their families from all over the nation and Canada. Cold weather did not dampen the spirits of participants as they ran, walked and cheered each other on for this fundraiser that raised a record $70,000 for the AE Alliance. All money raised will be used to support patients and families as well as to improve clinical care by educating physicians across the country and help in the search for a cure for AE.

We are grateful to all the heroes who supported this event, including the participants, the 100+ volunteers who made it possible, those who supported us financially but could not make it in person, and the AE Alliance board members. We are also thankful for our many faithful sponsors. Florence Forth is the premier community event and fundraiser for the Autoimmune Encephalitis Alliance.

Other events were held during the weekend for AE survivors and their families, including a meet and greet Friday night, children’s activities on race day, and a BBQ luncheon at The Pit after the race, where families made meaningful connections and shared a bit of their story. AE survivor Leah Ehle said, “AE can be a

lonely condition to deal with. Meeting others who have been through similar experiences really helped put things into perspective. I’m very grateful to the AE Alliance for organizing an event where people can make these connections.” Other patients and family members mentioned how invaluable it was to have informal conversations throughout the weekend with others in similar situations. Knowing one is not alone in the battle against AE is reassuring.

Capping the weekend was a question and answer session with two doctors specializing in the field of neuroimmunology, who joined us virtually after their flights were grounded by a snowstorm. Anusha Yeshokumar of Icahn School of Medicine at Mt. Sinai and Eliza Gordon-Lipkin of Kennedy Krieger graciously answered questions from patients on many diverse topics related to AE. They also informed us of their ongoing research in the area of longterm outcomes for AE survivors.

Florence Forth was named in memory of Leslie and Will McDow’s daughter, Florence who bravely battled AE for 4 years. She left us with the inspiration to “March Forth.” Please mark your calendar to join us next year on March 2, 2019 in honor of Florence and all patients and families touched by AE.

 

Leslie and Will McDow

 

Daniel and Helen Egger greet Paula at lunch

 

 

 

 

 

 

 

Photos used with permission, Liz Condo Photography.