Fellow Survivors Gather at Florence Forth

Emily_Susannah_Madison_croppedI am not a runner. I cringe at the thought of running. So naturally, when Susannah Cahalan told me about the Florence Forth Road Race in Durham NC, I was a bit skeptical. However, when she added that there would be fellow survivors of autoimmune encephalitis attending, I made my decision to go. There were so many people I wanted to meet.

“So Happy to Be There”

My family is from northeastern Pennsylvania, which is about an eight hour drive from Durham. We squished into the SUV early on Friday and arrived at the hotel that evening. It made my parents and me so happy to be there.  That night I was able to reconnect with a very special little girl, another AE survivor. I surprised her in the hotel lobby, well after her bedtime, to share hugs and stories and excitement about the race.

Florence Forth: A community of supporters

Team fall Risk_croppedThe next morning we got ready to Florence Forth. I donned a green and orange tutu and a t-shirt bearing my team name: Fall Risk. Our group of twelve walked over to the race. The already-enthusiastic crowd gave me a rush of exhilaration One thousand runners and walkers had assembled on a chilly March morning to support me and other autoimmune encephalitis patients and families.  This non-runner was ready to go.

The course really is beautiful. And the community of Durham is so supportive, with neighbors standing out in front of their houses to cheer on the runners or provide them with water.
I ran. Then walked. Then ran some more.

Being there was what mattered, not my race time (although I plan on beating my time when I return to Florence Forth in 2015). And as I finally ran across the finish line with one of my oldest friends, I felt a rush of pride. I did it.

The AE Community Gathers for Lunch

After the race, the AE Alliance graciously held an intimate luncheon for AE patients and their families. At first, I was a little nervous to be surrounded by all these people who shared some part of this terrible disease. I sat down to enjoy the delicious southern barbecue.  I relaxed and began to take in what was one of the most powerful experiences of my life. Everyone chatted and mingled and connected.

I met a family with two strong teenage daughters who watched their mom suffer with AE – and then saw her through recovery. They were standing by her proudly, smiling. I met families who had heard the story of my recovery and were inspired and filled with hope.  I met a team of beautiful women who ran to honor the daughter, sister and friend that they lost to this disease. We cried. We laughed.

It was very emotional to meet people from all over who have been affected by AE. It affirmed my decision to attend the Florence Forth Road Race, even more than the accomplishment of finishing.  And I was glad to have the support of my friends and family there.

Gathering Again

As a survivor of Anti-NMDA Receptor Autoimmune Encephalitis, running the Florence Forth Road Race and fundraising with my team was a small way for me to give back – but it was a huge way for me to become a part of this community of fighters.  Last year’s race raised $40,000.  The race proceeds allowed the AE Alliance to hold the first International Symposium on Autoimmune Encephalitis.  The AE Alliance also organized several education events for doctors and initiated the online AE Clinicians Network.

If you or a loved one has suffered from AE, I encourage you to join us for the 3rd annual Florence Forth on March 7, 2015.  Get all the race details, register, and consider creating your own fundraising team. Here’s a blog detailing how to create a fundraising team.

I can’t wait to meet you in Durham at Florence Forth on March 7, 2015.


Emily Gavigan is a survivor of autoimmune encephalitis. She is currently a graduate student living outside of Philadelphia.