March fourth is the only day of the year that’s a verb, too. So when Will and Leslie McDow lost their young daughter, Florence, on 3/4/12 to an (at-the-time) obscure disease, they listened. They donned their capes and started a race.
Florence, who famously wore a pink cape during her hospital stays, passed at age six due to complications from Autoimmune Encephalitis. And as recently as 2012, most people with AE were misdiagnosed, or, like Florence, diagnosed too late. The disease, which can present with a variety of neurological symptoms – from tremors to psychiatric episodes, occurs when the immune system attacks the brain.
The McDows worked with another couple, The Eggers, whose son is living with AE, to create the AE Alliance for patients and family members.
“We are working to make this a disease of hope,” says John Spencer, Executive Director of the AE Alliance, and friend of the McDow family, explaining that, if detected early and treated aggressively, people with AE have a greater chance at living a healthy life again.
So the Autoimmune Encephalitis Alliance marches forth, on a mission to tell you, me, and everyone we know that this disease exists.
When Awareness Matters
The AE Alliance is local to Durham, NC, so I met up with Spencer at a local restaurant, Beyu (pronounced “be you”) Cafe. Beyu is a Durham, NC institution, home to many business lunches, which give way to evening wine and jazz sessions. And though it serves people around the world, the AE Alliance grew out of Durham, NC, too. It’s a location Spencer is grateful for.
“We feel fortunate to have a world class institution like Duke. That gives us a lot of credibility,” he said.
But, Spencer added, there’s more to this region than academic connections.
“A giving spirit and one of involvement exists in this community. Whether it’s for AE, or Race for the Cure, or for MS, or for any number of diseases, it’s a area of inspired community support.”
For the AE Alliance, the giving comes strongest around the first Saturday in March, when the Florence Forth race is held in Durham to raise funds for research and for awareness.
Awareness-raising, especially when it’s for diseases of enough note to merit their own months, can feel like an insufficient cause. But Autoimmune Encephalitis is one of those rare cases in which awareness may be more needed than a “cure.” The disease been misdiagnosed for decades, as everything from schizophrenia to “alcohol withdrawal,” due to the erratic nature of its symptoms.
Spencer mentioned a 2014 international symposium hosted by the AE Alliance., after which doctors came up to the Alliance founders, saying “I am sure that I put people in a mental institution who had this disease.”
But awareness is increasing. The AE Alliance website, which ranks at the top of Google for the term “Autoimmune Encephalitis,” has had 600K visits throughout its existence, 300K of which occurred during 2016 alone, Spencer said. He added that a nonfiction book on living with undiagnosed AE, written by AE Alliance board member, Susannah Cahalan, is leading to further understanding of the disease, especially now that the book was adapted into a soon-to-be-released film starring Chloe Grace Moretz.
The Next Step
The AE Alliance is as much support group as it is awareness incubator. AEA works to connect patients and caregivers with medical resources, physicians, and other data , and connects them with each other.
“We connected two people from the Philippines recently who each thought they were the only person in the world with the disease. And two weeks ago we were able to introduce two people from Oregon to one another to discuss their experiences,” he said.
Since AE can lead to a variety of outcomes – from full recovery, to partial recovery, or to lasting physical disabilities – the AE Alliance works as a network of support, while working to make the situation better for future patients. Spencer calls this the “spirit of paying it forward.”
“Some people recognize that they can’t be helped any further, or that people they care for can’t be helped any further, but they want to make sure that people in the future don’t suffer as much as they have,” he said. “These individuals as well as all of our supporters help us fulfill our mission of ensuring that no one faces AE alone. We could not exist without all of our volunteers, business partners, and AEA families.”
Spencer, who worked previously to help build a startup, is familiar with young business challenges and strategies. The McDows asked him to join the AE Alliance as Executive Director in early 2015.
“I am honored to have the opportunity to serve others and work with a caring and stellar board of directors,” he said. On taking the job, “[It was] one of those rare times when all of my past experiences, both vocationally and otherwise, were leading me to this meaningful role.”
“One of those times when you know what the next step is,” he added.
The next Florence Forth takes place on March 4, 2017.