Kids cape dash at Florence Forth road race (Photo: Courtesy of Leslie McDow)
by Andrew DeCanniere
Ever since I learned of the Autoimmune Encephalitis Alliance from Susannah Cahalan, who recalls her own harrowing 2009 battle with a then little-known condition called “Anti-NMDA receptor autoimmune encephalitis” in her 2012 book Brain on Fire, I wanted to highlight this wonderful organization made up of dedicated volunteers who collaborate with medical professionals to spread the word about the disease, find a cure and create a community so that nobody has to face autoimmune encephalitis on their own. This week, I had the opportunity to speak with one of the founders, Leslie McDow, about the organization, the upcoming Florence Forth road race and much more. Read on to see what she had to say.
UR Chicago Magazine: For those who don’t know, how did the Autoimmune Encephalitis Alliance come to be? What are it’s goals or what is it’s mission?
Leslie McDow: The Autoimmune Encephalitis Alliance is a 501(c)(3) non-profit organization that we started back in December of 2012. My husband and I lost our daughter, Florence, to autoimmune encephalitis in March of 2012, when she was six years old. The disease process had gone on so long, it had really rooted in her immune system. The drugs that were available at the time weren’t managing the disease process, so her quality of life wasn’t great. She had a lot of seizures, balance issues and other issues as well. Florence went through two bone marrow transplants at Duke Hospital. The first was using her own cord blood. After that first transplant she had an amazing rebound in her health and activity, in her ability to function as a normal kid. It was pretty remarkable, but it was clear the disease had some sort of genetic root, and it started coming back. She went in for a second transplant and contracted a couple of infections that, essentially, took her life. She had about a four year battle with the disease, and we really didn’t even know of the disease until about three years into her having it. There wasn’t a lot of information out there. There certainly weren’t any community groups. You really couldn’t even look up the definition. Doctors were very vague about the disease. There wasn’t a lot of research. As you can imagine, this four year period — three years of not knowing what she had — was a really hard time for our family.
All that being said, we came away from losing our daughter feeling a need to do something in her honor. She taught us a lot of life lessons about overcoming struggle, living day-to-day, and about being thankful for what you have — especially when you have your health. We just really wanted to do something around the disease, because there was so little out there about it. From there, we began communicating with her doctors at Duke, asking them what the needs were out there. We knew, from a family and parental perspective, the information was greatly needed as well as some sort of a community aspect of it. At about the same time, in the fall of 2012, Susannah Cahalan’s book, Brain on Fire, came out. It was getting a lot of press on public radio and national TV, so we heard about her book and purchased a copy and we read it. We were stunned because this was the same disease our daughter had, and this was the first adult we had heard of having this disease. We reached out to her and, in reaching out, she put us in touch with another family that happened to live less than five miles from our house, whose son had the disease.
We were stunned and went to meet the family. We immediately shared a connection, not only around the disease and what our families had been through, but this need to provide information about the disease. Their son is — and was at the time — doing a lot better with the disease, and with managing it, and seemed to be good at that point for them to think about embarking on this non-profit adventure with us. Then we met Susannah. She had come down to Duke to do some grand rounds information meeting at Duke with some doctors, and it just kind of started rolling after that. In December of that year we got our 501(c)(3) status, incorporated here in North Carolina. The first full year of the Autoimmune Encephalitis Alliance was 2013.
UR: And now you have a race coming up as well.
LM: My husband and I were big runners. We run as a stress management tool. Florence and our other daughter, Laura, were often in the baby jogger as babies, so they were very acclimated to running as well. After Florence died, my husband and I also wanted to have a road race to raise money. We named it Florence Forth because Florence died on March 4th, 2012. That date was a command, to march forth — to march forward, to keep moving. Someone brought it to our attention shortly after she died, and that was really relevant to us and so like Florence. That’s just how she lived her life, even with this horrible disease. She just kept marching forward, moving forward. When we decided on a race name and logo and all of the things around Florence Forth, it was very important to us to utilize things that mattered to her. The logo itself is an emblem of a girl running with a cape. We wanted to use Florence in the name. We wanted to use movement, forward motion. All of that kind of played into using the name Florence Forth for the race — and into kind of making this verb: to Florence forth. Then there’s the logo — the runner girl with a cape moving forward — and the use of purple. Purple was her favorite color.
This race that’s coming up is to be our third race. For our first race, we had 700 runners and netted about $12,000. The proceed went to Duke to help form their first Autoimmune Brain Disease Clinic. It’s pretty unique in that it’s dedicated strictly to patients with this disease. For our second race, which was in 2014, we had about 1,100 runners and raised $40,000. That money was used to host the first autoimmune encephalitis doctors symposium. That took place at the end of March of last year. We had about 20 or 22 doctors come to Durham from all over the world who all came to talk about the disease in a roundtable format. That was a very effective, impactful meeting that was needed, even within the physician community.
We also had a family lunch after last year’s race. Families were traveling to Durham for the Florence Forth road race, in order to meet other families who were dealing with the disease, to make connections. It was amazing to watch the interaction amongst people who are dealing with the disease, to hear them talk and sympathize with each other and just form this bond. Last year we had about ten families for the race who attend this lunch. This year we have about 22 families traveling for the race who are planning on attending the lunch afterward. That’s one of the most amazing parts of the race, seeing families connect and interact after the race is done. It’s pretty neat.
Finish line at Florence Forth road race (Photo: Courtesy of Leslie McDow)
UR: And it’s great that you’ve been able to get so much information out there in such a relatively short amount of time as well.
LM: We’ve been very thoughtful about how we named the organization, as well as the material we provide on our website. We didn’t want it to be child or adult-specific. It needed to cross into both pediatric as well as adult care. We just decided to embrace the name. It’s a mouthful, but we really needed to be descriptive in terms of what we’re dealing with as far as the disease process. Then, for our website, the first thing we did was contract two documentarians who helped us put together a story with a family and doctors in order to explain the disease. We just didn’t feel like there was enough information for people to understand what this is. We have an eight minute video called Across the Starting Line, which talks about the disease and highlights one family with a child who’s doing well and was going through the disease. That was one of the first things we embarked on in putting our website together, as well as providing doctor and patient information. We’re volunteers and family members, so we’re not experts. Our website isn’t there to say ‘You should do this,” or ‘You should do that.’ It’s more about things you should consider doing, if you think you have the disease. That’s been very important for us.
Another thing our website has done is provide a clinicians’ network. Now that we have the website up, we all receive information from patients and parents around the world, asking who they should go and see or who is near them that can help that knows of the disease — someone who has treated it previously. We’ve worked hard to provide a network of people who have self-identified as being able to diagnose and treat autoimmune encephalitis. It’s an amazing resource and we’re now able to point parents and family members to that resource and say ‘Here are the people who self-identify as being able to treat and diagnose this disease.’ They can then find someone close to them or who their insurance will cover who can help them.
UR: Which is great because, as I learned from Susannah, the way that autoimmune encephalitis presents isn’t the same. It can and does vary from person to person.
LM: You’re exactly right. It presents in each person differently. The disease is a wacky process. For my daughter, who started having disease symptoms when she was two years old, it presented with more neurological symptoms. As you know from Susannah’s book, with her it presented with more psychological symptoms. I remember the instance where she’s working at the New York Post and she’s walking down the hall, seeing these weird pictures come off the wall at her. She’s having all these secondary thoughts while she’s trying to focus on the interview, and she’s having a lot of psychosis. What happens when you go see a doctor when you’re having psychosis-like symptoms is that they’re going to treat you for psychosis, and not think about what’s causing the symptoms. When you see a neurologist, it’s the same thing. They’re going to treat for seizures. What this disease requires is for these doctors to think outside of their areas of expertise. They’re having to collaborate to find out what’s going on with the patient. What we’ve found — and what Duke and some other institutions around the country have found — is that when psychiatrists and neurologists and rheumatologists work together and talk about one patient together, a lot of the time they’re having more success at quicker diagnoses of this particular disease and quicker success rates. I wouldn’t say ‘curing’ the disease, but at least in putting the disease in a manageable state.
UR: As far as the organization itself or the race goes, if someone wanted to get involved, how could they do so?
LM: We’re always looking for help. Just for the race itself, we need 120 volunteers to make it happen. I think the biggest thing is help in spreading the word about the disease. That’s why we do the race. It’s a great fundraiser for us. It’s also a great way to talk about this disease. Everybody who runs this race understands that all proceeds benefit the Autoimmune Encephalitis Alliance. Last year these proceeds were used to host the first autoimmune encephalitis symposium of doctors. People can help by volunteering for the race, but also by hosting more events around the country about the disease — whether it’s educational events or grand rounds at certain hospitals. That’s been huge for us. We’ve gotten Susannah and a couple of doctors we work with closely — either at Mayo Clinic or Duke or Stanford — to go to different hospitals and give talks to incoming classes or residents about what this disease is and how you cannot sit in your box, in your expert field, thinking that you know it all — and if you don’t know it all, you need to ask for help, especially when you have a patient that presents in some very complicated ways.
UR: And that right there is the key. Not to stereotype, but I think doctors sometimes are reluctant to ask for help, to consult other doctors or to admit when they may not know the answer or when they need help themselves.
LM: I think you’re exactly right. I think the profession has felt this need to be an expert, to show you’re an expert, and not to show that you don’t know things. Some of the doctors that I respect the most have been the most communicative about what they know, what they don’t know and what they want to find out.
UR: Do you have any other events planned in the near future?
LM: Yeah. It feels like we’ve had a lot of great success in just a short amount of time that we’ve been out there. We’re in our third year, so we have more plans this year. There’s a conference in Barcelona hosted by Lancet Neurology. Lancet is one of the top neuro journals, and they’re hosting a conference to talk about the disease. I think it’s in late March. They asked us to be there. They’re going to be discussing a ton of diagnostic tools and the definition of the disease, and it’ll be a very, very good group for us to meet from the doctor community and to get our name out for their families, even around the world and try to engage people. We communicate with a lot of people in Australia and England and even in the Middle East to try to get them seen by doctors who know this disease.
Leslie McDow is the Principal of Owl Tree Solutions, a contract services firm providing marketing, strategy and analytic services to credit unions and non profits. She brings over 15 years experience in banking and finance. And four years of patient advocacy as her and Will’s daughter, Florence, suffered from autoimmune encephalitis. Leslie attended Davidson College and the University of Tennessee College of Business for her MBA. She enjoys tennis, running and biking.
To learn more about autoimmune encephalitis and the Autoimmune Encephalitis Alliance itself, visit their website, www.aealliance.org, where you can find many resources, including information on the symptoms and treatment of the disease. You can also find the Autoimmune Encephalitis Alliance on Twitter @AE_Alliance, on Facebook at www.facebook.com/AEAlliance, on YouTube at www.youtube.com/user/AutoEncephAlliance and on Vimeo at www.vimeo.com/aealliance.
For additional information about the upcoming Florence Forth road race or to register for the race, scheduled to take place in Durham, NC on March 7th, 2015, visit www.florenceforth.org. Proceeds benefit the Autoimmune Encephalitis Alliance. You can also find Florence Forth on Twitter at www.twitter.com/FlorenceForth and on Facebook www.facebook.com/FlorenceForth.
This interview originally appeared in Chicago Splash Magazine.