It’s been an amazing five year journey together—and we are just getting started.
Over the past five years we have done so much together.
Across the Starting Line
The ideas for a nonprofit organization and a road race were born in Florence’s hospital room. After 3 years of searching, Florence was diagnosed with autoimmune encephalitis (AE). Back then,there was no information for families and few medical journal articles. Knowledge was scarce and, even worse, we were isolated from any other family facing the same disease.
We began the AE Alliance to educate doctors and connect families. In our first six months we hosted an inaugural, medical Ground Rounds for 50 doctors, nurses, and researchers.We also launched a website, raised $11,000 at the first Florence Forth for the fledgling Duke Autoimmune Brain Disorders Clinic and chronicled it all in a short movie aptly named Across the Starting Line. The journey had begun.
The First Florence Forth
That first Florence Forth set us on the course we still follow today. In 2012, Florence Forth was a 10-mile race starting on Duke’s East Campus. We had amazing food from a dozen local restaurants. Leslie and I had never organized a road race before and couldn’t have imagined that 700 people would show up.
We began the race with the tagline: Race, Run, Walk. We wanted Florence Forth to be something for everyone. After five years, we remain committed to being the best volunteer-run race in Durham offering something for elite athletes to first time runners and walkers—and all the recreational runners in between. The kids cape dash has become one of my favorite parts of the race.
Racing Toward a Cure
Over these past five years your participation in Florence Forth has helped raise over $210,000 for the AE Alliance. The race has evolved into a full weekend of events for families of patients with AE.
With support from Florence Forth participants and donors, the AE Alliance promotes collaboration in clinical care and creates community for patients, families, and caregivers so that no one faces AE alone.
Improving Access to Care
Access to high-quality medical care is increasingly a challenge for too many Americans. The problem is especially acute for patients with a rare, often undiagnosed disease. The AE Alliance began the first Clinicians Network for AE experts, now with over 100 medical experts. Funding from the first Florence Forth helped launch the Duke Children’s Autoimmune Brain Disorders Clinic, one of the first multidisciplinary clinics focused on autoimmune encephalitis and other related diseases. Finally, we funded a clinical trial at Mayo Clinic to test treatment options to further improve access to best available treatments.
Educating Medical Professionals
The first obstacle to gaining access to care is obtaining a proper diagnosis. The second obstacle is treatment options. Our strategy is to talk directly to doctors who are likely to see patients. We have organized medical Grand Rounds, or talks, at hospitals across the country. We send trained experts and family members to conferences to share information. And we have organized several symposia to bring experts together to advance shared understanding of the disease.
We often hear that a patient was diagnosed because a family member or a friend read a story of a patient with similar conditions. These parents and loved ones will sometimes bring the article directly to the doctor and asks them to evaluate. The best-selling book Brain on Fire by Susannah Cahalan helped start the AE Alliance 5 years ago. More recently AE has been featured on CNN, BBC, local news stations and medical mystery shows. For a disease where early diagnosis and rapid treatment dramatically increase, creating broad awareness is critically important.
Instead of throwing a birthday party, let’s all celebrate on March 3 when we gather again to race, run, or walk for good. Thank you for sustaining us on this journey. Together, we are making a difference in the lives of AE patients and families.
Registration open. Prices increase in early January.