Wow, just like that…, 2020 is here and my family and I find ourselves preparing for another Florence Forth and AE Alliance Family weekend. Approximately 20 of our family and friends will make the trip again this year to Durham from all over the country for Florence Forth, Saturday, March 7th. I can’t wait to see old friends and meet some new ones and to hear the inspiring stories of many who are battling Autoimmune Encephalitis.
As we prepare to go, I can’t help but reflect on the past 10 years since our daughter, Emily, was diagnosed. At that time in 2010, there were very few resources to help patients and families navigate this awful disease. My wife Grace and I were very alone with nowhere to turn for help. Most medical professionals had never even heard of AE before.
A lot has happened since 2010. One of the biggest turning points was the founding of the Autoimmune Encephalitis Alliance in 2012 by the McDow and Egger families. Because of their efforts and many volunteers joining in the 8 years that followed, we now have a thriving community of patients, families, caregivers and medical professionals connected with common goals.
Florence Forth is not only the major fundraiser we have, to support the growing needs of the AE Alliance family, but it is also a reunion of sorts for us, where we get to see family and friends we have made over the years. Florence Forth is named for Florence McDow, a little girl of only 6 years old who lost her battle to Autoimmune Encephalitis on March 4, 2012. Her growing legacy is the many people who have now been helped and inspired by her story and the over $300,000 that has been raised to date helping the AE Alliance to reach more and more people suffering from AE.
The AE Alliance staff and website help connect families with doctors who have experience treating the disease. Our Medical Advisory Board consists of world-renowned clinicians, leading researchers and other experts pressing forward on treatment protocols, establishing a conduit for putting forth sound medical information to the public. We have recently begun establishing support groups and have expanded the AE Alliance Family weekend to include programs for patients and families.
Thinking back as I have to 2010 and how lost we were as a family trying desperately to find help for our daughter, I am full of hope and pride in the accomplishments and strides the AE Alliance has helped to make in the treatment of the disease and in creating an incredibly supportive place for caregivers, families, and patients. But, there is so much more to do. Please help us by donating directly to the Alliance, or by signing up for Florence Forth. You can also start your own fundraiser!
I invite you to join me and our family and friends in Durham for Florence Forth and the AE family weekend March 6 – 8. I hope to see you there!
AE Alliance Board Member and Emily’s dad