Over 150 patients and family members affected by autoimmune encephalitis gathered in Durham, NC, for a luncheon on March 5. Known simply as the “Family Lunch” the event is a chance to meet others affected by autoimmune encephalitis, laugh, celebrate, remember those lost to the disease, and share stories both privately and publicly. Having grown in attendance in each of the three years, many count the lunch as a highlight of their annual calendar. Several attendees voiced their desire to help and connect with others, as much as they looked to finding solace for themselves. This year’s event was held at The Pit and the highlights went well beyond BBQ pork and tofu, and hush puppies. After a welcome and introduction of the Autoimmune Encephalitis Alliance Board, the hosts highlighted some of AEA’s accomplishments including: personally communicating on a near-daily basis with patients and caregivers; generating weekly posts about autoimmune encephalitis and patient profiles; adding physicians to the “Clinicians’ Network;” beginning work on a new website to better serve our community; and hosting successful fundraising events like the Florence Forth road race. The hosts also gave a glimpse into the goals for 2016 including: promoting the release of the movie, Brain on fire, based on Susannah Cahalan’s New York Times best-selling book;providing better access to research; and generating a patient-centric network so that families can communicate directly with one another.
The highlight of the lunch involved members of the group coming forward to speak publicly about their experiences with AE. Among the many poignant moments of the day involved Dana telling the story of losing her daughter Jasmine three years ago, and how she works tirelessly to keep her daughter’s memory alive. Dana then brought her grandson (Jasmine’s son) in front of the group, and said that looking at her grandson is what makes her family’s mission and healing possible. It was incredibly touching. Several kids and young adults shared their experiences and their gratitude to the medical community, AEA, and their families. Joe, a true gentleman from Virginia, gave a testimonial on his two separate battles with encephalitis reminding all of us that the disease can attack at any point in life. His positive message was inspiring. Other speakers included Jeff and Hailey from PA, Luke from SC, Rama from CO, Katy from NC, Emily from PA, Erin from NJ, Mandy and Madison from NE, Lem from NC, and Daniel from NC, who shared their struggles with the disease from the points of view as teenagers, children, young adults, adults, and parents.. Chris, a teenager from Ontario, Canada who had driven with his family to attend the event was eloquent in his hopefulness for the future, and had the room give a round of applause to siblings and parents upon whom so much of the burden of the disease falls. After all of the speakers, the group enjoyed lunch together and reconnecting with friends made through the Autoimmune Encephalitis Alliance. We look forward to Florence Forth and another gathering at the Family Lunch next year.
The Family Lunch was started three years ago by Will and Leslie McDow, who lost their six-year-old daughter, Florence, to the disease, and by Helen and Daniel Egger whose son, Sasha, has autoimmune encephalitis. The Family Lunch is one of the events surrounding the Florence Forth road race held annually in Durham, NC, on the first Saturday in March. The Autoimmune Encephalitis Alliance is grateful for the generosity of The Pit in hosting the event and especially Liz Henderson and staff for their graciousness. AEA is also thankful for Carrie Painter, a volunteer with AEA, whose planning and day-of coordination made the event possible. The Family Lunch in free of charge to patients and their immediate families. Others who would like to attend may be able to do so for a nominal charge. Email [email protected] for details as RSVPs are required. Click on these links to read more about Florence Forth and the Family Lunch.