We put on the first symposium for Maxwell’s disease in late November and it was an overwhelming success. The many late nights of planning all came to fruition in the best way possible! The experience of having 50 brilliant scientists, from all over the world, collaborating on the cure for SLC6A1 was entirely surreal. Each speaker was a powerhouse of information and ideas. The hotel electricity went out 2 hours into the event and the scientists didn’t miss a beat. The discussion continued seamlessly in the dark; albeit, a more intimate setting. Every attendee commented that it was one of the most productive conferences they had ever attended.
SLC6A1 Connect had a booth at the American Epilepsy Society annual meeting following our symposium. The booth was armed with an extensive candy bar designed to lure in unsuspecting scientists. Similar to a Venus flytrap, I captured each unassuming scientist as they reached for a Snickers and barraged them with questions. Below is a picture of Mark, me and the woman who found the gene, Gemma Carvill.
We had plenty of time for fun as a family including the zoo, the French Quarter and eating too much Cajun food. Riley took a nasty spill and caught a rug burn on her nose (poor baby) and Maxwell loved the warmer weather.
The trip went by too fast. We were waiting for our flight along with a group of nuns. I approached them and asked if they could pray for healing over Maxwell. This group of women were so kind and caring, Maxwell was immediately surrounded by love. They lifted our family in prayer and asked for the Great Physician to heal Maxwell. They even tweeted our GoFundMe to their 40,000 followers! It was a perfect ending to a perfect trip.
Ann Cozad Jansson · December 15, 2018 at 8:57 pm
I am so proud of everything you and Mark are accomplishing for not only Max, but for all of the children who need a cure!!!