August 23 was the first local patient day here in Colorado hosted by the University Hospital of Colorado. Dr. Bennett and his staff did a great job! It was nice to see new and old NMO family. The Guthy Jackson Foundation helped as well to get this event going. The goal for the local patient days that will happen in five other locations is for patients and caregivers to learn about NMO and to see what the research teams are finding out for any new medications coming down the line. It also so NMO patients can meet each other and help advocate for this disease. The Guthy Jackson Foundation will still hold the national patient day in Los Angeles March 4th 2015.
For this first patient day there was a total of 62 patients and caregivers total. Over half of them this was the first patient day that they have attended. Dr. Bennett was the main speaker for patient day. For people who don’t know him he works with the Guthy Jackson Foundation helping find a cure for NMO he also sees NMO patients at the University Hospital of Colorado. The also had a pediatric NMO doctor there Dr. Schreiner talking about the difference between adult NMO patients and pediatric. Dr. Bennett gave some encouraging news that there were three new medications that they are researching for maintenance drugs for NMO. We also had guest speakers about nutrient, applying for disability, and how to become advocates for NMO. I learned a few new things going to the patient day here in Colorado. But why I really wanted to go that day was to see my NMO family that I always see every patient day and to meet new NMO family members. It is so nice to be around people that truly understand what you are going through and also really care how you are doing. There is a special connection with NMO patients around the world we are not just friends we treat each other like family. I just love when we can all get together and see each other!