Recently, James and I were invited to participate in an NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease Patient Council Meeting sponsored by Amgen at their headquarters in Deerfield, Illinois. It started out with an afternoon of mental health wellness. The key message was to take good care of yourself and remember to focus onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. YOU.
There was mention of utilizing yoga and other meditation devices to keep your spirits in a positive space. Dr. Al Freedman shared a story of his son Jack who was battling a rare disease. His son had spinal muscle atrophy. Dr. Freedman definitely knows what having a rare disease in your life looks like. He then opened up the floor for questions and we were able to share stories with other participants. It was really nice to be able to meet up with a few friends before going to dinner. We had a wonderful dinner at Saranello’s a local establishment with delicious food. I was thrilled to be able to spent some time getting to know Candis, from their marketing specialist team.
The day of the conference, we were able to meet up with each other and have a nice breakfast. We then separated into different groups and we were able to share some ideas with Amgen regarding upcoming marketing materials. We felt heard by Amgen about what was important to us a patients and caregivers. We thank Amgen and Spectrum for making all the arrangements for us and for the opportunity to see old friends and make new ones. We are honored and blessed to be able to participate in the “ Learn More Together Summit!”
By Andrea Mitchell, Director of Blind Resources and Executive Board Member
