My sister, Vicki Spray, and I had the opportunity to attend the symposium this year together. This was a thoroughly enjoyable time. This article is to share highlights.

It started out Friday morning with a free acupuncture session, a relaxing and rejuvenating experience. On Saturday, I had the opportunity to participate in an exercise diagnostic at a nearby Sports Medicine facility. 

On Sunday morning, I had the privilege of providing blood that will be used for a variety of reasons one of which is to help increase knowledge of how to use a certain machine.

I feel the top highlight of the whole weekend for me was making personal connections. I got to know patients and their family members, both from the U.S. as well as other countries. I also made connections with researchers and clinicians. During our mealtimes I took the opportunity to sit with different people and get to know them more personally. My sister and I sat with researchers from Spain at our first evening meal. On Saturday all participants took a break from the formal scientific talks and had an excursion out to a park and then a multi-course meal with wine tasting. At this meal I sat with a group of six young individuals who are working on their doctoral degrees. This was enjoyable getting to talk to these students and hear about what they are working on and share my own story of navigating this disease. During one lunch I sat with a group of patients all of whom were from a country other than the U.S. Although a  language barrier definitely slowed and limited the communication they all did graciously use their limited English and ‘Google Translate’ was helpful. Some of these patients I had met at a previous symposium. It was a joy to reconnect.

It wasn’t only just at meals.  It was very rewarding to have significant conversation with patients at other times. One occasion stands out when I sat with Rudiger, a German speaking patient. I am super grateful to Diana for sitting with us and translating.

Throughout the weekend we got to hear a number of informative talks. Some of the time just the patients and family members were together in a separate room. Some of the time everyone (patients/carers/clinicians/researchers) were together for these talks. Very educational.

All in all this was a very enjoyable rewarding experience. I am super glad I was able to attend. I look forward to the next symposium.