• Shannon Burkoth

2016 GG/NN Narcolepsy Meet-up Tour


I was extremely fortunate to attend the Narcolepsy Meet Up in Chicago, IL, in early July. I was diagnosed with Narcolepsy and cataplexy in 2009, symptoms date back to my high school days though. I was especially looking forward to this meet up because a friend of mine was just diagnosed this past February and she was able to attend as well. We both benefited tremendously from this event! The Global Genes staff were extremely caring, kind, professional, organized and fun. The speakers were superb and the Q & A time was very helpful. We were able to hear from both a sleep neurologist and a sleep psychologist, some of the best in their fields. We heard about what is new and changing in the field of sleep medicine. We also heard about advocacy, support groups, and educational materials that are available now through Global Genes, Narcolepsy Network and Wake Up Narcolepsy. I think my favorite part of the meet up was at the end where all the pwn got together in a circle and shared their stories. For me, I was able to identify with at least one aspect of each story told, and I didn’t feel so alone. I made some great connections here and look forward to keeping in touch with new friends! A huge thankyou to Global Genes and the other organizers of this event, it was truly an uplifting experience!

#narcolepsy #GlobalGenes #NarcolepsyNetwork #RareDisease

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