• Shannon Burkoth

2016 NN Conference in Orlando, FL & More


WOW! What an amazing time I had this past weekend in Orlando at the annual Narcolepsy Network Conference as the sleepy people took over Walt Disney World! We stayed at the B Resort & Spa. Beautiful hotel and comfy beds (kind of a must). It was sunny and 85 degrees, a nice getaway from cloudy and 50's back here in Wisconsin. Back to the conference...AMAZING! Sleeping Beauty was our special guest for the welcome dinner Friday night, great photo ops! The phenomenal speakers and breakout out sessions were great! MY neurologist was there and presented 2 sessions, Dr. Thomas Freedom you ROCK! Some highlights included NN has initiated an alliance with the Society of Anesthesia and Sleep Medicine (SASM) to create recommendations for anesthesia on people with narcolepsy, something that does not currently exist. This is exciting news since it is such a big issue for our community since our brains sleep cycle 24 hrs a day. I was excited to see so many youth embassadors here this year, commited to raising awareness in schools, stepping out and being bold in advocacy at such young ages, these young people will achieve so much for all people with N and N w/C. Narcolepsy Africa Foundation traveled 8000 miles to be here and inform us of their non-profit that was just formed and the challenges they are facing, Anne-you inspire me, we will keep in touch! We also received updates on diagnosis and treatments, service dog demonstrations, medication panels, professional panels/entrepreneurs who have N/N&C, how to advocate in your community and in schools, how to ask for accommodations necessary both at work and school, yoga sessions, art expressions, and SOOOOOO much more! My friend Kendra Davis from Global Genes was there, Nicole Jeray-Ladies Pro Golfer is so much fun and raising awareness with "Swinging for Sleep", The awesome staff and Board of NN, WELL DONE! I had so much fun volunteering as a room monitor and introducing speakers, Brianna Espana-loved working with you! Eveline and Sarah- so much heart went into this event, thank you for your dedication and countless hours you put in for all of us!!! The conference was an absolute blast and I am absolutely exhausted!

Sunday evening I enjoyed having dinner with my Aunt Pam, Uncle Mike, Cousin Shane and his family. They drove over an hour to hang out with me while I was in town...thank you and love you all! Brooke and Braxton, so glad I finally got to meet you, you are awesome and funny! I feel so fortunate that I have been able to travel these last few months to these conferences and also visit with family, it has been an absolute joy!!! In September, when I was in California, I also got to visit family, My Uncle Larry, Aunt Cindy, Cousin Brad and his family. They also drove a distance to get me, feeling the love! We had a lot of fun, Sarah and Lacey, so glad I got to finally meet you as well, more awesomeness in the family! Lacey reminded me so much of my daughter Paige, sassy but sweet! Paige (my 13 year old) has been rather jealous of my recent travels, I just said hey...I'm finally getting some perks for having Narcolepsy, lol! Now that conference season is done, my posts will be a lot more personal.

I hope to take my life experiences, health challenges and what I've learned and help others. There is a reason that God has placed me where I am, it has not been an easy road but I look forward to the path ahead of me!

Please post my blog to help me get started on this new journey. Be Blessed!

-Shannon

#narcolepsy #Family #NarcolepsyNetwork #RareDisease

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