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Shannon Burkoth
- Oct 31, 2016
- 2 min
Meet Evan, he has a #RareDisease Polymicrogyria (PMG), and his Mom, Tara, is a Rockstar Advocate!
I met Tara at the Global Genes Summit in sunny California last month. We met in the elevator when we first arrived at the hotel. She seemed pretty nice, we exchanged pleasantries, found out we were both there for the summit, she was there as a parent advocate and I was there as a patient advocate. We headed off to our rooms. We met again the following day at one of the breakout sessions at the end of day 1 and started chatting about one another's lives, kids, why we were the
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Shannon Burkoth
- Sep 27, 2016
- 2 min
Global Genes 5th Annual Rare Disease Advocacy Summit
I had the honor of attending Global Genes Rare Patient Advocacy Summit this past September and it was inspiring! I first became familiar with GG at their Narcolepsy Meet Up Tour in Chicago this past July, where I was invited and encouraged to attend this summit. Because the Meet Up Tour was so successful, I decided to travel to California for this event as well, and I am glad I did! There are over 7000 Rare diseases most of which have little to no treatment available, includi
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Shannon Burkoth
- Jul 27, 2016
- 1 min
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
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