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Shannon Jeffords Burkoth
- Mar 22, 2018
- 3 min
Advocacy has become my drug of choice, and I am addicted!
Drug addiction and abuse have been a hot topic lately. Personally, my body does not metabolize medication very well so I am left with very few options to treat my conditions. After failed treatments for narcolepsy and more health problems, I became disabled at the young age of 35. This was not the plan and I was mad to say the least. I played the victim to my illness for too many years than I like to admit. In 2016, I received an email from the Narcolepsy Network (NarcolepsyN
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Shannon Burkoth
- Dec 13, 2016
- 4 min
“I know I’m Different From Other Kids” - A Conversation With My Daughter. - Guest Post by Claire Cri
I met Claire and her daughter Mathilda at the Narcolepsy Network conference this past October in Orlando, FL. We sat together for breakfast one morning. Claire's daughter Mathilda is ten years old and she has Narcolepsy and Cataplexy, just like me. It is interesting to see the narcolepsy journey from both a child's and parent's perspective. You can read her blog anytime at clairecrisp.com. Claire is also a Rock Star advocate for her daughter and the narcolepsy community...Tha
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Shannon Burkoth
- Nov 16, 2016
- 6 min
The disappearance of "Me"
So now its time to get personal. Ive written a few blog posts now, basically reviews on some recent events I've been able to attend on Rare Disease and Narcolepsy advocacy. I feel empowered to tell my story. Life is not easy sometimes, we all have our burdens to bear. I truly believe God uses these moments in our lives to help others along the way. This post is really personal for me, but I write it with a vulnerability to allow others to see hope. Here we go... I have always
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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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