From playing the victim to becoming a survivor, this is my journey with narcolepsy and rare disease. I choose to fight, to raise awareness, end stigmas and to hopefully help others along the way...

12.13.2016

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...

Story #2- Christmas Tragedy turned Miracle for the Soderholm/Jeffords Family!

It was Christmas day, 2006, my Dad called to give me the news, there was an accident. My 10 year old cousin Allie was playing with her little brothers and cousins outside of the nursing home where they were visiting family, and the unthinkable happened. The kids were crawling through a tunnel of solid ice heaves at the shoreline of Lake Minnewaska, in Glenwood, Minnesota (thats what they do up north...

11.29.2016

I have a few stories I would like to share about miracles I have experienced or witnessed, so I hope you can hang in there with me! We will talk about some cool stuff...I promise, keep reading!

Story #1- My Adventures in fertility (or infertility,lol)

Did you know that 1 in 10 couples will have problems with infertility? I didn't know that when my husband and I decided to start trying. I knew of a few women who were having difficulties, but had no idea how many were actually or...

11.16.2016

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...

10.31.2016

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...

10.26.2016

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

9.27.2016

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, includin...

7.27.2016

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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Melissa, you're Famous!!! This is my sleepy sister!
Meet Shannon
Hi! My name is Shannon and I am a rare disease advocacy professional. I was diagnosed with the rare disease narcolepsy with cataplexy in 2010. No, it's not at all like you see it portrayed in the movies. If you'd like to know more about narcolepsy you can visit the tab in the menu above.
My blog is about me, my life with narcolepsy, my adventures in advocacy and doing what I can to make a difference to help those also affected by rare disease and illness. I am passionate about this cause as you will hopefully see in the stories written here. I draw my hope from my faith in God.
Thank you for reading and feel free to leave a comment now and again. :)))
Wishing you all big smiles, lots of laughter, and love for life no matter how it looks!!! 

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