2nd Annual Strides Against Narcolepsy Virtual Run/Walk July 12-14

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I am pleased to announce the 2nd Annual Strides Against Narcolepsy Virtual Run/Walk to raise funds for narcolepsy research will be held July 12-14.  I’m even more pleased to announce that I’m partnering with Wake Up Narcolepsy, an organization whose mission is to support narcolepsy awareness and research to find a cure.  They have created a page for the purpose of collecting donations for this year’s event.  Funds raised are to be distributed to leading research institutes in the U.S. and Canada.

Instead of forcing everyone to complete their run/walk in one day, I’ve decided to dedicate a weekend to the festivities.  After all, we cannot be sure our symptoms will allow us to participate on a particular day.  This way, participants have more time to accomplish their goal.  So, how does it work?

1. Like the Facebook page.

2. Post about why you’re running or walking.  If you prefer to remain anonymous, you may send your story to stridesagainstnarcolepsy@gmail.com.  I’d love to see more photos this year!!  Bonus points to those who submit videos.  You never know, I just might have an incentive up my sleeve that I plan on sharing soon. 😉

3.  Make a donation and/or collect donations from others.

4. Spread the word!  This is your chance to raise awareness about narcolepsy and a chance to help raise funds for research.

5. Pick a distance to run or walk, even if only around the block.  Every distance counts!  Remember, you have three days to get your run or walk completed!  Then, email me or post on the Facebook page and let us know how it went.

For those of you who have not heard about the event, it was inspired by the story of a six year old (she’s now seven) diagnosed with narcolepsy with cataplexy after having pneumonia.  Her mother, Chris, shared her daughter’s struggles, and she shared her worries for her daughter’s future.  In 2013, they walked with members of their community and raised over $1300 to send to Stanford Center for Narcolepsy.  This year, they are at it again!

Chris is a mom on a mission – raise funds to help find a cure for this debilitating, disabling condition that not many people understand.  Moved by Chris’ and Makenna’s story, I was moved to create a larger event that allowed more people to take action.  Thus, the first virtual run/walk was  born.  You can read about my day  and watch the video I made while on my run here.

There are people who take action and people who choose to let others take action.  Which type of person are you?  “See” you at the run/walk!

Comments

  1. Brynishia Robinson says:

    I am a 32 year old wife and mother of 6 beautiful children and I have Narcolepsy! It has been challenging but with God I recognize that all things are possible. I am considered fully disabled I have been diagnosed with Malignant Narcolepsy with Cataplexy! I have a lot of support from my husband and my family. They are amazing and I recognize that everyday is a new journey for me!!

    • admin says:

      Each day really is a journey with narcolepsy with cataplexy. Even with treatment, I still have little warning sometimes when symptoms decide to derail my day. I’m happy to hear you have a great support system. I do as well! It makes a huge difference!

  2. I ‘m excited to pound the pavement for research! I was recently diagnosed but have been living with N for years. I really miss the days when I could run every day for miles. I still live for the few great runs that I get in when I can, so you can count on my miles for funding research!

    • admin says:

      Hooray!! By the way, I love the items in your Zazzle shop! I may be in touch with you soon about an idea…

      • Hoping to recruit my triathlon family members and my cross-country running buddies. If I get my family on board the problem won’t be the mileage – it will be finding someone to fund all those miles! . Guess we better get started! Any pointers to get companies and bigger fish involved?

  3. TiShunda Ingram says:

    I am a 34 year old mother and finacee who was told 3 1/2 years ago that I have narcolepsy. I went in for a study because I was falling asleep while driving with my kids in the car and my doctor sent me to get checked out. Since then I have triedto work but it got hard for me because I was falling asleep on the job and was getting wrote up. I call them black outs because at times i wake up on the floor when all I remember was i was cooking. Mine is pretty much bad I have to take naps in order to drive anywhere to make sure i dont fall asleep behind the wheel or black out when I am out. Its a hard struggle for me since I decided that I wasnt gonna let the doctors keep changing my meds because nothing was working for me and I am on enough meds. I continue to live my life but have so many limits to what I can and cant do. With the help of God and my regular doctor I have not had another accident since I have put myself on limitations. Just wish I could work a job and not get fired for blacking out.

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