Remembering Sharon Smith: A Tireless Narcolepsy Advocate and Dear Friend

Sharon Smith (far right) with NN friends, NN Conference 2010

On Friday, June 28, 2013, the narcolepsy community lost a quiet hero named Sharon Smith. Sharon passed away after fighting a prolonged illness. She served as President of the Board of Trustees of Narcolepsy Network and dedicating her life to supporting the narcolepsy community and volunteering for many research projects towards finding a cure.

It’s hard to explain how someone I only saw a few times a year became family, but Sharon was family. I met her in 2008, at my first Narcolepsy Network conference and she quickly became a friend to me and my family. Sharon was an integral part of my support system – a loyal friend, keen researcher, skilled writer, hard worker, dedicated leader and forever a fighter.

We last corresponded in May, when Sharon emailed me to congratulate me  on my book award. She was fighting a courageous health battle of her own, but took the time to send me a positively-spirited message of hope. That was Sharon.

Sharon always saw the silver lining in everything,” reflected close friend and fellow advocate, Mali Einen, “She was a good friend and I will miss her.”

The entire narcolepsy community will miss Sharon. We are forever indebted to her for her tireless dedication and positive spirit. On behalf of so many, I send my condolences and love to her family and friends.

To honor Sharon, donations can be made to Narcolepsy Network, 129 Waterwheel Lane, North Kingstown, RI 02852. View Obituary

“A hero is an ordinary individual who finds
the strength to persevere and endure
in spite of overwhelming obstacles.” 

-Christopher Reeve

Sharon receiving award at NN Conference 2010


  1. Emo on July 1, 2013 at 4:05 am

    A good friend indeed! I admired her keen insight. She most often she saw through all the stuff and nonsense and pinned down the truth. Wrote with precision. She always listened carefully to, and respectfully considered anything you had to say. A good supporter of the old Nlist and the associated e[N]dless supper.

    Worked too hard for us, though.

    • julie on July 1, 2013 at 4:06 pm

      Thank you so much for your kind comment. Sharon was so respectful and wrote with incredible precision. We will miss her so much!

  2. Alex Withrow on July 1, 2013 at 9:55 pm

    What a fine tribute post here, Julie. I’m sorry you lost a great friend in Sharon. Sounds like her tireless work in your community will be regarded for many, many years.

    • julie on July 1, 2013 at 11:35 pm

      Thank you, Alex. She was an amazing woman. I wish you would’ve had an opportunity to meet her.

  3. Matt Landy on July 11, 2013 at 11:43 pm



    Once again, you have hit “the nail on the head” when you wrote about what to say & what not to say to an individual diagnosed with Narcolepsy….

    Unfortunately, in my opinion, the time has come for states and the Federal Government to require a simple yes or no answer to all applicants seeking licenses , such as driving, flying. etc. and not just commercial transport.
    We with Narcolepsy have many rights, but it is time we recognize that we have responsibilities as well, one such responsibility is not to put other people in danger.

    You have national recognition as a spokesperson for all of us and your endorsement of this position would be very powerful and meaningful for every one.

    Matt Landy

  4. Stu on August 25, 2013 at 10:51 pm

    I spent MANY hours on the phone with Sharon while developing the Narcolepsy Network. She was so full of questions about the website, and I was full of questions about N (I’d only been diagnosed a short few months before).

    When she spoke about some of us that REALLY have the struggle, she spoke with an unmatched degree of passion. She changed my life more than words can say. It was during my own discovery of ‘not being alone’ that I was introduced to Sharon. It wasn’t luck…it was a real blessing.

    For being the example of compassion on how we should treat each other, we owe you endless gratitude. Thank you, Sharon. You are missed.

    • julie on August 26, 2013 at 4:55 am

      Thank you so much for this wonderful comment, Stu. I’m so glad you had a chance to learn so much from Sharon too. She is certainly missed. Thanks again, Julie

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