The Wizard of Narcolepsy

by julie on October 14, 2010

Surely I’d set myself up for disappointment. There was no way anyonecould live up to the image I’d created in my head. Like the Wizard of Oz, this Wizard of Narcolepsy was sure to disappoint.

I sat in a cushy red and gold chair, facing the front of the ballroom, along with about 200 conference attendees. At the front of the room, behind a podium, stood a lean man dressed in a formal European style suit. His face glowed blue in the light of the computer screen facing him. There was a prolonged moment of silence as he clicked the computer keys to begin his slide presentation. So, this was him… 
 
Saturday morning of the Narcolepsy Network conference began with a Keynote Presentation by preeminent narcolepsy researcher, Dr. Emmanuel Mignot of Stanford’s Center for Narcolepsy.
 
A 2007 New York Times article described:
“Dr. Mignot is optimistic about cracking the immune-system connection in narcolepsy soon. ‘I don’t care actually even if it’s going to take a long time,’ he said. ‘I’m ready to cross deserts.’
Dr. Tononi said Dr. Mignot was ideally suited for that, adding: ‘This is what is good about Mignot. He is relentless.'” (full article here)
I never forgot this description of a relentless scientist ready to cross deserts for narcolepsy.
  

Towards the end of his presentation, Dr. Mignot discussed one of his current projects called the Immunochip Project. He explained that this line of research should help identify what is causing the autoimmune attack in the brains of people who develop narcolepsy.

As he spoke about this project – my throat automatically clenched and my eyes filled with tears. Dr. Mignot’s voice fell away; the slides, the red and gold chairs, the chandeliers, the entire ballroom.  Everything disappeared for a moment, as I acknowledged to myself, “I am partially responsible for this. My marathon fundraising efforts helped make this research possible.”

For a while, it was unsure if Dr. Mignot would be able to pursue his Immunochip project as he did not receive the funding he had originally hoped for from the National Institutes of Health (NIH). When Wake Up Narcolepsy learned of this urgent matter, WUN founder Kevin Cosgrove vowed to do everything possible to help move this important project forward.

Subsequently, WUN donated $25,000 to Stanford’s Center for narcolepsy, combining with a few other private funding sources, to total $100,000 which allowed the Immunochip project to move forward at a minimal level (although more funding is still needed).

Hearing Dr. Mignot discuss this project before a room full of people was a moving experience. It made the whole “I’m running a marathon to raise money for narcolepsy research” very real. Sure, there have been other markers of success. On marathon day – I received a yellow and blue medal and a silver cape. Since then, I’ve received an overwhelming abundance of congratulations and praise from many people. Yet, at 9am this past Saturday, I received the greatest prize of all – in the unlikely form of a PowerPoint slide presentation.

Later that day, I got a chance to meet Dr. Mignot.  Strangely, this Wizard of Narcolepsy was everything I imagined and more. He has his feet on the ground and his eyes set on the stars. The thing that amazed me the most about Dr. Mignot wasn’t part of his presentation at all.

Over the course of the day, I noticed that Dr. Mignot was approached by many people in the hallways, side-tracking him from where he was going. Yet, he treated every single person with dignity and respect.  He was never too busy or too important. He looked each individual in the eye and listened.  

Dr. Mignot is an integral part of our narcolepsy community and I look forward to reporting back as his current research continues towards cracking the autoimmune connection.

Check back soon for more updates about the rest of the Narcolepsy Network conference!

{ 6 comments… read them below or add one }

dontdream October 14, 2010 at 9:07 pm

You are completely correct about Dr. Mignot. At our first conference he just sat down at our lunch table, and there were other doctors at the table that wanted to talk to him but he made sure to keep Jason and I in the conversation and ask Jason for his opinion. He always makes the time even though usually Mali is chasing him out of the building because he is running late to get somewhere!

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Tricia October 15, 2010 at 11:22 am

What an interesting perspective. DR Mignot has accomplished so much for PWN. He is overextended on so many levels, but he doesn't seem to wear the look of fatigue quite like I do. Hearing him speak was truly an honor. Kudos to WUN for all your fundraising endeavors.

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servane briand October 15, 2010 at 7:02 pm

Julie,
Congrats on running the Boston Marathon. I am extremely impressed and will follow your efforts. You are being a great role model for many in and outside the narcolepsy community. I am very moved by what you say about Dr Mignot, since I know how true it is (disclaimer, we have been married for many years now…) and I and his two children will continue to support him everyday in his quest for understanding narcolepsy, improving the lives of narcoleptic, and eventually finding a cure; again, bravo for your accomplishments and happy running (our younger son is also a runner!)

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Kim November 1, 2010 at 4:17 pm

Hi Julie,
Having had the awesome opporunity to have Dr. Mignot as John's doctore, you have nailed it. He is a very modest man who always has time for the "the little people." As busy as he is, he always has time for us either in person or over the phone. I am thrilled you had the opportunity to meet him. I am also running Boston next year for WUN and all my fund raising will be going to Stanford. If anyone is going to find a cure it is Dr. Mignot. Hope all is well. Keep up the great work:) Kim

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Sasha Louisa November 9, 2010 at 11:36 pm

Julie,
I can understand why you are advocating for us PWN, but do you really think that our condition is a priority? I know that narcolepsy has held me back so far from my full potential, but I'm studying now to be a doctor and there are people in far worse conditions that could use $100,000 to SURVIVE. I am grateful for the knowledge that the science community has uncovered about narcolepsy, but perhaps we could wait our turn. Life is rough for us, thus we can better sympathize with the pain of those with more severe disease.

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Jacqualeah November 10, 2010 at 5:00 pm

Julie, as a non PWN I appreciate what you are doing and HAVE done for those suffering from your similar conditions. Working for an attorney that suffers from narcolepsy has given me a greater appreciation for my own abilities since they arent hampered by narcolepsy. Dont worry about Negative Nancy (aka Sasha Louisa). She is one person. Take pride in what you have done and what you have dedicated your life too. At least you know that what you have done by merely scratching the surface will change the experience others will have with narcolepsy. Even if you yourself dont get to experience the advances in science at least youve dedicated your life to helping others.

P.S. Narcolepsy can put you in a life threatening situation. Dont you read this blog regularly Ms. Medical School? Julie got lost in DC and let me tell ya YOU DONT WANT TO GET LOST IN DC IN THE DARK! Good thing she SURVIVED that!

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