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.
“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)
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.
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!