Dr. Mignot Speaks to Narcolepsy Friends and Families in Boston, MA
Friends of Narcolepsy Network, Wake Up Narcolepsy and the Stanford Center for Narcolepsy Research came together recently for a one-of-a-kind event featuring Dr. Emmanuel Mignot’s latest narcolepsy research advances. On Sunday, June 10, 2012, over one hundred people came to hear Dr. Mignot speak about his narcolepsy research. Nestled in a crowded, but well ventilated conference room at Massachusetts General Hospital, the event brought together a diverse group of friends, family, and patients whose lives have all been touched by narcolepsy. For some, it was a reuniting of familiar faces in the small narcolepsy community, as it is a relatively uncommon sleeping disorder. For others, it was the first time ever meeting others affected by the condition.
The gathering also included a session hosted by Mali Einen, Dr. Mignot’s research coordinator, who spoke about living healthy with narcolepsy. Her tips and anecdotes were helpful to so many dealing with excessive sleepiness and other narcolepsy symptoms on a daily basis. “Over the many years that I have worked at Stanford’s Center for Narcolepsy I have talked with so many people with narcolepsy (PWN), parents, loved ones and doctors about narcolepsy. It is at meetings like the one in Boston where I truly feel the reward and all the love that is returned to me for my hard work,” Mali commented.
Also at the event, there was an opportunity for people in the audience to participate in Dr. Mignot’s genetics research studies. As a result, 32 people with narcolepsy or hypersomnia donated their blood to future clinical research endeavors that include determining the mechanism that causes narcolepsy.
This was the first time two non-profits came together to co-sponsor a narcolepsy event. Narcolepsy Network, founded in 1986, and Wake Up Narcolepsy, founded in 2008, are the two leading non-profit organizations committed to the narcolepsy cause. Seeing leaders from both organizations working together to host such a well-attended event reflects the enthusiasm that the community leaders have for the cause. Hopefully this type of collaboration will foster increasing narcolepsy awareness and improve narcolepsy patients’ quality of life.
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Date Created: August 7th, 2012
Last Updated: August 7th, 2012