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Narcolepsy Community Event


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#1 VanSnoozen

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Posted 13 May 2012 - 02:39 PM

NARCOLEPSY COMMUNITY EVENT

NARCOLEPSY RESEARCH UPDATE WITH DR. EMMANUEL MIGNOT

Who: People with Narcolepsy (PWN), their family and friends & Researchers/Clinicians

When: SUNDAY, JUNE 10, 2012 from 1:00 PM — 5:00 PM

Where: MASSACHUSETTS GENERAL HOSPITAL – BOSTON, MA
Main Campus, 55 Fruit Street, Boston, MA 02114
Yawkey Conference Room 4820

Why: Join us in learning about Dr. Mignot’s narcolepsy research. Dr. Mignot is the Director of the Stanford Center for Narcolepsy Research. He is joined by his clinical research coordinator, Mali Einen, who will coordinate participants and also speak.

Participating in Dr. Mignot’s clinical research by providing a blood sample is vital to advancing current knowledge. If you have narcolepsy, this is your opportunity to contribute towards steps leading to better, more effective treatments and someday, a cure.

Agenda: 1:00-1:30 pm Introductions by NN and WUN
1:30-2:30 pm Dr. Mignot’s Presentation: Narcolepsy Research Update
2:30-3:00 pm Q & A with Dr. Mignot*
3:00-3:30 pm Break & Snacks*
3:30-4:30 pm Mali Einen Presentation: Optimizing Quality of Life for PWN
4:30-5:00 pm Informal Gathering*
*Times to participate/ give blood for Dr. Mignot’s research – or arrive early to do so (12-1 pm)

Food: Light snacks provided by Narcolepsy Network (NN) & Wake Up Narcolepsy (WUN)

RSVP to: Mali Einen at einen@stanford.edu or 650-721-7550
*Pre-Registration for Research Participation is strongly encouraged!

Directions: www.massgeneral.org/visit/parking/
Fruit Street (Main MGH entrance) is off of Cambridge Street
Park in Yawkey Center Garage
Parking: $10 with voucher supplied at event

#2 Contemplative

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Posted 13 May 2012 - 06:21 PM

For those of us who cannot attend in person, is there a way for us to participate via video conference or webinar or to purchase a video after the event? I'd love to share and partake in whatever means available. Thanks for passing on the information via your post.

#3 VanSnoozen

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Posted 24 May 2012 - 11:34 AM

For those of us who cannot attend in person, is there a way for us to participate via video conference or webinar or to purchase a video after the event? I'd love to share and partake in whatever means available. Thanks for passing on the information via your post.


Sorry for the delay, I am working to see what I can find out for you. It would be great if we could do this, but I don't know about all the logistics.