Today’s the day that narcolepsy shines in the spotlight! In a few hours, I will be at FDA for the Narcolepsy Patient Focused Meeting. Joining me will be over 100 narcolepsy patient advocates in-person and over 500 more via webcast around the world. We will share our stories and help FDA better understand the REAL narcolepsy – with all its dark sides, complications and variations.
Thank you to everyone who has supported this initiative since I first launched this effort over a year ago. Thank you to the Unite Narcolepsy team for launching the powerful survey and successful webinar series. FDA has been “wowed” by our community’s responsiveness.
For me, today is a celebration of friendship, strength and determination. Despite our challenges, we are rallying together, speaking up and creating a brighter future for narcolepsy. I’ll report back soon!
(Photography by Alex Withrow – Fast asleep in the Miami sunshine)