Shining a Spotlight on Narcolepsy at FDA

by julie on September 24, 2013

julie flygare narcolepsy spotlight

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!

Today’s Meeting Agenda PDF
Unite Narcolepsy’s Website
REM Runner’s FDA Journey

(Photography by Alex Withrow – Fast asleep in the Miami sunshine)

{ 14 comments… read them below or add one }

Dynamo Di September 24, 2013 at 10:43 am

Thank you for representing us all Julie 🙂

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julie September 28, 2013 at 12:05 am

You’re so welcome, Di! It was a fantastic day indeed.

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Kim McCleary September 24, 2013 at 11:02 am

Julie — It’s been a great pleasure and honor to work with you and the whole Unite Narcolepsy team to prepare for this day! I am so impressed with the community’s response and look forward to hearing all the voices shared at today’s meeting! Thank you for all you have done to get to this point and all you continue to do on behalf of narcolepsy!

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julie September 28, 2013 at 12:06 am

Thank you, Kim for leading our community to such a successful meeting at the FDA! It was a day I will never forget.

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Kerry September 24, 2013 at 11:18 am

It is going to be a great day!!

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julie September 28, 2013 at 12:06 am

Thank you for your support, Kerry! 🙂

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Beth K. September 24, 2013 at 10:11 pm

Hi Julie:
I just finished watching the whole web session on the FDA Patient Focused Meeting. As a parent of a child who has endured Narcolepsy for past 5 years I was moved to tears listening to all of the stories and struggles of those voices representing the Narcolepsy Patients via the meeting today. However, I am so very thankful that together we are pushing to raise awareness and understanding!! I am Hoping beyond Hope for that day when a treatment will become available which addresses not just symptoms of Narcolepsy but gets to the cause and will become a cure. So much strength and courage among all of us effected by this very misunderstood and misdiagnosed condition.

Keep up the great work and remember as you have said, WE ARE NOT ALONE!!

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julie September 28, 2013 at 12:07 am

Thank you for participating via webcast, Beth. I was moved to tears as well. A very emotional experience for all but a step in the right direction to build a brighter future for narcolepsy.

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keith September 24, 2013 at 10:39 pm

I too just finished watching the whole web session on the FDA Patient Focused Meeting. There appears to be much confusion, dis-information and lack of information among sufferers, caregivers and professionals. Iqas disappointed that FDA spent no time on the cause(s) of Narcolepsy and Catalepsy. Nonethless, the raised awareness was terrific. I hope follow-up among the medical and pharmaceutical communities will be swift and meaningful.

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julie September 28, 2013 at 12:10 am

Hi Keith, Thank you for participating via webcast. This program is really focused on gathering the *patient experience* with narcolepsy, as opposed to discussing the science or causes. To discuss the science, they will surely want to speak with the clinical and research experts. This was about learning what matters most for individuals and how narcolepsy effects our lives. I hope this helps clarify the meeting’s intentions a bit! Thanks again for all your incredible support! Your friend, Julie

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Jo Poplawski September 25, 2013 at 5:30 pm

Hi Keith.

The causes of narcolepsy and cataplexy was not one of the topics for the meeting because that is beyond the scope of what the FDA can do for us. They concentrated on the symptoms, living with narcolepsy and the effectiveness and issues with the current treatment issues because that is an area that they can use the data for to help evaluate future treatments and medications for approval.

The way it was explained is that when a company presents a new drug for approval, the FDA looks to see if the drug addresses known issues with the condition.

Other than that, it was a fantastic meeting. Even though I’ve suffered with narcolepsy for quite a while, learned a lot. The professionals there were very attentive and seemed genuinely concerned about what we had to say and in wanting to help.

It was a good day for narcolepsy.

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julie September 28, 2013 at 12:11 am

Thank you for your comment, Jo. Yes, this was quite a fantastic meeting and I too learned a lot. I’m so very proud of YOU and all our patient advocates! Sending big smiles your way, Julie

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Alex Withrow October 2, 2013 at 9:46 pm

There’s no better person to represent the Narcolepsy community than you!

(Also… I always loved that picture.)

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julie October 3, 2013 at 1:00 am

Thank you, Alex!

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