A Note of Thanks & FDA Update

by julie on November 22, 2012

This Thanksgiving, I’m grateful for your support. 

FDA Update:
Last month, I launched the campaign for narcolepsy’s inclusion in the FDA Patient Focused Drug Development Initiative, but I could not do this alone.

I’m thrilled to report that we came together as a unified voice in support of narcolepsy. By my unofficial count, a few HUNDRED letters and comments supported narcolepsy!
What’s Next?
FDA is in the process of reviewing the 2400 comments to the docket, and should finish that analysis by the end of the calendar year. Then, FDA aims to publish the list of disease areas within the first few months of 2013.

While a few months feels like a long time, this timeframe ensures that FDA is reading the messages carefully to make informed decisions. I will keep you posted with updates.

In Closing:
While living with narcolepsy is challenging, this journey has brought so many inspiring people into my life. To my narcolepsy family around the globe, may your Thanksgiving be filled with love, good cheer and long naps! 

“Friendship is born at that moment
when one person says to another,
‘What! You too? I thought
I was the only one.'” -C.S. Lewis

For updated posts about the FDA Initiative, click here.

{ 3 comments… read them below or add one }

Jessica November 30, 2012 at 2:39 am

Thanks for the update! I was trying to find information and am glad I found your update! And thank you informing us and making it so easy to leave comments! I am really hoping that Narcolepsy makes the list.

Again, thank you for the information and opportunity to include the voices of people affected by Narcolepsy, I would have never found out about it otherwise! <3


Cheryl February 19, 2013 at 1:14 am

Hi Julie,
I have beem wondering if there is any news on the FDA initiative?
I read your book from beginning to end yesterday, what a powerful way to make others aware of what PWN go through..


julie February 19, 2013 at 1:40 am

Hi Cheryl,

Thank you so much for reading my book! I’m so glad you felt it was a powerful way to make others aware of narcolepsy. That’s my greatest hope.

No updates on the FDA initiative but I will be attending a meeting in a few weeks at FDA and hope for an update then.

With gratitude and smiles,


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