dealing with narcolepsy, wedding planning, a law degree and some new fitness goals…

A favour to ask!! – FDA submission letter

on October 28, 2012

There is a very inspiring lady in America by the name of Julie Flygare who is also known as the REM runner, she does wonderful things to help raise awareness about narcolepsy.  I find her an incredibly motivating and inspiring young woman.  She studied law and was diagnosed with narcolepsy mid way through her degree. (sound familiar?!)  She is a narcolepsy advocate and really embodies my views about improving public responses through education and understanding.

Yesterday Julie attended a meeting held by the Food and Drug Association in America. (the FDA).

Image courtesy of www.julieflygare.comThere is currently an opportunity for us to submit letters to the FDA in the USA in relation to a groundbreaking new patient-focused drug development initiative  – to better inform the FDA’s drug and biologics review process with input from patients who experience particular diseases or conditions.  Narcolepsy is just one of 39 disease areas nominated for the FDA’s consideration. (Details here)

Only 20 disease areas will be chosen.

Julie has confirmed that the FDA will count the number of responses by disease and it WILL matter which communities showed strong support.  The Director of the Office of Planning and Analysis at FDA has emphasised the value of written comments received by the FDA.

I see no reason why we cannot offer our support from Australia (or any other country you happen to be sitting in when you read this little blog of mine!).

Any further developments and breakthroughs in relation to narcolepsy in any country can only provide benefit to us all in the long run. Please take the time to fill out the letter I would really appreciate it. The template is really well set up and easy to complete 🙂

Instructions can be found here:

Submissions are due by 1 November.  This is 5 minutes of your day that could really make a great difference to many lives!

Thank you in advance!


(I’d also like to thank Julie for allowing me to blatantly plagiarise some of her words in composing the above post – and also for all her work in putting the template and easy to follow instructions together)


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