Celebrating 5 Years of Narcolepsy Advocacy
This week marks five years as a narcolepsy advocate. When I published my first REM Runner blog post, I “came out” publicly after two years of hush-hush. I didn’t know where this would lead me, but every fiber in me ached to speak up and make change.
Once I began, I watched myself devote time and energy I didn’t know I had. The momentum was incredible. It’s been exhilarating, exhausting, serendipitous, lonely, empowering, maddening and meaningful beyond words. I dare say, I’ve accomplished more in these five years than I ever imagined for my lifetime.
A few thoughts for young advocates:
- I started from scratch and you can too. Don’t listen to nay-sayers and dream-squashers.
- For every success, I’ve had two let-downs. Keep going.
- You cannot please everyone. You must please yourself. Live with integrity and without jealousy.
Highlights from the past year:
- Project Sleep received 501(c)(3) status and launched our new website.
- Working with Honda to remove offensive ad and creating narcolepsy PSA for TV.
- 7 presentations across the country – my favorites were UCLA Med School & Disruptive Innovations Conference.
- NARCOLEPSY: NOT ALONE has a beautiful new website & over 600 campaign t-shirts are being worn around the world.
Looking forward to the year ahead:
- My keynote presentation in Australia. Excited to meet my Aussie friends!
- Building Project Sleep’s fantastic momentum – including the SLEEP WALK event series.
- Making time for myself – yoga, running and relaxation.
I am so thankful for each and every supporter and reader. To those that have been following since the beginning, you hold a special place in my heart. Thank you for making the last five – the best five!
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