My Nonprofit Reviews

I have served on the Board of Directors of Narcolepsy Network for several years now. I love its mission of advocating for and supporting people with narcolepsy. This year, I am especially proud of our Youth Ambassador program, our CONNECT program for younger kids, and the additional online support groups we are fostering since our nationwide in-person supports groups can't meet because of COVID. We are a member-supported organization, and those member dollars help us fund these important outreach programs. Between its members, its leadership, and its staff, Narcolepsy Network does a great job of supporting people with narcolepsy.

Narcolepsy Network connected me to critical resources when I was first diagnosed with narcolepsy. My first conference was life-changing...meeting other people with narcolepsy for the first time in my life and attending the conference sessions helped me adjust to the diagnosis when I really needed to know I could still be productive and happy despite being thrown such a curve ball. I am so grateful to Narcolepsy Network that I have volunteered for them for many years. Great organization!

I continue to be impressed with the way Narcolepsy Network advocates for people with narcolepsy. Their testimony in front of FDA in early 2018 got a new medication, Pitolisent, fast-tracked and into patients' hands years ahead of the normal trial schedule. That kind of organized advocacy means new treatments that make a real difference in peoples' lives.

When I got diagnosed with narcolepsy, I didn't know anything at all about it. I found Narcolepsy Network through Google. I had missed their annual conference that year, but I decided to go the following autumn. I was amazed at how profound it was to meet other people with narcolepsy, having struggled alone with it my whole life.

I haven't missed a conference since. The conferences give me friendships, education, a connection to the researchers who help us, and a way to channel my efforts into focused advocacy. I just can't say enough about how highly I value NN. It brings people in the narcolepsy world together...one of my friendships even hatched into helping launch a separate sleep non-profit, which does different things for our fellow People With Narcolepsy. The Narcolepsy Network truly shapes our community into a Network, connecting PWNs to fellow advocates and researchers. After ten years of having NN enrich my life, I am very happy to be newly serving on the Narcolepsy Network board of directors, excited to help others the way NN has helped me.