Who We Are
We are passionate. We are parents. We are researchers. We are friends. We are a support system. We are warriors. We are persistent. We are creative. We are hopeful.
We are not doctors.
Board of Directors
Meet the Faces
Welcome everyone! We are the Bonds from Pennsylvania. Maiya (’05), Brandon (’02), Julian (’07), Kahn and Jennifer. Maiya was diagnosed after a very sudden onset of narcolepsy and cataplexy symptoms in 2014. Throughout this journey, we have learned not only about the challenges of living with narcolepsy, but how when faced with adversity, our family has grown stronger. Maiya has taught us about a resiliency, determination and fight that we never knew existed. We are so excited to connect with you.
Hi Everyone! We’re the Careys from Illinois! Sean, Erin, Kellyn (’01), Kiara (’01), Kyla (’02 cwn/c), Kierstin (’05), Kendell (’07 cwn/c). We’ve had more than a decade of experience with Narcolepsy because my sister was diagnosed in 2005. Narcolepsy has become part of our daily routine, BUT it doesn’t define us. We strive to ensure our kiddos with n/c are well treated in all aspects of their lives (meds, nutrition, supplements) which we have found allows them to continue to do the things they love. Meeting other families impacted by n/c helps our kiddos gain confidence and learn more about themselves. We look forward to meeting you!
Hola from Arizona! We are Ricardo, Andee, Krista (’07 – CWN+C, diagnosed at age 7) and Lili (’04). We are a typical busy family, faced with a variety of challenges. We meet narcolepsy head on, determined to grow and thrive through it. We believe supporting each other, maintaining a sense of humor and keeping our sights set on the bigger picture are keys to success. We look forward to connecting with you.
Hi everyone! From L>R, we’re Charlie (’06), Luke (’02), Garrett (’00), Lacy (’98), Elliott (’96), Ben (Elliott’s new hubby), parents Chris & Jenny. Five (5) of us have narcolepsy: mom and all the children except the middle one (Garrett). How narcolepsy affects us is as different as our personalities and interests, and none of us wants to be held back or defined by it. We believe in grace, community, compassion, advocating for oneself and others and overcoming adversity as best we can. Most of us live in Arkansas. Ben and Elliott live in Alabama.
We are the Rice family from Kentucky: Barry, Sherry, Lukas (’96), Gracie (’01 – CWN), Jaydin (’05) and Nadia (’10). Gracie was diagnosed with narcolepsy at age 9. This has been a learning and growing experience for our family. We have learned to appreciate the good days and allow ourselves space during the hard days. Although narcolepsy is hard, we embrace the challenge and move forward as a family and not surrender to this diagnosis.