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2015 Award Winners

Narcolepsy Network’s annual awards recognize those who have made significant contributions to the narcolepsy community.   The recipients received their awards at our annual conference, held October 9-11, 2015, in Minneapolis, Minnesota.

The 2015 award recipients are:

Ruth Justus Nebus Volunteer of the Year: Amber Van Zee
When Amber’s son was diagnosed with narcolepsy and cataplexy 2.5 years ago, their lives turned upside down. That October, they attended their first Narcolepsy Network conference scared and feeling completely hopeless. At the conference, they met so many wonderful people who shared their story and gave them the confidence and hope that they needed. Since then, they have learned everything they could about narcolepsy and cataplexy and try to be the same comfort and hope to other families.

Public Awareness: Claire Crisp
Claire is a blogger and writer, advocating for children with narcolepsy. Originally from the UK, Claire trained as a physical therapist at the renowned St. Thomas’ Hospital in London. She then practiced in London hospitals for a decade. Her third child, Mathilda, developed narcolepsy at age 3, and after some soul-searching, Claire and her husband decided to move their family to California to get effective treatment at Stanford. She currently lives in LA where she is writing a memoir about her journey across two continents in search of a medical solution for her daughter. Her blog,, regularly attracts over 8,000 readers.

Clifford “Cliff” O’Dell Supporter of the Year: Sarah Jo Kozerow
Sarah was 22 when her mom finally got her diagnosis, but her mom has been narcoleptic Sarah’s whole life. When she was a kid, they would giggle when mom fell asleep during dinner, poke her when she fell asleep at movies, and speak her gibberish back as if it were a real language when her mom woke up. Probably the scariest incident happened when Sarah was about 8 years old and they were driving home from the grocery store: her mom turned to Sarah, did not seem to know who she was, and said, “I’m pleased to make your acquaintance,” before realizing where she was. Her symptoms worsened as the years went by and Sarah was in college when her mom was finally diagnosed. Besides being a supporter of her mom, Sarah is one of the biggest supporters of the Midwest Narcolepsy Support group. She helps keep the group running smoothly and maintains the website and listserve.

Researcher of the Year: Dr. Claire Donjacour
Dr. Donjacour has done interesting and important research on energy expenditure and overweight issues in narcolepsy. She started her career as an operating room nurse in the Netherlands. In 2000, she became a psychologist and later she went on to medical school. She trained to become a neurologist at the Leiden University Medical Center. She developed an interest in narcolepsy and she became a PhD on December 18, 2014 with her thesis titled, “Narcolepsy, endocrine, metabolic and other aspects.” She is currently working as a neurologist on sleep and epilepsy at SEIN in the town of Zwolle in the Netherlands.

Lifetime Achievement Award: Mali Einen
Mali has worked as the Stanford University’s Center for Narcolepsy Clinical Research Coordinator for over 13 years. Although only a portion of her job involves patient care, it is the work of helping to empower PWNs to do as well as possible that she enjoys most. Serving for six years, she is a past member of the Narcolepsy Network’s Board of Directors, has participated in a number of media interviews/educational programs about narcolepsy, and spoke before a FDA panel on behalf of patients with narcolepsy. Mali’s own narcolepsy onset was at age 22.