Year in Review
2018 was a busy year! We had the honor of speaking to representatives at the Food and Drug Administration (FDA) to encourage the development of new medications. We were able to be active at several large conferences, such as the National Parent Teacher Association conference, to talk with those who are directly involved with the lives of children with narcolepsy. In the fall, we held our successful annual conference and we had runners participate in the New York City Marathon.
As we look forward to 2019, we will continue fighting for the future of those with narcolepsy. With our deepest thanks for your generosity in the past, we ask you to renew your commitment to Narcolepsy Network (NN) with a tax-deductible donation of any size. Make your donation at this link.
Want to know what else we’ve been up to in 2018? Keep reading to learn about our happenings during the past year.
Narcolepsy Network’s President Dr. Mark Patterson, Executive Director Dr. Eveline Honig, Outreach Coordinator Melissa Patterson and Board Members Keith Harper and Sharon O’Shaughnessy went to the FDA to meet with officials responsible for drug evaluations.
At the end of February, narcolepsy advocates traveled to Washington, DC for Rare Disease Week, a week that brings together rare disease community members from across the country to learn about legislative issues, meet other advocates, and share experiences with legislators.
The Annual Narcolepsy Bed Race was a doubleheader in 2018. There were two races, one in its usual location of Roanoke, VA and another in Dublin, Ireland. Members of two Irish narcolepsy groups, Narcolepsy in Ireland and SOUND (Sufferers of Unique Narcolepsy Disorder), joined in on this fun event.
We once again asked the narcolepsy community to celebrate Suddenly Sleepy Saturday, also known as Narcolepsy Awareness Day, by requesting a proclamation officially recognizing the day from a governor or mayor. In 2018, 27 proclamations were granted from US governors and 10 from US mayors.
Executive Director Dr. Eveline Honig and Youth Ambassador Mackenzie were at the National Parent Teacher Association Convention & Expo. They talked to educational leaders and parents about narcolepsy and how it impacts students.
Narcolepsy Network staff and board members met with some of NN’s Medical Advisory Board including Dr. Todd Swick, Dr. Thomas Scammell, and Dr. Lois Krahn. They met before the Annual SLEEP meeting, a joint venture of the American Academy of Sleep Medicine and the Sleep Research Society. At the meeting, Dr. Michael Thorpy, Dr. Bogan, and Eveline presented “Get to Know Narcolepsy.”
President Dr. Mark Patterson and Executive Director Dr. Eveline Honig were invited to participate at the International Narcolepsy meeting in Boston. Dr. Patterson presented a poster on cataplexy and they also gave a presentation on NN’s activities.
On October 5-7, we headed to the Midwest for the 33rd Annual Conference in Indianapolis, Indiana. Some of the popular sessions included “An Integrative Health Approach to Narcolepsy†with Dr. Rubin Naiman, “Sleep Disorders in the Workplace†with a representative from the Job Accommodation Network (JAN), and there were sessions and support groups for a range of ages and needs
#TeamNarcolepsy ran the TCS New York City Marathon and our eight runners not only raised a lot of narcolepsy awareness, but they also raised funds for NN – over $36,000! We were there in NYC to support the runners with our designated “Cheer Zone.”
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Date Created: December 17th, 2018
Last Updated: December 17th, 2018
