Sponsored by Global Genes represented by Amy Grover-Sr Manager of Patient Engagement and Kendall Davis- Director Strategic Alliances
Julea Steiner and Tammy Smith, Board of Directors Members, attended the event representing WUN. There were approximately 50 PWN and supporters at this event. The event consisted of a Meet and Greet dinner on Friday night. Saturday’s program included speakers Dr. Thomas Roth and Dr. Ariel Neikrug.
Dr Thomas Roth’ s topic was “Narcolepsy Medical Updates and Discussion/Q and A” and he discussed the importance of physicians taking a complete clinical patient history, cognitive deficits that have never been reversed for childhood onset of Narcolepsy due to missed social and classroom learning and education needed for pediatricians, educators, parents and neurologists about narcolepsy and cataplexy. Dr Ariel Neikrug’s topic was “Strategies for Living with Narcolepsy” and he discussed decreased physical and social functioning for PWN along with decreased vitality and QOL, PWN experience interpersonal difficulties such as isolation, communication deficits and stigma, finally he encouraged of the use of mindfulness which leads to awareness and thus making wise choices.
Later in the afternoon, Group Support Sessions were broken into two groups-one for PWN and the other for caregivers/supporters. We spent an hour in the session and it was helpful to discuss our mutual concerns and issues around our loved ones with narcolepsy. We wrapped up the day with a WAKE UP NARCOLEPSY powerpoint presentation given by Julea and Tammy which gave an overview of WUN.
In summary the benefits of attending the Meetup: given the size of the group it was easy to meet and talk with everyone. The doctors had time to answer questions after their presentations and were available to talk with everyone during the meeting. Amy and Kendall did an excellent job of running this Meetup and facilitating meaningful PWN and caregiver interaction.