Over 160 people graced the halls of the Hilton Hotel in Bloomington to experience the first National Patient Sleep Conference. A sleep disorder patient advocate, it was a labor of love for me personally to be able to offer such an event. This concept of a patient sleep conference has been the talk of sleep disorder chat rooms and message boards dating back to the mid 90's and my experiences as an AOL sleep apnea chat host.
Reading the conference review forms submitted by attendees not only confirms success but encourages us to make this an annual event. Initially, I gauged “success” on the number of attendees which I anticipated at well over 300. However, the comments from patients, physician speakers and sponsors who made the weekend possible have made me realize that for a first time event, success would not be judged by numbers but by the quality of the offering and the enjoyment and learning experience received by all.
Speaker evaluation forms gave all very high marks. Dr. Matthew Abraham's lecture on “Understanding your Sleep Study Report” was extremely well received. Dr. Abraham then made himself available all weekend to personally talk with patients who brought their sleep study summaries.
Dr. Dement thrilled the crowd with his lecture about the history of sleep medicine which gave all a better understanding of how far we have come but have yet to go. His book, “The Promise of Sleep”, is in my opinion one of the finest books available for those who want a real understanding of what sleep is and why it is important. Dr. Dement graciously autographed books for anyone who asked. He was a delight and we very much appreciated his support and his suggestions for future conferences.
Dr. Jim O'Brien received high marks and comments for his lectures on “The Importance of Sleep” and “Insomnia”. Dan Adams from Apollo light gave two very informative lectures on Circadian Rhythm Disorders and opened the door to possibilities and solutions for many attendees.
Peter Berg from the Great Lakes ADA and Mark Bronstein , an attorney from the Boston area answered a lot of questions about legal issues and patient rights. We have received many email requests for more information as a result of these two wonderful speakers.
Dr. David Rapoport and Dr. B. Gail Demko covered the topic of sleep apnea well and attendee comments suggested more such lectures for future conferences. There was just not enough time to cover all aspects of this important topic. Both physicians received rave reviews. Ed Grandi, ASAA Executive Director and Dave Hargett introduced the attendees to the benefits of the American Sleep Apnea Association and their important A.W.A.K.E. network of support groups. Dave spoke on the benefits of Medic Alert membership as it pertains to sleep disorders.
Dr. Ristanovic, Dr. Eve Rogers and NarNet Director Dr. Eveline Honig made sure that those attendees with hypersomnia and narcolepsy received the latest information available. Dr. Rogers covered the social aspects of living with narcolepsy and was followed by husband and wife Jeff and Dyan Chin who shared their experience as a couple living with Dyans severe narcolepsy with cataplexy. Tears were shed during Chin's talk as those in the audience acknowledged and understood the challenges of living with narcolepsy. Later, I was told by several people that one of the greatest impacts of attending the conference was the realization they were not alone in the struggle. For some, this was the first opportunity to meet other people with narcolepsy.
Lynne Matallana, President of the National Fibromyalgia Association traveled all the way from Orange County, California to give 2 important lectures on fibromyalgia. We very much appreciated her support and continue to receive a lot of email from attendees requesting more information about fibro and sleep related issues. Lynne was generous of her time in sharing information with patient attendees as well as autographing her new and compelling book about fibro.
Local Dr. Michael Schmitz provided information on cognitive behavioral therapy as treatments for insomnia as well as demonstrating CBT for other sleep related issues. CBT is clearly a well respected and successful methodology responsible for helping many patients reach physician prescribed therapeutic compliance and we appreciate Dr. Schmitz lecture.
Overall, it was clear that attendees appreciated the opportunity to meet each other, and have the unusual chance to talk with physicians and other medical professionals in the spirit of all learning from each other. Many physicians told me they appreciated the casual atmosphere of being able to hear the concerns and opinions of patients. It was also a treat for those sleep techs attending for continuing education credits to interact with patients.
Friday evenings meet and greet social was one of the highlights of the weekend with a live local band BLUE DADDIES and Dr. Golish from the Cleveland Clinic available to talk with patients one on one. In this relaxed atmosphere with great music, great food and drink, it was clear that community was an important aspect of our conference.
Conference evaluation comments were extremely positive and one thing was clear – a firm nod of approval and an overwhelming suggestion for future conferences. One of the top requests was that the next conference be at least a full two days long. Attendees wanted more, more lectures, more exhibit time, more opportunities to interact one on one with physicians and fellow patients.
We are in process of planning the next event. Announcements on date and location will be available soon. Thanks to all who joined in this wonderful event. We sincerely thank those who helped us make the conference a reality, especially our GOLD sponsors Respironics, ResMed and Invacare. Thanks for believing in the dream and making it happen. Until next year,
Tracy R. Nasca, Senior Vice President, Talk About Sleep Inc.