By Eugena Brooks
I hope you are doing well. I myself am once again super charged and basking in the empowerment of having experienced the second (I hope annual) AWAKETOGETHER Summit produced by the American Sleep Apnea Association (ASAA). The patient-focused meeting was held in San Francisco on 9/9/19 as part of the yearly Sleeptember campaign held in (you guessed it) September.
There is nothing more inspiring or rewarding than being in a room full of people that are empathetic and support working to improve the health issues we patients are going through. We are finding out every day that there is so much in terms of general health that is negatively impacted by untreated sleep issues — sleep apnea being the most common of the slumber slayers.
Gatherings like this provide an opportunity to share results of previously gathered information important to improving our health while collecting new ideas and information, while setting needs assessments for moving forward. If only we could all afford to do this more often. Subscribing to the ASAA’s YouTube collection is a great way to keep in the loop on the latest initiatives by the organization and the public they serve.
Unfortunately, due to personal health issues I was unable to attend the AWAKETOGETHER Summit in person. I did, however, attend by watching it live online. What a great experience just the same! In the comfort of my home I watched the proceedings on my laptop. To start with, let me say kudos to Adam and Justine Amdur and the host of AWAKETOGETHER teammates and volunteers for the hard work they put in to make all of this happen. Without their input and effort none of this would exist. This humble couple and all the board members of the ASAA are patients themselves trying to negotiate their issues. The Amdurs work as a family and give up a lot of time to coordinate the initiatives of the organization effectively, and I thank them for that.
Shannon Sullivan, M.D., started the presentations with a panel discussion Greater Than Sleep Apnea: Overlapping Issues where four patient panelists shared their stories and experiences dealing with sleep apnea and related health issues. Online participants were given the opportunity to take the latest AWAKE Survey and have their input included in the data. Dr. Sullivan is a pediatric pulmonologist in Redwood City, CA., and is affiliated with multiple hospitals in the area, including Lucile Packard Children’s Hospital Stanford and Stanford Health Care-Stanford Hospital.
What followed was an interesting and informative piece on the multi-disciplinary and pediatric clinic founded at Sanford University by the late Dr. Christian Guilleminault whose vision was (and is) trailblazing work regarding the treatment of sleep apnea in adult and pediatric populations. Last for the morning was Treating Sleep Apnea as a Team Sport where moderator Dr. Stacey Quo negotiated a discussion between professionals and more patient panelists on conditions, issues and treatments now and moving forward. Dr. Quo is an orthodontics & dentofacial orthopedics practitioner in Palo Alto, CA. The clinical expert panel included: Dr. Kasey Li, surgeon certified by the American Boards of Otolaryngology, Oral and Maxillofacial Surgery, and Facial Plastic and Reconstructive Surgery in Palo Alto, CA, Dr. A. Carmen Choy, a Board-Certified Allergist, providing comprehensive medical care for adult and children in the Silicon Valley, CA; Dr. Daniel Jin-Blum, a sleep psychologist and on the adjunct clinical faculty at Stanford, Palo Alto, CA; Christina Semonick M.S., R.SLP, CCC-SLP is a Speech-Language Pathologist at Clarity Speech Therapy in Mountain View, CA; and Dr. Shannon Sullivan.
The afternoon session continued with Understanding the Links Between Sleep and Suicide, with Dr. Michael Grandner was insightful and revealing. Dr. Grandner, a world-renowned lecturer, is board-certified in Behavioral Sleep Medicine and Director of the Sleep and Health Research Program at the University of Arizona and the Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center in Tucson, AZ. He is an Assistant Professor of Psychiatry, Psychology, Medicine and Nutritional Sciences. His research focuses on connections between sleep and health. You can view a 2018 video where Dr. Grandner describes associations between suicide and sleep, and a host of other related conditions and behavioral health.
The Power of Patient Generated Data was presented by Bray Patrick-Lake, M.F.S. at the summit. Ms. Patrick-Lake is the Director of Strategic Partnerships at Evidation Health. She develops collaborations to support the design and implementation of participant-centered studies and serves on the All of Us National Advisory Panel, the Digital Medicine Society Scientific Leadership Board, and the National Academies of Sciences, Engineering, and Medicine (NASEM) Health Science Policy Board. A discussion took place about valuable data gathered by sources is not being appropriately shared with physicians and other medical research groups who need the information to help improve therapies and treatment.
For those of us suffering with sleep apnea and its comorbidities, this is a huge issue that needs to be addressed and just one of many reasons it is imperative that patient-driven organizations, and our participation in them, is so very important. It has been the preverbal missing link in adequate therapy and treatment. Even though it’s in its infancy, the movement is making a huge difference.
The rest of the afternoon program included a summary of the day with a presentation by Dr. A. Joseph Borelli, Jr. sleep apnea patient and ASAA Board Member. He is a graduate from the Drexel University College of Medicine. Dr. Borelli practices in Bluffton, SC and specializes in Diagnostic Radiology and Radiology. Concluding the day was the launch of the RUN: Right Under Your Nose Campaign by AWAKETOGETHER Program Honorary Chair Eric Guilleminault.
Other Summit presenters included Patient Panelists: Brian Delaney, Matt Gentry, Janice Sternfeld, Karen Wolk, Ari Berwaldt, Janie Seto; Patient Advocates: Stacey Tinianov, Will Headapohl, and Dr. Peter Stein.