Narcolepsy Grand Rounds Speaker and CE Event Keynote at Nova Southeastern University
I leave for Australia in a few days, where I’ll be a keynote speaker at the Inaugural Narcolepsy Patient Conference hosted by NSG Australia.
After returning from Australia, I’ll be taking off for Fort Lauderdale! I’ve been invited to speak at Nova Southeastern University on May 8th for their Grand Rounds and a Continuing Education (CE) event. NSU is the eighth largest not-for-profit private university in the nation and operates 20 different health care centers across the Miami-Dade and Broward county. I can’t wait to raise narcolepsy awareness with the NSU community.
At noon, I will be the speaker for Grand Rounds to researchers, clinicians and faculty at the College of Osteopathic Medicine (who teach medical students and run the clinic), the College of Medical Sciences (who do research and teach sciences for all the health professional students), and the College of Healthcare Sciences (who teach and run the allied health clinics for PA, PT, OT, Audiology and Anesthesia Anesthetists).
After Grand Rounds, I will be the keynote speaker for a CE event, “What is Narcolepsy?” from 3-5pm for students, other faculty and clinicians from the community. Community members are welcome to join, register here: https://www.nova.edu/webforms/chcs/narcolepsy-workshop/.
The CE Event will be followed with a book signing of Wide Awake and Dreaming: A Memoir of Narcolepsy.
Sharing my inspiring and informative narcolepsy journey to medical students and health care professionals is an honor and joy. There’s no better feeling than watching perceptions shift, and opening hearts and minds to the true experience of living with narcolepsy.
Big thanks to Cheryl Purvis, Ph.D., Professor of Anatomy at the College of Medical Sciences at NSU, who believes in the power of the patient perspective. I met Dr. Purvis at a conference over four years ago, she saw me speak at one of my very first speaking gigs. For the past two years, we’ve worked together to plan this exciting trip to NSU. It’s no wonder that Dr. Purvis’ optometry students recently named her Medical Sciences Professor of the Year! She’s an amazing health advocate and I’m lucky to work with her to raise narcolepsy awareness.
I’ll share photos and a re-cap after I return!
Julie —- your global wings are as wide and strong as ever—-
Congratulations on your international tour.
Noticing attention to Anesthisists let me share my experience with you.
Last year was a year of three important surgeries. First was cataracts removed in both eyes, done months apart, and second was the removal of three lymph nodes in my neck for biopsy.
The pre-op interviews with the anesthetist was extremely important for discussing the issue of Narcolepsy and Cataplexy. Both anesthetists took great care in keeping me just under the no pain level for each type of surgery and, researched the type of chemical that would not interfere with Narcolepsy or Cataplexy and have a short period of recovery. I wore my NARNET Orange Medical Band for all medical personnel to be advised along with an index card I pinned to my gown saying, Please remember to care for me being a Narcoleptic with Cataplexy. All went quite smoothly, the full staff checking in with me during recovery to make sure there was no reaction. This is why it is so important for PWN’s to take great care in making sure we are treated medically in consideration of, and concerns for Narcolepsy and Cataplexy.
Julie have a wonderful trip making sure you stay well hydrated and physically active as much as time and space allows. In Australia I wish you SA-WADEE, Aboriginese greeting for Recognition and Hello-Goodbye, meaning “I See YOU”
Good luck, take plenty of photos and let us know of your great successes.
First and foremost: travel safe! Secondly, thank you for all your hard work!
I’m inanely curious as to how well you sleep in Australia. Silly as it sounds. Was the schedule change a hard adjustment or a more natural fit?
It would be interesting to get a Toastmaster’s Group together specifically for Narcoleptics (even if via Skype). One of my bachelor’s degrees was originally named “Speech Communications,” I’ve written a number of political speeches at every level, and I had great fun in Toastmoasters pre-baby and pre-diagnosis. However, I can tell that my skills are but rusty and potentially hindered by the N on a bad day.I won’t let that stop me though. We (someone with in one of the relevant groups) needs to train actual patients, like yourself, to tell their stories, raise public awareness, secure research funding and design interesting and memorable CME programs.The side effects of N (anxiety, memory, cataplexy) may limit some of the best advocates we have. But with pratice…comes comfort.
Ten years at a medical associaton and not one of the thousands of medical students I spoke with had an interest in sleep medicine. In a city the size of Austin, there should be more than two and the wait shouldn’t be 1-3 months. I hope one or more groups are working recruitment efforts. Haven’t seen one yet.
I’m e-wake and postulating.
My sister just met you at NSU. She was the caterer who spoke to you about her narcoleptic niece. That is my daughter Emma! Emma is doing her Senior thesis on Narcolepsy. She would be over the moon if she could interview you. Even if over email.
We loved your book. It was so enlightening, and engaging.
Thanks for being an ambassador for this relatively unknown disease.
You are truly an inspiration in our family.
Hi Denise, Thank you for contacting me. It was nice to meet your sister at NSU, I only wished she could’ve attended my session and we’d had more time to chat. Anyway, please tell Emma I’m cheering for her and to contact me at REMRunner01@gmail.com about scheduling a time to speak. Thank you!