Since around 2013, I’ve attended dozens of different Narcolepsy/Idiopathic Hypersomnia (IH) non-profit organizations events.
Different conferences, summits, discussion groups, town halls, and other events including in addition, some online webinars, etc.
Over the years I’ve volunteered taking part in Art Exhibit’s, and doing photography/videography for a few of the organizations (Pwn4pwn, WUN and NN).
Have interacted with these organization leaders, but I have no actual ongoing affiliation other than having volunteered some of my efforts, as mentioned above; which is to say that I have zero bias in my ‘independent advocacy’ voice, efforts, and work.
All of the organizations are about both Narcolepsy and IH, in other words Hypersomnolence disorders, regardless of their name perhaps only including Narcolepsy.
These organizations can be a good resource for getting informational brochures, finding potential support groups (mostly online) and most of them throw an annual event, or various events of different sorts.
The in-person events can be a great way to interact with others living with a similar matter.
Sometimes they engage in research studies which individuals (patients, a term I seldomly use) can partake in, or other legislature ongoing efforts where signatures may be needed, desired.
They can also be a resource for finding doctors, and/or also ongoing clinical trails/studies, that seek individuals living with a specific, or sometimes various, Hypersomnolence disorder/s.
Below are the different non-profit organizations, linked by their name, followed up with a description of my own take on each.
Non Profit Organizations:
Wellness, Sleep and Circadian Network
“The American Sleep Apnea Association is dedicated to reducing injury, disability, and death from sleep apnea and to enhancing the well being of those affected by this common disorder.
Over the years, ASAA became a patient-led organization, leading efforts in education, research, and policy advocacy for sleep apnea and related disorders.
However, people living with sleep apnea are typically not living with sleep apnea alone. In fact, it is common for there to be the presence of other related sleep, medical and psychiatric disorders. Unfortunately, both patients and providers across the globe are frequently unaware of this bidirectional relationship and impact.
Bridging the gap between day and night as the “KNOWLEDGE HUB” and motivating a global movement to harness all 24 hours for optimal living driven by research, learning, collaboration and community.”
Pwn4Pwn (Pwn = Person/s with Narcolepsy)
A quite new and growing organization, hopefully it will be successful and remain strong, it be great if they can throw an event now and then, time will tell.
It is very patient oriented, and open to the patient perspective; something ‘I at least,’ very much value and respect.
It offers various ‘free’ programs including a ‘Jobs Project’ and ‘Health Wellness 360 Program.’
Part of taking part in the free programs is you are connected with others with the disease, one on one like.
There’s an app through circle, that one can have on their cell phone, or use on their computer, connecting everyone.
Each Monday of the month, at 8:30PM EST they have a ‘NapChat’ zoom call, sometimes with guest speakers who do a presentation and have a Q&A.
Everyone involved has Narcolepsy or IH.
Wake Up Narcolepsy (WUN)
Been around over a decade and also is a bit more open to the patient perspective.
They have different online support groups going on regularly.
They also do regular online webinars having guest doctors do a presentation with Q&A.
The annual summit is ‘free’ to attend, as well as they have a live stream for virtual attendees.
The use of the Whova app during the summit, can be a good way to meet and interact with others, whether attending in-person or virtually.
The two summits that I’ve attended, have been very good experiences.
The organization also throws a kids weekend retreat and other, different events.
Project Sleep
This organization has a very strong social media presence, while also being involved in different legislature, Washington DC / White House, things, as well as doing different research surveys and what not.
They have different programs they offer like ‘Rising Voices.’
They do smaller events at times, but are in attendance at many of the Narcolepsy/IH events.
It was created by Julie Flygare (remrunner) who has Narcolepsy and wrote a book ‘Wide Awake and Dreaming.’
Hypersomnia Foundation
A very good organization from what I can tell, with a strong focus on IH.
While this organization tends to focus more so towards IH, they also focus on Narcolepsy and other Hypersomnolence disorders.
Their annual ‘Beyond Sleepy’ Conference takes place just before the annual AASM SLEEP Meeting, in whatever same city as SLEEP, which means lots of top doctors in the field are in attendance.
The sessions I’ve attended virtually of the conference, have been very good.
The use of the Whova app during the event, can be a good way to meet and interact with others, whether attending in-person or virtually.
Narcolepsy Network (NN)
This organization has been around the longest.
When I first was going through the diagnosis path, having found the term Cataplexy back in 2008, the ‘message boards’ that they used to have, were phenomenal and super valuable for me, then; unfortunately they were deleted around 2016/2017.
The organization used to be very open to the patient perspective, even having patient presenter’s at the annual conference, doing abstract but genuinely helpful and interesting sessions.
The organization changed hands and went through big changes over the past decade, it to me has felt a lot less open and willing to engage in what are patient perspective’s; but regardless they still are a resource and doing advocacy.
They’ve been involved in different legislature, Washington DC / White House, things, as well as doing different research surveys and what not.
I’ll always be bitter about their having deleted the ‘message boards.’
Naps for life “a social enterprise dedicated to transforming the lives of individuals living with Central disorders of hypersomnolence, including narcolepsy, idiopathic hypersomnia (IH), and Klein-Levin syndrome.”
Not a non profit organization but an annual Sleep Medicine event:
“SLEEP is the annual meeting of the Associated Professional Sleep Societies, LLC (APSS), which is a joint venture of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS).”
SLEEP is a huge trade show like event, similar to how CES each year in Vegas is for tech.
Though SLEEP is for sleep medicine, having a focus on medical professionals, offering post grad courses and what not, it is not so much a patient event, though as a ‘patient advocate,’ I’ve attended two of these.
Podcasts
Narcolepsy Navigators Podcast (Is part of Naps for life)
“Every episode is a peek into the lives of people navigating these conditions every single day. It’s raw, it’s real, and it’s about sharing stories that are way too important to miss.”
Sleep Science Today Podcast “Known widely as “The Sleep Science Guy,” Andrew Colsky brings a unique blend of scientific rigor, therapeutic insight, and compassionate advocacy to his work, making him one of the leading voices in sleep health and wellness. As the host of the “Sleep Science Today” radio show and founder of the National Sleep Center, Andrew’s mission is clear: to democratize access to high-quality sleep science and promote sleep as an essential pillar of well-being.”
Sleep is my Waking Passion Podcasts
Dr. Alison Kole is a triple-board-certified Pulmonary, Critical Care, and Sleep Medicine Physician “a fellowship-trained and board-certified sleep medicine specialist and chronic insomniac turned sleep biohacker who is on a mission to empower my listeners to improve their sleep naturally. Sleep Is My Waking Passion™ blends holistic sleep improvement strategies and medical insights with a focus on women’s health and self-care.”
Colorado STRONG Narcolepsy Support Group
An online, through zoom, once a month support group. There to discuss Narcolepsy and IH, having regular guest speakers and certain meetings that are specifically for those who are loved one’s or care takers of persons with Narcolepsy or IH.
To attend and/or become a member of it, you can join the Facebook ‘Colorado STRONG Narcolepsy and IH Support Group’ or can access it through PWN4PWN’s circle app (just requires registering perhaps first at their website).
It’s been around 12+ years!
Dr. Anne Marie Morse, DO
DAMM Good Sleep
“Neurologist – Sleep Specialist – Consultant
Dr. Anne Marie Morse has nearly a decade of experience treating adults and children for neurologic and sleep disorders. In addition to being a clinician, she is also a researcher, educator and administrator. Dr. Morse is fully invested in sleep health advocacy and increasing awareness about the importance of healthy sleep and the impact of sleep-wake disorders. Well-known for her expertise in sleep and her TikTok channel, Dr. Morse serves as a key opinion leader for pediatric narcolepsy and hypersomnia disorders. She frequently speaks at local, regional and national conferences, and enjoys opportunities to provide content for media, schools and community-based events.”
Other Resources
Lastly, there are three different online sites which ‘in my opinion’ can be excellent resources, offering much deeper experiences, stories and perspectives.
Though, I should and will say that when using these to gain information, it is important to take everything with ‘a grain of salt,’ using caution and common sense to filter what is taken in.
Over time, the more that one takes in, including reading what not medical literature, terminology definitions from different sources, one can decipher what may be or may not be so, accurate.
For me, without these sort of forums, message board, chat groups, I may have never actually recognized much of the broader elements or aspects of the disease.
With that word of caution mentioned, I’ll put these in the order that I value these:
The r/Narcolepsy subreddit.
Personally, I feel it is ‘absolute gold’ as it has been around well over a decade and holds mountains of real information, first hand experiences and perspectives that you will not find, nor be offered, elsewhere.
It for me, basically replaced the above mentioned, now long deleted, ‘NN Message Boards.’
The Narcolepsy Discord Channel.
This is a bit different, but actually in many ways similar to the subreddit, actually having many of the same mods and is also linked within the subreddit.
The big difference is that it is meant to be more of a chat, ‘shorter’ back and forth, than the subreddit where one can really delve much deeper in posting and/or commenting.
The Narcolepsy.Sleep-Disorders.net Community.
While I don’t actually spend much time here, it exists.
It offers different articles written by persons with Narcolepsy, as well as persons with IH, and it has a forum.
Being that these sights do not allow for linking one’s own work, or ‘self-promotion’ as they term it, I have been a bit turned off at times, and/or shot down when I’m simply trying to offer something that I feel could be of real actual value, linking my own advocacy work, to another.
With that said, I still engage but just have to limit myself in ways.
Some are more strict than others and I try to not push it.
Though, at the same time sharing a blog post/article that I’ve created, can in certain instances offer much more than my attempting to chat and/or comment trying to condense whatever is the value, said within my work.
They are what they are; it is what it is.