Raising narcolepsy awareness, supporting research for a cure. Narcolepsy awareness. Wake Up Narcolepsy is a nonprofit organization working to improve narcolepsy awareness, diagnosis, treatment and research for a cure.
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.
I have a theory that the plot of Sleeping Beauty was based, in large part, on my son Dylan. I don’t mean to suggest my son grew up with fairies or sorcery, obviously those were added for fairy tale flair, but he did fall into a deep slumber for the better part of two years after being pricked by a cursed needle. While I recognize my theory may be somewhat controversial and that it relies heavily on other yet unproven theories like time travel, I am confident that in time, much like many of Einstein’s theories, the missing pieces will fall into place once modern science has caught up to my intellect.
Dylan Kyle: the OG Sleeping Beauty
My sleeping beauty, Dylan Kyle, started displaying the first signs of narcolepsy two months before his third birthday. I won’t go into the sordid details of obtaining a diagnosis, the battery of tests he was subjected to or the cornucopia of medication he sampled for the two years that followed, but suffice it to say this part of Dylan’s story was so unpleasant that even Disney found it too tragic to include (and we all know Disney loves a good tearjerker – Bambi, Nemo, Toy Story 3, Up – need I go on?). Having said that, if you’re looking for some good old-fashioned schadenfreude you can read about Dylan’s story in more detail here. During this time, the meds weren’t working at all, in fact, they only served to worsen his symptoms. Modafinil, an alertness medication, actually made him sleepier. So much so, that his doctor considered giving him Modafinil at night to help with his poor nighttime sleep. Stimulants, like Ritalin and Biphentin, helped slightly with his excessive daytime sleepiness but they made him so angry and irritable we almost wished he were sleeping. Anti-depressants, which are used to manage cataplexy, also helped a bit (his cataplexy was, and continues to be, very bad) but they made him incredibly impulsive and uncontrollable. So, from the ages of three to five, my sleeping beauty slept.
A lot can Happen in Two Years
Now, in the fairy tale, they don’t give us much information about what happened whilst the princess slumbered. We can hypothesize she missed out on attending a few galas, perhaps she missed a beheading or two, but it’s almost as if time didn’t pass and nothing was missed. In contrast, my sleeping beauty missed out on a lot. Because Dylan was always either sleeping or sleepy, he had very limited time and energy to do anything. He missed out on playdates and park visits and birthday parties (even two of his own). He never learned to ride a bike or throw a ball or play a sport or even to read and write (though fortunately, thanks to Leap Frog, he learned all his numbers and letters pre-narcolepsy). He never even learned the bare basics of how to play or how to socialize or how to be a friend – all things kids typically learn organically by interacting with one another. Play may seem trivial, but it is crucial for learning and developing new skills. Play enriches social-emotional skills (eg. empathy, patience, teamwork), physical skills (eg. fine motor and gross motor), academic learning, cognitive development and so much more.
It was a sip, not a kiss, that awoke my sleeping beauty. Dylan started taking Xyrem, a powerful narcolepsy medication that improves nighttime sleep, one month shy of his fifth birthday. Xyrem hasn’t been quite the “miracle kiss” we were hoping it would be, but it certainly improved Dylan’s excessive daytime sleepiness. After several weeks on Xyrem, Dylan slowly started to wake up. With more waking hours, Dylan now had more time (in theory) to play with his peers but although he was chronologically five-years-old, he had the skill set of a three-year-old. As you can imagine, that presented some many challenges.
This two-year gap in time translated into delayed everything for Dylan – delayed social skills, delayed motor skills, delayed academic skills – except for his humour skills which, remarkably, remained completely unscathed, if not enhanced.
In practical terms, these delays make Dylan’s day-to-day life just a little bit harder. Zippers and buttons are his nemesis; penmanship is nearly impossible; socializing is confusing and confounding; and emotional regulation needs (a lot of) fine tuning. In financial terms, I’m spending more money on therapists and programs than the Kardashians spend on make-up. Dylan takes karate and swimming to improve his gross motor skills; he works with an occupational therapist to refine his fine motor skills; he sees a psychologist to develop his social skills; he works with not one, but two tutors to advance his academic skills; and the Leap Frog videos have made a triumphant return from hibernation. Ironically, all of these programs and specialists, which are meant to minimize his delays, monopolize his still limited supply of waking hours and take away his free time to play with peers. A perpetual case of catch 22.
I suspect this is the reason Sleeping Beauty is depicted as a teenager rather than a tot in the fairy tale. It’s simply not believable, or scientifically possible, that a three-year-old could go to sleep for an extended period of time and miraculously wake up with all the skills necessary to succeed as a five-year-old. I suppose it would also be incredibly creepy to have an adult prince kiss a toddler but if you ask me, Sleeping Beauty didn’t need a prince, she needed a Jewish mother (I could devote an entire blog post to this topic alone, so for the sake of brevity, let’s just all agree that Maleficent would not stand a chance up against the likes of a Jewish smother).
Children with Narcolepsy have Scary Dragons to Slay
Narcolepsy in children as young as Dylan is quite rare and too much is still unknown or misunderstood. What we do know is that narcolepsy affects children quite differently than it affects adults. It’s important to understand the differences so we can more effectively manage the symptoms. Age and maturity go a long way in helping to regulate emotions and manage symptoms in a disorder that is physically, mentally and emotionally draining. I can tell you from personal experience, as an adult with narcolepsy myself, and as a parent of a child with narcolepsy, it is far more debilitating a curse for my son than it ever has been for me. Fortunately, my sleeping beauty has a wicked sense of humour that is sure to slay even the scariest of dragons.
Lanna Barrison is a Mommy, defunct lawyer, narcolepsy advocate and sarcasm enthusiast. Lanna and her son Dylan both suffer from narcolepsy and Lanna has made it her mission to spread awareness through humour. She (sporadically) writes a blog about her adventures in parenting a child with narcolepsy and she organizes an annual lemonade fundraiser that has become a popular community event.
It has been over two and a half years since the Diagnosis. In April of 2015, I had to explain to my then seven-year-old daughter, Ella, why we would not be throwing her a big birthday party with all of her friends as she was turning eight. To be honest, the previous 5 months had put her needs in the shadows as we carried out a family pursuit to find answers that explained how our four-year-old son, Noah, was slipping through our fingers, entering a land of darkness that none of us had ever seen or experienced. Every waking moment was spent trying to put a name to the demon we were blindly battling.
I think it is important to tell you that I have spent my entire career working with children with special needs and their families. In doing so, I had prepared myself for the day when I would be told my child had a disability. Although this sounds crazy, and perhaps it was, I had met so many individuals who had to mourn the loss of their “perfect child” as they coped with one diagnosis or another. I promised myself I would never be that parent, I would always be ready just in case. In fact, when I was pregnant with Ella and we had our 18 week ultrasound, where the ultrasound tech told my husband and me we were having a little girl, the first words out of my mouth were, “Our odds of having a child with autism just drastically decreased”, as boys are five times more likely to develop autism than girls. On the contrary, when I was pregnant with Noah, and we were told he was a boy, my husband and I looked at each other and I stated, “I will now hold my breath for the next four years of his life”, which I did. That is why, when his fourth birthday came and went, I was finally able to breathe. He was a seemingly healthy four year old boy, who was full of energy and life. I would have never believed that in 8 short months, all of that would change.
Noah had started pre-school in the fall of 2014 and we were looking forward to the following year when he would enter kindergarten and he would be at the school in which I worked. Noah’s symptoms started slow and were perhaps unrecognizable in the beginning because I had found a great way to justify what I was seeing. The first symptom was he began taking naps at pre-school, which he had stopped doing almost a year and a half earlier. Four years old is typically a time when children shorten their naps in preparation for kindergarten the following year. He had done the reverse, gone from no naps to daily naps. I figured he was putting so much energy into learning (you know those letters, sounds, shapes, and colors take a lot out of you) that he was just molding himself into the future star student he was going to be throughout his educational career. The problem was the naps got increasingly longer. What started as a 30 minute nap, turned into daily 3 hour naps. In addition to the naps, he was growing increasingly irritable. It is horrible for a parent to think his or her child is a jerk, but that is what I had surmised. He was just becoming a bratty little jerk. The symptom that first caught us off guard was the talking through the night. It started mild, and was similar to the times he had been sick with a fever and would thrash about and talk in his sleep. The only problem was it, too, started growing in intensity. One minute, I had this sweet and loving four-year old, and next thing I knew, he was sleeping through pre-school, was irritable and just plain bratty to other people, and he was holding full night-long conversations in his bed while he was “asleep”. Then it happened, the symptom I couldn’t understand or name; Noah started melting to the ground.
With my background in special education and applied behavior analysis, I was quite certain my son had found a new way to gain attention from others. He got such a rise out of everyone the first time he “melted” to the ground, as my husband and I both jumped up and went to his aide immediately. I was sure we were only reinforcing this “melting” behavior, so I instructed my husband to ignore the behavior each time it occurred. To my surprise, this did nothing to decrease the instances, and in fact, they became more and more common throughout our days. With planned ignoring failing miserably, we started picking his limp body off the floor and putting him in time out when he “melted”. After a short time, as these “melting” episodes only increased, we realized there must be more to the story. In fact, as these “melting” episodes amplified, we also found his appetite greatly increased (turning him into a very round image of his previous self), as did his “two-year old” like tantrums. My son was turning into a child I no longer knew. It was wreaking havoc on our household and my poor daughter was constantly in the shadows.
The next six months of Noah’s young life consisted of one appointment after the next. He endured appointments with the pediatrician, pediatric neurologist, pediatric cardiologist, and pediatric ENT. Each of these appointments led to multiple tests and over a five-month period he had three sleep studies, an in-office EEG, a 24-hour EEG, an MRI of his brain, and a tonsillectomy/adenoidectomy. As parents, we were told numerous times that this was all behavioral and there was nothing medically or physically wrong with him. The doctors began looking at my husband and I as though we were crazy, or the root of our son’s “behavioral” issues.
Finally, it was not a doctor, a specialist, or for that matter anyone in the healthcare field that found the answer for which we had spent so much time searching; it was a family’s persistence! By chance, with the right wording in my search engine, I came across a video of a girl having cataplexy playing ball in her backyard. She “melted” in an identical fashion to which I had witnessed my son “melting” consistently throughout our days. After seeing this video, I called my husband, crying, telling him I had an answer to this nameless demon of a disorder. I explained to him I was sure our son had Narcolepsy and Cataplexy. Without an “official” diagnosis, I researched to find who had the knowledge and the skills to help us figure out this disorder. After days of researching and contacting children’s hospitals, I finally found The Stanford Center for Sleep Sciences and Medicine, with Dr. Mignot and Mali Einen. Although over 3,000 miles away, they took the time to talk with us and help us understand what we needed to do to get the formal diagnosis and welcomed us into the Narcolepsy Family. Although this was not a family I ever willingly wanted to join, these individuals have made such a positive impact on our lives and have given my son back a future, one that was initially robbed from him, due to this disorder.
Looking back, I only wish I wish I knew the name of the family that posted the cataplexy video on-line. I wish I could write to them and explain to them the difference they made in our lives, just by getting the word out there. I made a promise to myself at that time, that I would also spend my life working to increase awareness of this invisible disorder. I do not want other families to endure the pain, heartache, and constant agony of not knowing what it wrong with their “perfect” child.
Lindsay Jesteadt, lives in Palm Beach Gardens, Florida with her husband and two children. Her youngest child, Noah started displaying symptoms of narcolepsy with cataplexy at the age of four. With a PhD in Education, she has spent her career as a special education teacher, special programs coordinator, and assistant principal at the K-12 level. I addition to the K-12 sector, she has also spent the last four years in higher education teaching graduate level courses in special education, school law, and educational leadership. Lindsay is passionate about raising awareness for narcolepsy and perhaps, one day, being able to tell her son there is a cure.
Co-founder Monica Gow presented a check last week to the department of sleep medicine at Harvard Medical School. During a visit to the Lab, Dr. Scammell shared progress being made into the mechanisms of cataplexy, a disabling symptom of narcolepsy.
In a statement detailing the discoveries made in narcoleptic mice, he shared with Monica the significance of progress being made in the field:
“With support from Wake Up Narcolepsy, Dr. Scammell’s research group has helped define which brain circuits give rise to cataplexy and sleepiness using mouse models of narcolepsy. Cataplexy is episodes of muscle weakness triggered by strong, generally positive emotions, and Dr. Scammell’s group has found that the amygdala is a key brain region for cataplexy. The amygdala is considered a brain region where “emotion meets motion”. For example, the amygdala helps produce emotional reflexes such as freezing with fear or smiling at a friend. It is now clear that in mice with narcolepsy, positive emotions (in response to tasty treats such as chocolate) are relayed by the amygdala to the brainstem, resulting in episodes of muscle weakness.
The amygdala is a complicated brain region, and Dr. Scammell’s research group will use this generous support from Wake Up Narcolepsy to define just which amygdala neurons mediate cataplexy. They anticipate that this will enable development of drugs that target just this brain circuit without causing side effects. This funding will also help generate crucial pilot data that can leveraged to obtain larger research grants from the National Institutes of Health and other organizations. Ultimately, a better understanding of these brain mechanisms will enable researchers and doctors to develop new methods to improve sleepiness, cataplexy, and other symptoms of narcolepsy.”
WUN remains deeply grateful for the opportunities to support such work through the generous contributions of our donors.
Our first Wunner Amanda Burns is already in training for the Boston Marathon. Here is why she is running and how you can support her.
Allyssa, my daughter, was diagnosed with Narcolepsy with Cataplexy in 2012 at the age of 12. Allyssa has grown up faster, and been exposed to more than a kid should have to be. Narcolepsy and the suppressed emotional state it has developed has been hard. Not hearing Allyssa laugh for fear of falling and being embarrassed in public was hard in the beginning. Endless hours of counseling to control the anger, depression, and anxiety that came along with Narcolepsy was consuming. Looking at pictures of the care free girl who laughed and played and enjoyed life before narcolepsy is heartbreaking. Allyssa and our family have grown to embrace life with Narcolepsy, and not let it take control of who she is, by gaining education, attending support groups, and educating those we meet. Running the Boston Marathon for me is about raising a voice for Narcolepsy. Allyssa will be graduating from High School this year, I feel the best gift I can give her is showing her how to raise a voice and how to help shape the future of Narcolepsy research. This race for me means shouting from the highest mountain, I have a daughter with Narcolepsy, and I will not let it defeat who she is, what she can do, or where she will go in life!
On behalf of Wake Up Narcolepsy board member Nicole Jeray who is a full-time professional golfer and a PWN awarded Dr. Ong and graduate research assistance Rylee Brower funds last week for an innovative and much needed project. The research team, based at Northwestern University, Chicago, conducted a survey that revealed most people with narcolepsy find their coping skills from word of mouth and the internet. Until now, the psycho-social impact of narcolepsy on patients has been under-funded and under-recognized by the wider medical community yet it remains a significant area of challenge for people with the condition.
Dr. Ong went onto say, “Only a small percentage are getting this kind of help from their doctor. We know clinically how people cope with narcolepsy, but we do not have any recent data showing the psycho-social impact of the condition.”
Through qualitative and quantitative data this research will significantly contribute to the holistic approach to the treatment of narcolepsy. Doctors working in the field of sleep medicine will have access to the data and eventually coping techniques that can be discussed with patients at diagnosis.
Results of Dr.Ong’s study will be published Fall 2018 and will be available to PWN on our website. Watch this space!
We are proud to have been able to grant Dr. Mignot at Stanford $35,000 for his ongoing research into narcolepsy. This week our board had the pleasure of personally handing over funds that have been donated to WUN through our many fund raising efforts over the past year. Here’s what Dr. Mignot said about the grant.
“I am really touched by all the efforts you are doing to help narcolepsy research and my lab. My lab would also not have survived in the last 2 years without the help of WUN. I am also sure that in the next few years we will succeed in getting a blood test for narcolepsy diagnosis and that many new treatments will become available, maybe even these long awaited hypocretin agonists.” —Dr. Mignot
And Wake Up Narcolepsy would in turn like to thank all our supporters who have so generously given of their time and efforts to make such a significant contribution to narcolepsy research possible. The donations we have received for narcolepsy research is making a direct impact and positive contributions to advancements in the field.
I am excited to inform you of a new addition to the Wake Up Narcolepsy (WUN) team.
Effective October 1, 2017, Claire Crisp, award-winning author and
advocate in the narcolepsy community, joined WUN as the Executive Director. Claire is a mother of three children, one of which is an eleven year old daughter, Mathilda, who has narcolepsy & cataplexy. Her daughter’s narcolepsy was triggered at the age three as a result of the H1N1 vaccine in the UK. In order for her daughter to have access to the best narcolepsy treatments and specialists, in 2010, Claire and her husband made a life changing decision and moved the family of five from England to California. In March 2017, Claire published Waking Mathilda, a book describing her daughter’s journey living with narcolepsy which was recently awarded the Internal Reader’s Favorite Silver Medal and has also been signed for film.
Claire has the passion and determination to lead WUN to achieve its mission: to accelerate narcolepsy research to find a cure and to increase awareness to improve the lives of people with narcolepsy.
We are deeply grateful for your generous donations and continued support which make our work possible. You can learn more about WUN by clicking here or reaching out to us at email@example.com.
With Deep Gratitude,
ps. We still have a couple spots available on our 2018 WUN Boston Marathon Team – click here if you are interested.
On September 9, 2017, The Hospital for Sick Children in Toronto, Canada in partnership with Wake Up Narcolepsy hosted a Narcolepsy Family Education Day for patients, families and anyone involved in the care of children with Narcolepsy. A highlight of the day was when WUN Co-founder and Board Member, David Gow and WUN Board Member Emeritus, Gordon Gow presented a check to Dr. Indra Narang, Director of Sleep Medicine at The Hospital for Sick Children to help support the narcolepsy research and awareness efforts of her team.
The day included informative lectures for patients and families, where they learned more about the condition from the clinical teams, diet and nutrition for patients with narcolepsy and advances and priorities in narcolepsy research. Other important topics lead by adult neurology, included transitioning from pediatrics to adult care, mindfulness to decrease anxieties and teen specific programming lead by adolescent medicine. The day ended with a question and answer session with the audience and an expert panel.
Approximately 90 people attended the event, which was well received by clinicians, researchers, community members and most importantly patients and families. We were thrilled with the success of this event, and welcomed the feedback of patients and their families. According to a mother of a child with narcolepsy, “I wanted to thank you for inviting us to the Family Education Day, I found it so informative. It was such a comfort to meet other parents with children living with narcolepsy.”
Wake Up Narcolepsy is dedicated to supporting narcolepsy awareness and research to find a cure. To learn more about Wake Up Narcolepsy, please visit our website HERE.
Congratulations to WUN Co-founder and Board Member, Monica Gow, who is listed as co-author on an article and poster presented at the SLEEP 2017 Conference by Dr. Kiran Maski, MD, Sleep Neurology Clinics, Boston Children’s Hospital titled “Listening to the Patient Voice: Diagnostic Delays, Disease Burden and Treatment Efficacy.”
Recently, Gow was interviewed by Sleep Review Magazine about the narcolepsy journey of her son Thomas and WUN’s role in this research project. In 2013, WUN sponsored a study aimed to provide patient perspectives on narcolepsy symptoms and treatments. Almost 1700 patients and their caregivers participated in the study. To read the article titled “Absence of Cataplexy, Pediatric Onset Increase Odds of Delayed Narcolepsy Diagnosis”, click HERE.