Latest News From Wake Up Narcolepsy
Wake Up Narcolepsy Education Day 2018
Registration for our New York Patient Education Day is now limited. To book your place please email Tammy Smith at : [email protected].
Speakers Are Booked For NY Metro Area Patient Eduction Day … Are YOU?
Experts will be sharing their experiences and first-hand knowledge with PWN on September 22nd 2018 in Tarrytown just outside NYC.
Check out the line up below and register today for free!
Registration and Coffee
Welcome and Introduction
Tammy Smith, Board Member, Wake Up Narcolepsy
“Overview of Narcolepsy and Diagnosis”
Dr Imran Ahmed, Associate Professor of Clinical Neurology,
Associate Director, Sleep Wake Disorders Center
Albert Einstein, College of Medicine, Montefiore Medical Center
“Treatment of Narcolepsy in the Real World”
Dominic Roca, MD, PhD
Connecticut Center for Sleep Medicine, Stamford Hospital
“Living with and Succeeding with Narcolepsy”
Nicole Jeray, LPGA Tour Member, Class A
“Healthy Eating with Narcolepsy”
Denise Addorisio, RDN
Community Health at Greenwich Hospital
“Behavioral Treatments for Narcolepsy”
Shelby Harris, PsyD, CBSM
Associate Professor, Department of Neurology and Psychiatry at
Albert Einstein College of Medicine New York
“Procrastination: Causes and Management”
Meeta Gowswami, BDS, MPH, PhD
Clinical Assistant Professor, Albert Einstein College of Medicine of New York
“Empower or Enable? A Mother’s Journey Parenting a Child with Narcolepsy”
Suzanne Rispoli, Wake Up Narcolepsy Board Member
Save The Date | Narcolepsy Education Day
Join us for our WUN patient education day in the NY Metro area this September. With a full line up of speakers sharing their expertise on narcolepsy, this free event is open to individuals with narcolepsy and family members. Pre-registration is recommended as spaces are limited.To register and find out more, contact [email protected]. See you there!
What Being Part Of Team WUN Has Meant To Me
As I sit in my chair with a nice cold drink (soda), I have time to try and put my thoughts together.
My training was an experience in itself and, as I’m looking at my training log, I know why I felt so good at the end of the marathon. I had put in so many miles headed for one goal: finish the marathon feeling good. Mission accomplished! Some of the interesting events that happened during my training runs included: being attacked by a pit bull and fighting him off with my bottle water, finding a lost small turtle which I carried home and released in our local lake, finding Duke (a large Doberman Pincher) who we had made friends with and was out of his yard (I ran him back home), and meeting a small female pit bull too friendly to be out lose. I took the small dog to our local animal shelter along with another dog. I guess it was my destiny to save animals.
I want to thank my wife, Paula, for her support and patience during my training runs. Her support during the marathon made my run even more special. I also want to give props to my daughter, Monica W., who helped as fundraising manager. She kept me focused, ensuring I sent my emails, texts and made my visits. Every time a met an old friend I would tell them my story and talk about Team Wake Up Narcolepsy. On one occasion during our Tuesday Night Bowling League, someone pulled out a $20 dollar bill and donated it. The same thing happened a my golf course. I’d done fundraising as a group in the past, but never by myself. So I was a bit worried, but Monica W. had so many encouraging words and she believed in me. She prepared some awesome flyers and sent emails to our local TV and newspapers. I’ve attached the article that was printed in our local newspaper (San Antonio Express News).
Even with Mother Nature against the marathon this year, my run was a very special one. Every mile was special to me because I remembered a loved one that has passed. Saying a prayer at each mile for each one: Christi Kaup, Luncia Kaup, Milton and Niako Kaup and a close friend Brian Glascow were just a few of the angels who kept me going. Thinking of Paula, Monica, Fernando II also ensured that I stayed on course. Running in Wave 4 and the crazy weather kept the fans low, so I made sure to high-five a lot of them during the course. When I crested Heartbreak Hill, I knew I had 10K to go so I doubled my efforts thanking the fans that stayed to watch and support the Wave 4 runners. It took me 22 minutes to finish the last mile because I didn’t want it my last mile of the Boston Marathon to end. I finished with so much energy and I know my special angels were why I didn’t feel the rain, wind, and cold.
Two days later I’m sitting here with the medal around my neck and still can’t believe that it has happened. Without Monica Gow, her husband David Gow and all of Team Wake Up Narcolepsy (WUN) I never would not have ever realized my runner’s dream. I will forever keep the kids, adults and their families that are afflicted with narcolepsy in my prayers. I am so thankful to all that donated and sent me good thoughts.
God Bless everyone involved.
Boston Marathon Finisher
This year, TEAM WUN included runners from all over the US who traveled to Boston after months of intense training and individual fundraising efforts. Fernando Leos, Mare Giacalone, Annie Zhang, Amanda Burs, Tanner Smith and Michael Shiavo together have raised $56,000 for Narcolepsy research which will be distributed to leading research centers for the advancement of treatments, diagnostic testing and understanding of narcolepsy.
Already the date for next year has been set on April 15th 2019 and WUN is open for registration. If you felt up to challenge of life time or want more information about being part of TEAM WUN in 2019, click here
We are still accepting donations as we strive towards a final target of $60,000 so please consider supporting our WUNNERS efforts as they recover from the race. To donate please check out our team page here
Amanda Burns Hits her local headlines. In this article, Amanda tells of her incredible accomplishment in running as part of Team WUN.
Meet our Boston Marathon 2018 Team!
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.
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!
WUN is thrilled to award Dr. Ong a grant of $3,000 for research into the psycho-social aspects of narcolepsy
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.
Wake Up Narcolepsy is a nonprofit organization dedicated to speeding narcolepsy diagnosis through greater awareness and funding medical research to find a cure.
Narcolepsy is devastating lifelong incurable sleep disorder that affects 1 in 2,000 people. Current research findings support the theory that narcolepsy is an autoimmune disorder.
Wake Up Narcolepsy has quickly become a national leader for narcolepsy research funding and awareness. The money raised directly funds research into the causes, prevention, treatments and a cure for narcolepsy. Unrestricted grants have led to breakthroughs in research and an acceleration of the understanding of this disease. We are dedicated to increasing awareness amongst the public, educators and the medical community.
– Kevin Cosgrove, Co-founder
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What Is Narcolepsy?
Narcolepsy is an autoimmune neurological sleep disorder affecting 1 in 2,000 people. Over 200,000 Americans and 3 million people worldwide have narcolepsy.
Could I Have Narcolepsy?
This is an important conversation to have with your doctor. Tiredness, fatigue and sleepiness are associated with many disorders and health risks.
Participate in Research
Every advance in the understanding of narcolepsy is based on research. Learn about opportunities to participate in research studies and clinical trials.
Faces of Narocolepsy
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.
As many of you know, when you have a condition like narcolepsy and cataplexy, you can, and rightly so, start to doubt your abilities and what you can achieve in your life.
Our son Parker was diagnosed with narcolepsy with mild cataplexy on August 1, 2013, at age 10. This was by no means a quick and easy diagnosis. He started showing symptoms in May 2011.
It hasn’t been easy and I continue to have my ups and downs. I’ve even had to take two weeks off under the Family and Medical Leave Act (FMLA) after I was first diagnosed with narcolepsy.
“Mom I don’t want to go to practice today, I’m afraid that if I go, I’ll sink.” I was on the swim team for one and half years, since June 2009.
Nicole Jeray, the Illinois native, is one of the few athletes who have made it to the professional level while suffering from narcolepsy.
At 5 years old, my already shattered life fell further apart. By 7, I was completely unable to sleep at night and would hide in my bed and sob at the torture that was the life…
Candace’s son Jerren started showing signs of narcolepsy in 3rd grade, many doctors who treated him gave no clear answers…