the network - Narcolepsy Network

THE
NETWORK
A Publication of Narcolepsy Network, Inc.
First Quarter 2013
2013 Brings Numerous
Narcolepsy-Related Events,
With More to Come in the Near Future
by James D. Bennett
A number of exciting developments, fundraisers, awareness events,
and achievements by PWNs tells a hopeful story for the first
quarter of 2013. Many of these, such as the Dream Big Concert
at Oklahoma State described on page 3, were organized locally by
individuals who simply decided to do something about narcolepsy
and took action. Dr. Mark Patterson also described several such
fundraisers in his article on Creative Ways to Give to the NN
on page 9. We continue to see a wide and wonderful range of
narcolepsy events throughout 2013!
Shawn Killham Gets
Narcolepsy Day
Proclaimed in Nebraska
An email from other NN members
regarding the effort to proclaim March
9th National Narcolepsy Day spurred new
member Shawn Killham to take action at
the state level. He checked on Nebraska’s
state web site, submitted information about
narcolepsy and the date, and on February
5th, 2013, received a phone call from
the governor’s office informing him of
his success.
He received an
official copy of the proclamation (pictured)
in the mail.
Shawn Killham
Great job, Shawn!
Now, who will get Narcolepsy Day
proclaimed in their state next?
In This Issue
• 2013 Narcolepsy-Related Events 1
- Shawn Killham Gets Narcolepsy Day Proclaimed
in Nebraska
- Narcolepsy Presentation at Brown University
Medical School
- D.C. Family Support Group Attends Presentation
by Dr. Judith Owens
- “National Sleep Walk” on the National Mall,
Washington, D.C. - Flygare Publishes Wide Awake and Dreaming
- First Annual Narcolepsy Bed Race Coming
to Roanoke, VA
- Dream Big! Narcolepsy Walkathon 2013
1
1
2
2
2
3
3
• A Word from Our Executive Director 3
• The Wakeup Diet™ for Narcolepsy:
A Chronobiological Approach
4
• “Ask the Doctor” Q&A
with Dr. Quentin Regestein 6
• Remembering Winnie Burnett
7
• Nicole Jeray Swings for Sleep Through 2012 8
• Creative Ways to Give to NN
•Primary Hypersomnias 9
10
Narcolepsy
Presentation at
Brown University
Medical School
On Thursday, October 25, 2012, two
NN members shared their narcolepsy
and sleep-related patient experiences
with medical and graduate students
from Brown University Medical School
during a unique seminar dedicated to
sleep physiology and the most current
clinical information about narcolepsy.
Taught by the well-known adolescent
continued on page 2
1
Narcolepsy Presentation at
Brown University Medical
School continued from page 1
sleep researcher Mary Carskadon,
Ph.D., and her clinical counterpart
Katherine Sharkey, M.D., Ph.D., this
seminar enabled students to learn
about sleep physiology at the cellular
and molecular level, as well as from
a behavioral and clinical perspective.
Narcolepsy Network President Sara
Kowalczyk and member Vanessa
Oliveira attended the event to share
details about their own experiences
with symptom onset, diagnosis,
and treatment.
From left to right: Mary Carskadon, Vanessa Oliviera, Sara Kowalczyk, and
Katherine Sharkey
D.C. Family Support Group Attends Presentation by Dr. Judith Owens
On February 9th, D.C. Family
Support Group members went
to Children’s National Medical
Center for a joint talk given by Dr.
Owens, a noted expert in pediatric
sleep medicine and the Director of
the Sleep Clinic at Children’s, and
Kathy Ziesel, an attorney at the
D.C. Children’s Law Center. Owens
and Ziesel discussed identifying and
meeting the needs of kids and teens
with narcolepsy at school, including
the effects of narcolepsy on behavior
and learning in the classroom, as well
as accommodations to consider for
504 and IEP plans. The event was
jointly sponsored by the Narcolepsy
and Hypersomnia Support Group of
the Greater Washington D.C. Area,
and Children’s National Medical
Center.
“National Sleep Walk” on the National Mall,
Washington, D.C.
Coinciding with National Sleep Awareness Week, author and narcolepsy
advocate Julie Flygare led her third annual National Sleep Walk. The Walk
began by the Lincoln Memorial and followed the Reflecting Pool pathway, for
about two miles. Afterward, walkers enjoyed refreshments, and Sleep Spirit
awards were given out.
Flygare Publishes Wide Awake and Dreaming
Longtime narcolepsy advocate and blogger Julie Flygare realized one of her
dreams recently when she published her memoir, Wide Awake and Dreaming, on
December 15, 2012. It describes her experience with narcolepsy,
dealing with both her struggles and triumphs in facing the
condition. So far, the book has been well received across
the blogosphere and social media, and Flygare is actively
promoting the title through events and appearances.
Learn more and get a copy at JulieFlygare.com.
2
continued on page 3
A Word from Our Executive Director
by Eveline Honig,
M.D., M.P.H.
Dear Friends,
I hope that the New Year is off to a
good start for all of you! As I am writing
this, it is still cold and snowy in the
Northeastern part of the country. I
recently returned from a very special
event in Oklahoma. Oklahoma State
University student Kevin Gonzales
organized a concert to raise money
and awareness for Narcolepsy and for
Narcolepsy Network in honor of his
fiancée Megan who was diagnosed
in August 2012. After seeing Megan
struggle daily, Kevin wanted to do
something to help people who share
her struggle. In his own words, Kevin
said that he chose Narcolepsy Network
because he wanted to support an
organization that focuses on awareness
and research. He decided that the
money raised at the concert—more
than $2,000—will help raise awareness
for others who live with narcolepsy
and are not aware of it. Not only is this
the most beautiful Valentine’s Day gift
I have ever heard of, but it is also an
inspirational idea for others, who want to
do something for their loved one.
This Spring we attended the National
Sleep Awareness Round Table and
National Sleep Foundation meetings and
had a booth that garnered a lot of traffic.
Eveline Honig with Kevin Gonzales and
Megan Phillips at the Dream Big Concert
at Oklahoma State University
Many of us are very busy planning walks
to raise awareness and we even have our
first ever bed race. In addition, we are
planning to attend some meetings where
we will meet with teachers and school
principals. It is important that we start
our outreach to the teaching community
to fulfill the promise we made in our
Eveline Honig and Suporn Sukpraprut
Year End appeal. We have worked very
successfully with school nurses, but many
people thought it could be equally or
even more important to reach out to
teachers. This is a beginning step, and
I hope we can “catch” children with
narcolepsy or other sleep disorders early
by contributing to the development of
well-informed teachers.
We look forward to an even more
productive year in 2013, and I hope to
hear from many of you. Share with us
your stories or concerns, and share with
us your desire to volunteer. Please let us
know what you would like to do, such
as helping at the conference, writing an
article, editing articles, or any other ideas
you may have.
With warm wishes,
Eveline Honig, M.D., M.P.H.
2013 Brings Numerous Narcolepsy-Related Events, With More to Come in the Near Future
continued from page 2
First Annual Narcolepsy Bed Race Coming to Roanoke, VA
Some of the fastest and most fabulous beds in the Old Dominion rolled out on Saturday, March 9 for the Narcolepsy Bed Race.
Beds of all shapes and sizes mounted on wheels competed on a special course at Roanoke’s Covenant Presbyterian Church, with
prizes awarded to both the fastest racer and the best design. This was one challenge the participants could take lying down. For
race day pictures, visit www.narcolepsybedrace.org.
Dream Big! Narcolepsy Walkathon 2013
Hudson River Park, a scenic riverside greenway on Manhattan’s West Side, is the location for the first ever New York City
Dream Big! walkathon. This walk will raise awareness about narcolepsy and support Narcolepsy Network, and will take place
on Saturday, April 27 (rain date is the following Saturday, May 4). If you live in or near the NYC metro area, please come out
and join us on our walk for fun, friendship, and food. For more information, visit Narcolepsy Network’s website and our
soon-to-be live NYC walk website narcolepsynycwalk.org. Also stay tuned for details about our upcoming walks in the
Chicago and Boston areas.
3
The Wakeup Diet™ for Narcolepsy:
A Chronobiological Approach by James T. Hawes
Copyright © 2012 by James T. Hawes. All rights reserved.
Nearly all my life, I’ve suffered with narcolepsy and cataplexy.
Neurologists at two different sleep labs examined me, first in
the 1970s and then in the 1990s. My doctors prescribed three
different medications. None of these medications helped.
Instead, they worsened my suffering and converted it to
agony and despair.
This situation was a blessing in disguise. It inspired me to
start applying lessons that I’d learned about coping with my
disorder. For instance, in high school, I was a cross-country
runner. As an athlete following the team’s training schedule,
I learned that strenuous, regular exercise could moderate
the appetite. Regular exercise could also cause sleep and
wakefulness to occur on a predictable schedule. Yet eating
greasy or starchy foods by day could upset the schedule and
inhibit performance.
Chronobiology is the study of biological rhythms, particularly
the circadian rhythm. I use chronobiological methods to cope
with my narcolepsy and cataplexy. My methods are diet
and exercise: I consume only small protein meals during the
day, but all food groups at night. Before eating, I exercise
twice daily. I developed the program over many decades,
but have followed it exclusively since 1992. (See: www.
wakeupdiet.com)
Zeitgebers
Typically, narcolepsy damages the hypothalamus gland in the
brain. The hypothalamus is part of a circadian pacemaker.
Many behaviors depend on this pacemaker. For example,
hunger, thirst, body heat, the sleep-wake cycle, physical
activity, even sex drive all depend on this system!
From Sahelian, Ray, Melatonin: Nature’s Sleeping Pill, p. 53.
Figure 1. Inputs of the circadian pacemaker
Now let’s look at the inputs of the pacemaker. Athletes know
that we can program the pacemaker by altering our habits.
Chronobiologist Dr. Charles Ehret notes that we can entrain
the pacemaker by changing our meal schedule (Figure
1). In other words, we can adjust the pacemaker based on
what and when we eat. The same goes for changes in light
and darkness, temperature, physical activity and our social
4
schedule. Ehret calls these cues zeitgebers (“time givers”).
Zeitgebers fine-tune the circadian pacemaker. This idea is the
basis of my Wakeup Diet™. The object is to coordinate our
sleep-wake cycles with everyone else’s by synchronizing our
pacemakers. That is, particular, regular habits emulate what
narcoleptic pacemakers can’t do automatically.
A Day on the Wakeup Diet™
Wake up
Portion Control
Strength
Exercise
Balanced
Breakfast
with Protein
Portion Control
Light
Protein
Lunch
Work
PM
Apple at
Halftime
Dinner with
Starches
Sleep
Portion Control
Portion Control
Shutdown
Work
AM
Day Plan
PM
Snack
Portion Control
Endurance
Exercise
Figure 2. Sample Day Plan for Wakeup Diet™
How does the diet work? Since this diet supports circadian
health, timing is essential. I eat, exercise, and sleep on a
prescribed schedule. Breakfast includes
protein plus a few carbohydrates: A tin
of water-packed sardines. A quarter cup
of bran flakes with a few raisins. Plus a
banana. The usual beverage is water or
unsweetened, plain soymilk. When I eat
hot cereal, I heat only two tablespoons
(never more!) of oatmeal or MaltEdamame
O-Meal. (Hot cereals and granola,
though they include some protein, are
largely “sleepy starches.”) If no amount
of these starches allows alertness, I
switch to a carb with a lower glycemic
index. For example, green beans. (62
Natural Ways to Beat Jet Lag provides a
handy list of protein and carbohydrate
foods. Also see Agatston’s South Beach
Black bean burger
Diet.)
If I awake in the middle of the night, I
eat a small, starchy pre-breakfast. Then
I soon drift asleep. In the morning, I
exercise. Then I eat only the breakfast
protein (sardines).
I exercise before breakfast and dinner.
My morning workout includes sit-ups,
Greek yogurt
stretches with and without a resistance
band, leg lifts, reverse sit-ups and light weights, etc. On
alternate days, I add pushups. Before dinner, I exercise again.
Evening exercises include resistance band stretches, rowing,
continued on page 5
The Wakeup Diet™ for Narcolepsy: A Chronobiological Approach continued from page 4
some light weights, a long ride on a stationary bike, etc. On
alternate days, I add a power walk on a treadmill. The idea is
this: Morning exertion snaps me wide awake. Similarly, evening
exercise tires me, so that I sleep better. Interested in trying
the program? I suggest tailoring your routine to your life and
fitness level.
for people with narcolepsy. This diet achieved an 18-percent
alertness improvement on the Epworth scale. Dr. Sidney
Baker’s The Circadian Prescription also parallels my diet. Baker’s
program promises better sleep, energy, and mental acuity.
Results & Independent Research
Note: Each of us may react differently to major changes in diet,
activity levels, and so on. Please consult with your health provider in
making such changes.
The Wired magazine blog discusses related research on
glucose and sleep: Researchers concluded that glucose
might cause sleepiness by suppressing the neurotransmitter
For lunch, I eat a bun-less, vegan soy burger. The beverage is
water. There are no midday naps, as they would upset circadian orexin. A study at La Trobe University may support the use
rhythms. At dinner, the main course can be home-cooked or a of carbohydrates for enhanced sleep. Researchers found
that non-narcoleptic people become sleepy after consuming
prepared dinner. (Beverage: Plain, unsweetened soymilk.) At
the end of dinner, I eat a starchy snack. (Natural peanut butter glucose, but PWNs become even sleepier. Here’s where
and raisins on bread, plus a cup of non-fat, plain Greek yogurt.) narcoleptic behavior might provide an insight into new
treatments for everyone.
For me, the snack provides a deep sleep almost immediately.
Scheduling exercises cut my number of daily attacks (sleep
and cataplexy) from five to three. Scheduling food groups
cut my number of attacks from three to one or often, none.
Hypnagogic effects are way down. The protein meals suppress
appetite between meals.
Scan for free information.
I find that the program sharpens daytime alertness and
offers more refreshing, better integrated nighttime sleep.
An acquaintance who is on the diet reports similar results.
A recent study at Duke University is consistent with my
positive experience. The Duke diet is a high-protein regimen
Further Reading
• www.wakeupdiet.com: Web home of my diet. How-to,
links, FAQs.
• Body Rhythm: The Circadian Rhythms Within You, by Lee
Weston. We can program the body by changing our habits,
pp. 62, 94.
• The Circadian Prescription, by Sidney MacDonald Baker,
M.D. Circadian aspects of medication, p. 9; circadian aspects
of disease, pp. 187-188 . Baker’s Circadian Diet (CD) is
similar to the Wakeup Diet™. CAUTION: CD isn’t for
PWN. PWN should avoid Baker’s “rhythmic shakes” that
contain yogurt! Baker cites Charles Ehret for inventing the
daytime protein, nighttime carbohydrate strategy, pp. 4-5.
• “Diet Therapy for Narcolepsy,” by A.M. Husain, W.S. Yancy,
Jr., S.T. Carwile, P.P. Miller, E.C. Westman, in Neurology
62. High-protein program, but reduces carbs, even at night.
This ketogenic program also requires high fat content.
• Melatonin: Nature’s Sleeping Pill, by Ray Sahelian, M.D.
Circadian pacemaker diagram, p. 53; supports proteins by
day and carbohydrates by night, pp. 64-65.
• Overcoming Jet Lag, by Dr. Charles F. Ehret & Lynne Waller
Scanlon. What circadian pacemaker affects, p. 21; origin of
therapy, p. 51; diet, pp. 59-60.
• 62 Natural Ways to Beat Jet Lag, by Charles B. Inlander, &
Cynthia H. Moran. Circadian and homeostatic clocks, p.
3; influences on resetting, p. 14; “proteins perk and carbos
crash,” p. 116; carb & protein foods list, pp. 147-152.
• “Sleepiness After Glucose in Narcolepsy,” by D. Bruck,
S. Armstrong, G. Coleman. Journal of Sleep Research 3. La
Trobe University study: Concludes that PWN become
unusually tired after glucose consumption.
• The South Beach Diet, by Arthur Agatston, M.D. Glycemic
index concept, p. 20; low vs. high-glycemic carbs, pp. 70-74.
• “What is the Best Time of Day to Exercise? Research
may help determine the best time of day for exercise,” by
Elizabeth Quinn. About.com (accessed October 4, 2012).
• “Why Sugar Makes Us Sleepy (And Protein Wakes Us Up),”
by Jonah Lehrer. Wired Science Blogs/Frontal Cortex,
Wired.com/wiredscience (accessed October 26, 2012).
Sugars suppress orexin/hypocretin.
• Narcolepsy: Pathophysiology, Diagnosis, and Treatment, by
Christian R. Baumann, Claudio L. Bassetti & Thomas E.
Scammell, eds., with this article…
• “Etiology and Genetics of Human Narcolepsy,” by
Emmanuel Mignot. Hypothalamus damage as cause
of narcolepsy, p. 13.
5
“Ask the Doctor” Q&A with Dr. Quentin Regestein
Narcolepsy Network Medical
Board Member Dr. Quentin
Regestein answers narcolepsy
questions via Facebook. Select
questions and his answers
are below.
Why do people with narcolepsy
have varying symptoms, especially
why do some have cataplexy and
some don’t?
Diseases get defined and classified
according to experts’ judgment calls.
The experts who listed sleep disorders
in DSM-IV wondered whether having
narcolepsy would require a person to
also have cataplexy. People who suffer
cataplexy probably have relatively worse
symptoms. However, with or without
cataplexy, narcolepsy makes life tougher.
Narcolepsy is controlled by scores
of genes that predispose a person to
narcolepsy but do not automatically
cause it. A combination of different
genes plus childhood infection and
allergy probably accounts for most
narcolepsy.
PWNs lack a substance called orexin,
also called hypocretin, which is secreted
by nerve cells lying deep in the brain.
Orexin influences appetite as well as
energy regulation. PWNs’ orexinsecreting cells were probably damaged
during childhood by allergic responses
to viral or strep infections. PWNs
without cataplexy probably did not
sustain as much childhood damage to
their orexin cells.
In Finland, a flu vaccination gave many
children narcolepsy. Most but not all
of them also got cataplexy. This same
vaccination induced different symptom
profiles. PWNs are more likely to have
been born in March and less likely born
in September. This might mean that flu
infection in their mothers, which would
be more common in winter, played a
role in their becoming narcoleptic.
Some say that gene differences cause the
sleepiness of narcolepsy, while allergic
reactions cause cataplexy. However it
6
happens, narcolepsy and cataplexy are
usually found together. Narcolepsy can
also result from other causes, such as
inherited neurological conditions or
brain trauma. Genes might make some
people more susceptible to the effect of
brain trauma.
To summarize, differences in the
symptoms of a complicated condition
like narcolepsy are probably explained
by different genes and different
experiences.
How likely is it that my narcolepsy
with cataplexy will get worse as I
age?
The afflictions of narcolepsy appear
relatively early in life and remain stable
thereafter. Symptoms do not usually
progress. All of us slow down with
age, so narcolepsy may amplify the
increasing slowness in task completion
that accompanies age.
Narcolepsy can devastate
relationships. Has any research
examined marriages where one
partner has narcolepsy? Are there
any ways to strengthen a marriage
to deal with this condition and
prevent divorce?
I can find no systematic research on how
narcolepsy affects marriage. Anecdotes
suggest many ways this can happen.
PWNs’ spouses might enjoy lengthy
evening events like concerts, sports
events or evening parties that sleepy
people tolerate poorly. Sleepiness and
cataplexy can affect the couple’s love
life, as can the deep sleep of Xyrem,
which can also interfere with nocturnal
childcare.
One patient with narcolepsy sat on a
couch at parties to manage the cataplexy
that came with the sudden emotional
rush of party fun or laughing at jokes.
Another patient would have a cataplectic
attack whenever his 12-year old son’s
behavior made him lose his temper so
much that he tried to strike the child.
Predictable routines, including
planned naps, can help pace family
life. Managing a spouse’s narcoleptic
symptoms depends
on the motivation,
psychological
maturity, spiritual
development, and
willingness of
marriage partners
Dr. Quentin
to adapt. Loving
Regestein
spouses who find
workable arrangements further nurture
their attachment and strengthen their
relationship.
Narcolepsy, like any problem, can add to
other sources of marital conflict.
A marriage is a system comprised of two
people. One spouse’s troubles explain
marital conflicts less than both spouses’
attitudes and responses.
Spouses with unresolved problems
might seek psychotherapeutic help from
a psychiatrist experienced in treating
PWNs or from other psychotherapists
who understand narcolepsy. If no such
therapists are available, cognitivebehavioral therapy might be a good
choice. This typically involves
recording each untoward event a person
experiences, what they did at the time,
how they felt, and what they might
have done differently. This process
documents problems and helps focus
subsequent discussions.
The effectiveness of psychotherapy
depends more on the therapist’s skill
and the patient’s motivation than
on any specific treatment method.
Besides psychotherapy, spouses might
talk together with clergy or a close
confidante. People with narcolepsy who
are experiencing marriage problems and
want to deal with them can find help.
Please do not take this article as
advice about what any particular
individual should do, since we all
differ. Finding the optimal way to
relieve a medical problem generally
takes discussions between an
informed person and an informed
care provider.
Remembering Winnie Burnett
Winifred J.
“Winnie”
Burnett was
a longtime
supporter of
Narcolepsy
Network and
the narcolepsy
community, an
advocate for
the narcolepsy cause, and a good
friend to those who knew her. She
passed away on June 23, 2012. This
past November, Narcolepsy Network
received a generous check from
Winnie’s estate, along with a letter
from her friends Linda and Allan
Koblenzer and Maria and Roger
Markovics. Linda also has narcolepsy
and was part of Winnie’s support
circle. Since the letter commemorates
the life of this extraordinary PWN so
movingly and well, we have reprinted
an extended excerpt.
A Tribute
“Winnie” Burnett had a plan for her
life after retirement from state services.
She knew basically what she needed
and along the way, especially after the
death of her one remaining brother, she
found herself painfully aware of what it
meant to be alone, past mid-life, without
spousal or family support but with a
health history and needs that would not
go away. While a Navy WAVE [Women
Accepted for Volunteer Emergency
Service] in WWII she had begun
experiencing unexplainable sleep attacks
on duty, was honorably discharged
and, surprisingly perhaps, diagnosed
with narcolepsy and sent home with a
prescription for Dexedrine and little
else, certainly no help from the VA or
understanding from a clueless family;
farming with a war on was no mean
feat with four older and two younger
brothers joining up at some point before
war’s end. Our resilient lady soldiered on
at home as needed, then left to live and
work in Albany.
When we met in a self-help group
originally formed with ANA in the
1950s, Winnie was a faithful participant
and continued to be so
when Narcolepsy Network
founders broke with ANA. My
husband Allen and I became
her means of transportation to
meetings and several conferences
over the years. When a move
from a small flat in the city to
the 11th floor apartment of an
affordable independent living
complex was unavoidable due to
worsening scoliosis, developing
diabetes, and hearing loss, not to
mention a sleep apnea diagnosis after
polysomnography at the only sleep
center in our area accredited by the
American Academy of Sleep Medicine,
the former Capital Region Sleep/Wake
Disorders Center (now St. Peter’s
Sleep Center), Winifred plowed ahead,
characteristically like a healthy plant, in
slow motion but by no means in passive
or peaceful mode. Up until a second
move to an assistive living facility two
years ago, she was in control, having
acquired a financial planner, a lawyer,
a good handle on her state health care
package, and finally devoted friends she
entrusted in a living will with power of
attorney and a request to my husband to
act as health care proxy on her behalf.
He accepted without hesitation or even
consultation at the time, assuming he
and I would act in tandem, he the driver
and me along for the ride.
What a ride it was! Welsh poet Dylan
Thomas wrote, “Do not go gentle into
that good night…Rage, rage against
the dying of the light.” One of the
more serious of Winnie’s problems was
an emergency visit straight from the
office of a retina specialist to our area’s
only ophthalmology specialty center to
undergo treatment (a most terrifying and
painful procedure involving only local
anesthesia and the full cooperation of
the patient) of a herpes virus infection
that surfaced like shingles from latent
chicken pox. Never have I witnessed
such courage and determination to save
her eyesight. To not be able to read was
to die!
We continued to navigate the mire that
is our country’s health care system with
Winifred still in charge. A refusal to
curtail efforts to manage
her own medical appointments (taxi
service, etc.) was rightfully overcome
by the rules of her new home and new
visits were then scheduled contingent
upon real need and our availability.
Do not misunderstand; she was not a
hypochondriac, far from it, just a healthy
soul with a flawed body, not much time
to improve matters, and fierce need to
let go only when “God willed it and the
creek did rise.”
...........
Due to a tendency to compartmentalize
her daily activities, members of her
management team didn’t always know
of the extent or nature of the roles the
others played in her plans and life. Her
memorial service was an emotional
outpouring like no other experienced
by most who attended. An effort just
recently to pin down this remarkable
PWN resulted in a little game of
honest retrospection by those sharing
her last hours. Could we describe “our
Winnie” in adjectives only to help others
grasp the impact she had on our lives?
First came the best: dedicated, loyal,
appreciative, generous, compassionate,
witty, honest, determined, strong-willed.
Then, amid laughter and tears, came the
rest: imperious, impatient, abrupt, sharp,
ornery, rude, bossy, crafty. Wonderful
enigma! We loved her.
Winnie’s “A Team”
Linda (PWN) and Allan Koblenzer
Maria and Roger Markovics
7
Nicole Jeray Swings for Sleep Through 2012 by The Network staff
We in the NN community have followed Nicole Jeray’s Swinging for Sleep campaign
with great interest since she began it in 2011. So we’re thrilled that in 2012 Nicole
raised more than $35,000 to be shared equally between NN and Wake Up Narcolepsy.
Thank you to Jazz Pharmaceuticals, and to the many individual donors who sponsored
each of Nicole’s 121 birdies while on the LPGA tour. Here are some photo highlights
of Nicole’s successful campaign over the past year.
Nicole playing in the 2012 Credit Union Classic
Nicole won the 2012 Heather Wilbur Spirit Award, given each year to a golfer
nominated by her peers for exemplifying dedication, courage, perseverance,
love of the game, and spirit toward achieving goals as a professional golfer.
8
Nicole at the Wegmans LPGA
Championship, with golf bag that
has “narcolepsy” printed on the
shoulder strap.
continued on page 9
Creative Ways to Give to Narcolepsy Network by Mark Patterson, MD
Thirty-One Gifts Party
Popular methods of supporting
Narcolepsy Network (NN) in the
accomplishment of its mission include
sponsored walkathons, monthly and
membership dues. Recently, some
alternative approaches have come
forward that allow us to see ways we
can hold similar events in our own
communities.
“Dining to Donate”
at Applebee’s Restaurant
Ken and Katelynn O’Connell at Applebee’s
Katelynn (Katie) O’ Connell was
diagnosed with narcolepsy when she was
15 years old. Since then, both she and
her family have become very involved
with NN. They have attended three
annual conferences and her mother,
Louise, has been on the NN Board of
Trustees since October 2012.
restaurant. Louise and Katie spread
word about the event on their
Facebook pages. Fifteen percent of the
bill of those involved in the program
was donated to NN. Additionally,
some family friends who were not able
to attend provided direct donations.
Last fall, they decided to take
advantage of Applebee’s “Dining to
Donate” program to raise money and
awareness for NN while allowing
their family and friends to enjoy a
delicious meal. Katie is a hostess at
the Applebee’s in Woburn, MA, had
seen the restaurant support other local
events with this program, and decided
to use it to help NN.
The event was held on Sunday
December 2, 2012 at the Woburn
Overall, the O’Connells felt the
simplified process provided by
Applebee’s was very beneficial, making
this an approach that others could
easily use at their local restaurants.
Some advice they had for others was
to widely publicize the event, using
social media, local event calendars, and
direct contact with friends and family.
They also felt that Applebee’s was
receptive to having similar events in
the future.
Nicole Jeray Swings for Sleep Through 2012 continued from page 8
In March 2011, then 15 year-old
Kendra was diagnosed with narcolepsy.
Over time, the family found that
they often relied on NN for support,
guidance, and information. Because
of this assistance, they decided to
give back to NN so that others could
benefit. A family friend is a Thirty-One
Gifts consultant (thirtyonegifts.com) and
they approached her about hosting a
party for NN. She immediately agreed
and the event, held in November
2012, wound up being one of her
largest parties, generating $300
for NN. As Kendra’s mother noted
“Narcolepsy Network has truly been
one of the most informative and
supportive organizations we have
utilized in our journey.”
Bracelets for Narcolepsy
Awareness
Two years ago, Joann’s
grandson was
diagnosed with
narcolepsy and
cataplexy at the
tender age of five.
Now seven, he and
his family face the
A decorative
daily struggles of
display of the
dealing with this
NN narcolepsy
condition in such
awareness
a young child. In
bracelets on a
member’s wrist.
an attempt to help
raise awareness and
help NN in its efforts, he had a fund
raiser selling narcolepsy bracelets. As
a result of his efforts, $300 was raised
for NN. As his grandmother notes,
they “hope to make a difference.”
How Can You Help?
As you can see, many local, grass-roots
options are available to raise awareness
about narcolepsy and help NN with
its nationwide efforts to provide
education, advocacy, and support for
those with this chronic condition.
No special skills are needed, just a
willingness to do your part “to make
a difference.” Will you?
9
Important Finding on Primary Hypersomnias
NN Medical Advisory Board Member David Rye Publishes
Important Finding on Primary Hypersomnias in Science
Translational Medicine by James D. Bennett
Just after the previous issue of
our newsletter went to press, NN
learned that Dr. David Rye* of
Emory University had published
results of a study that offers some
hope to people with certain types
of idiopathic hypersomnias. The
study ran in the journal Science
Translational Medicine, Volume 4, Issue
161, November 2012; its full text is
available online (stm.sciencemag.org/
content/4/161/161ra151.full).
Interviewed in our 2010 Annual Report,
Dr. Rye described his work investigating
a set of primary hypersomnias whose
cause appears to be different than
the hypocretin/orexin deficiency that
underlies narcolepsy. Rye found that a
significant group of patients with these
non-narcolepsy hypersomnias appeared
to be “making their own Valium,” in
other words, creating a chemical which
kept them asleep for up to eighteen
hours per day. Using bioassays to
measure various substances in these
patients’ cerebrospinal fluid, Rye found
evidence indicating to interactions
between this unknown Valium-like
substance and gamma aminobutyric acid
(GABA) receptors in the brain. These
GABA receptors are where alcohol
and most sedatives work, making them
potential sites for an internally made
sedative to interact.
The recent study adds to the evidence
supporting Rye’s hypothesis that the
unknown substance makes his patients’
GABA receptors extremely sensitive,
causing them to respond as if to a
sedative. The Science Translational
Medicine paper describes how Rye
and his colleagues targeted GABA
receptors by giving the drug Flumazenil
to a group of patients with primary
hypersomnias. These patients all
showed improvement in wakefulness
and vigilance to various degrees.
While most treatments for excessive
sleepiness involve stimulants that
increase alertness, Flumazenil works
differently, disrupting GABA receptors
and decreasing sleepiness. Rye likens
his patients’ situation to trying to drive
with the parking brake on; the answer,
he says, is not to give more gas through
stimulants, but to turn off the brake by
decreasing the sleepiness.
Flumazenil is typically used to treat
sleeping pill overdoses, blocking the
ability of these sedatives to bind to the
GABA receptors. Because Flumazenil
worked with patients with these
hypersomnias yet has shown no effect
on wakefulness
for patients
without such
hypersomnias,
the GABA
mechanism
appears to be
implicated in this
type of excessive
Dr. David Rye
sleepiness.
What remains
to be discovered is exactly what
mystery substance Rye’s patients may
be producing. More work remains to
better understand the GABA pathway
and neurochemical mechanism
in play. Further studies will likely
examine treatment with Flumazenil
in a larger sample of patients. Still,
this is an early yet very positive sign
for people suffering from idiopathic
hypersomnias, since this promises a
potential treatment for some of these
disorders. It’s also good news for the
wider sleep community, as Rye and his
colleagues’ work may yet yield new and
beneficial insights into fundamental
sleep processes.
*It is important to note that Dr. Rye
and his colleagues Dr. Andrew Jenkins
and Dr. Kathy Parker are co-inventors
on patent rights held by Emory University.
Emory and the inventors could potentially
receive royalties derived from the intellectual
property related to this research.
Save the Date for Our 2013 Conference
at The InterContinental Hotel Buckhead
Make plans to meet us in Atlanta!
Narcolepsy Network’s 2013 Conference will be held
at the InterContinental Hotel Buckhead
in Atlanta, Georgia, October 18-20.
More information will be available soon!
We are planning a full schedule of speakers, workshops, and
events for our 28th annual conference.
The InterContinental Hotel Buckhead
10
We hope to see you there!
MEDICAL ADVISORY BOARD
Emmanuel Mignot, M.D., Ph.D., Chair
Stanford Center for Narcolepsy
Palo Alto, CA
Stephen A. Amira, Ph.D.
Brookline, MA
Neil Feldman, M.D.
St. Petersburg, FL
Meeta Goswami, M.P.H., Ph.D.
Narcolepsy Institute
Bronx, NY
Lois Krahn, M.D.
Mayo Clinic
Scottsdale, AZ
J. Gila Lindsley, Ph.D.
Lexington, MA
Quentin Regestein, M.D.
Brigham & Women’s Hospital
Boston, MA
David B. Rye, M.D., Ph.D.
Emory University School of Medicine
Atlanta, GA
Thomas E. Scammell, M.D.
Beth Israel Deaconness Medical Center
Boston, MA
Martin B. Scharf, Ph.D.
Center for Research in Sleep Disorders
Cincinnati, OH
Lawrence Scrima, Ph.D.
Sleep-Alertness Disorders Center, Inc.
Aurora, CO
Jerome Siegel, Ph.D.
UCLA Neurobiology Research
Sepulveda, CA
Michael J. Thorpy, M.D.
Sleep-Wake Disorders Center
Bronx, NY
Joyce A. Walsleben, R.N., Ph.D.
Sleep Medicine Associates of NYC
New York, NY
Narcolepsy Network, Inc.
National Office
129 Waterwheel Lane
North Kingstown, RI 02852
TOLL-FREE (888) 292-6522
(401) 667-2523 telephone
(401) 633-6567 fax
e-mail:
[email protected]
www.narcolepsynetwork.org
The contents of this newsletter are for
informational purposes only and are
not to be construed as medical or legal
advice. If you have questions, please
consult your physician or attorney.
This newsletter is published quarterly
as a benefit of membership. No portion
of this newsletter may be reprinted for
commercial or noncommercial purposes without the advance written approval
of Narcolepsy Network, Inc. Requests
for permission to reprint should be
directed to:
Narcolepsy Network, Inc.
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North Kingstown, RI 02852
or email
[email protected]
We welcome contributions to this
newsletter. Please send all comments
regarding the newsletter to:
Jamie Bennett
c/o Narcolepsy Network, Inc.
129 Waterwheel Lane
North Kingstown, RI 02852
or email
[email protected]
Deadline for Submissions:
Submissions are always welcome and
are reviewed on an on-going basis.
They will be used whenever possible, as
time and space permit.
PEDIATRIC ADVISORY BOARD
Agnes Kenny, M.D.
Peru, Indiana
Suresh Kotagal, M.D.
Rochester, Minnesota
Suzanne Moore-Darms
Marlton, New Jersey
Michael Eig, Esq.
Chevy Chase, Maryland
Mali Einen
Menlo Park, California
Michele Profeta
Atlanta, Georgia
The Network thanks
Jazz Pharmaceuticals and
Teva Pharmaceuticals for an
unrestricted grant that has
partially funded graphic design,
printing, mailing, and other
costs of publishing and
distributing this issue.
BOARD OF TRUSTEES
Sara Kowalczyk, M.A., M.P.H.
President
Boston, MA
[email protected]
Sarah DiDavide, Vice President
River Grove, IL
[email protected]
Heidi Shilensky, Vice President
Brooksville, FL
[email protected]
Louise O’Connell, Treasurer
Woburn, MA
[email protected]
Sue Brockway Carella, Founder
Redwood City, CA
[email protected]
Mark Patterson, M.D., Ph.D.
Roanoke, VA
[email protected]
Andrea Podolsky, J.D.
New York, NY
[email protected]
Suporn Sukpraprut, Ph.D.
Christiansburg, VA
[email protected]
Anthony Tam
Santa Clara, CA
[email protected]
Mee Warren
New York, NY
[email protected]
Trustee Emerita
Niss Ryan, Founder
Rochester, NY
On the back cover:
Joyce Scannell never knew her paternal
grandfather, this poem’s author. He died in the
late 1920s. She writes,
“…my mother handed me an envelope after
my father died with my grandfather’s personal
poems and newspaper clippings. I learned that
he was a newspaper columnist for a paper in
Chicago, and that he wrote many poems, some
of them funny and some of them political. Later
I found out he wrote for the Iowa Daily City
Press in a daily column called ‘Chords and
Discords,’ under the pen name ‘The Harp.’ He
also wrote articles in The Iowa Magazine. His
pen names (Harp O’Tara, Harper…) are so Irish
– both his parents came from Ireland during the
potato famine. They met, fell in love, got married
in New York, and then moved to Iowa to raise
ten children. My grandfather was one of them.
The Harp was his favorite pen name. I knew that
growing up, as told to me by my father.”
11
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Creative Corner
Morning
Sing me a song of the crimson east
When the night is dying.
The song of the farmer maid
With the winged lark vying,
The hum of the busy bees
In the dewy flowers,
The dance of the fairies bold
In the dawn’s gay hours.
Or paint it for me in imagery true,
So my heart can feel it,
A picture the angels will covet
And earthward fly to steal it,
Someone, indeed, must capture
This vision for me
For it always occurs too early
For me to see!
— The Harp (aka Joseph B. Scannell 1927)