They Met in Milwaukee Waking Up to Diet and Exerc i s e 2 0 0 9

T
H
E
NETWORK
A Publication of
Narcolepsy Network, Inc.
Late Fall 2008
Mark Your Calendars!
2009
Narcolepsy Network
Annual Conference
Crowne Plaza Jacksonville
Riverf ront Hotel
1201 Riverplace Boulevard
Jacksonville, Florida 32207
General Info: (904) 398-8800
www.cpjacksonville.com
October 23-25, 2009
Welcome reception:
Friday evening, Oct. 23
Conference Sessions:
Saturday — Sunday, Oct. 24 — 25
Conference registration fee,
room rates, and reservation
information will be announced on
our website as available
They Met in Milwaukee
By Michele Profeta
Late for lunch, I was one of the last to enter the
Wyndham Hotel’s Grand Ballroom. As I crossed the
threshold, I became well aware of the noisy mix of
clattering plates and buzzing conversation. Ah, I
thought, the sound of the conference at work! For
many of the 230 attendees at the 2008 Narc o l e p s y
Network Annual Conference in Milwaukee,
Wisconsin, this was the reason for travel - the t a l k i n g.
On that first weekend in October, I flew 700 miles
Craig Salmond and Kara Twitchell
f rom Atlanta to Milwaukee because it was the only
place on earth that I could give my 15-year old daughter, Kailey, who was diagnosed
with narcolepsy at age 8, what she wanted more than anything. Kailey told me,
“I want to be there to feel normal, to be in a room with people just like me.”
Also seeking this vital connection, a young man, Craig Salmond, arrived at the
c o n f e rence from Utah. He had learned about the weekend event from a narc o l e p s y
s u p p o rt group on Facebook. Having never met another narcoleptic, Craig was interested in discovering “how others coped with work, school, and relationship issues.”
I asked him if he had found what he was looking for. He said, (continued on page 12)
In This Issue
Waking Up to Diet and Exercise
 They Met in Milwaukee
1
 Waking Up to Diet and Exercise
1
By Josette Keelor
 A Wo rd from our Executive Director 2
Mali Einen was diagnosed with classic narcolepsy when she was 22 years old
and has been using medication(s) to treat her symptoms for many years. She
recently began eating better, she says, when she chose to become more
involved in her health.
 Trading Places
3
 Same Game, New Position
3
 Research Briefs
4
Besides experiencing severely diminished energy levels after being diagnosed,
she was not interested in considering a lifestyle change at the time, she says.
Lately, however, she has been more adamant about watching what and when
she eats, and she says the plan works well for her.
 A Secret Santa Shares His Secret
6
“Because eating often will lead to sleepiness, I pretty much adapt my eating to
times when I can squeeze in a nap as well,” she says. Einen has found it useful
to plan exactly what she is going to eat and when it is best for her to eat it so
that she can function optimally in her career and ward off unwanted sleepiness.
Heather Smith was suffering with excessive sleepiness for seven years before
(continued on page 5)
 2008 Conference Photo Collage
10
 Ask the Sleep Specialist:
A re you still sleepy?
14
 A New Dawn for Americans
with Disabilities
15
 2009 Membership Form
17
1
A Word from Our
Executive Director
By Eveline Honig MD, MPH
Dear Friends of Narcolepsy Network,
NN has seen a whirlwind of activity
these past few months! We held a very
successful conference in Milwaukee,
Wisconsin with 230+ attendees. In
addition to greeting old friends, we
were happy to greet many newcomers.
One of the workshops that I always
run is a support session for family,
friends and spouses of people with
narcolepsy. I commended them on
how wonderful it was that they came
to show their support, learn more
about narcolepsy and be supported as
well. The importance of the last of
these is always emphasized when
emotions get very strong in the group.
Many people came for the bonding
experience too. Most important,
we discussed ways to improve
relationships.
For the first time in NN’s history, we
were represented at the American
Academy of Pediatricians (AAP)
meeting. We thank Dr. Mark
Patterson, one of our parent members
and a pediatrician and AAP member,
for getting narcolepsy on the agenda
with a presentation on School
Accommodations for a Student with
Narcolepsy and a poster exhibit titled
Narcolepsy as a Cause of School Problems
during Adolescence. Several pediatricians posed questions to Dr. Patterson
and me and all were eager to learn
about the value of the Epworth
Sleepiness Scale as a detection tool. In
order to make early diagnosis the
norm, pediatricians must include sleep
on their checklists during annual
physicals. Most pediatricians need a
better understanding of sleep
disorders and NN is committed to
furthering this goal to minimize lost
time and opportunities.
We have received a record number of
requests of late for interviews from
magazines, TV shows and online
2
publishers. One of our members was
interviewed for a broadcast on Radio
Netherlands, a station that broadcasts
all over the world. The program is
called The State We Are In. We hope to
have a recording on our website soon.
Another one of our young members
has just been interviewed for MORE
magazine. Vice-President Sharon
Smith was interviewed by Abc.com in
connection with an article on Japanese
researchers' discovery of additional
HLA markers associated with narcolepsy in Asian patients. All of this
has given us tremendous visibility.
of doubling or tripling the money used
for the event. I am amidst planning a
cocktail party in New York City for
the spring of 2009. A small group
of NYC members is helping me
organize this.
As you might have heard, the
documentary made by the British film
crew Firefly Productions has been
shown on TV in the UK. It was great
international exposure, with over 2
million viewers tuning in throughout
the UK alone. Nick Holt, the producer, told us that since the show aired
they have received many requests for
more information.
Lastly, I ask you to remember
Narcolepsy Network during the
holiday season. While all of us have
been challenged by rising food and
fuel prices, the demand for our services
is consistent and we want to continue
growing support systems, educating
the public and professionals, and
supporting research. I hope you will
find the generosity in your heart to
donate to NN at year-end.
We are planning for next year’s
activities already. We hope to make an
impact again during National Sleep
Awareness Week in March. If you
have or need ideas, please call us for
assistance. We are planning a series of
fundraisers in large cities throughout
the country. One of our members
donated “seed money” to conduct
fundraising events with the intention
I would like to welcome Tricia Higgins
as our new Board President. Tricia has
served as a Trustee of the Network for
two years and is very energetic and
outgoing. We also welcomed two new
board members: Michele Profeta of
Georgia and Ramon Werbeach of
Ohio. Ramon was appointed to the
Board after elections.
Wishing you all a wonderful, peaceful
holiday season and a happy, healthy
New Year!
Warm regards,
Dr. Eveline Honig
Dr. Eveline Honig and Dr. Mark Patterson in front of their poster presentation at the American
Academy of Pediatrics (AAP) meeting in Boston, MA this past October.
Trading Places By Sharon D. Smith, NN Vice President
I could fill this
page with words
describing the
experience of
serving as
President of
NN’s Board for
the past five years
and fully 99% of
them would be positive. I was deeply
honored to be elected to this position
just 5 months after being appointed to
fill a vacancy. The solid business background I gained during my work years
as a CPA prepared me well for the
many challenges that NN has faced
during my tenure. Still, I wondered
and worried at first whether the narcolepsy that had forced me to leave a
career I loved would be a serious
impediment in fulfilling this role.
In many respects the role of President
is what you make it. I was raised with
the expectation that I would “do my
best.” It seems to be a common personality trait among PWN to equate
our personal best with perfection. This
mindset drives us to be high achievers.
For me, this drive, combined with the
passion I developed for the narcolepsy
cause years earlier, the flexibility to
nap when needed and the solid
support of fellow Trustees, saw
me through.
NN bylaws limit Trustees to 2 consecutive terms of 3 years each. A Trustee
is eligible to run again for another
term after one year off the Board. Our
Board has discussed removing this
restriction but no one is more opposed
to this than me. Common business
sense dictates several principles be
followed: 1) in a healthy organization,
no one individual should become
indispensable and 2) allowing for a
fresh approach, a shift in certain
priorities and the addition of complimentary skills and strengths is change
for the better!
It is with every good intention and
expectation for continued growth
and progress that I welcome and
congratulate Tricia Higgins as NN’s
newly elected President. Tricia has
everything it takes to lead our organization into the future and it will be an
honor to support her in this role as her
Vice President during the coming year.
With the additional free time I will
have as my role transitions to Vice
President, I hope to enjoy catching up
on my neglected personal life, but I
won’t be off the NN scene until my
term ends next year. After I have had
my year off (2009-10), I look forward
to the possibility of a future term on
NN’s Board.
Same Game, New Position By Tricia Higgins, NN President
It’s game time!
The zamboni has
just left a clean
new sheet of ice;
I have now been
moved up to the
first line. The
Ref is about to
drop the puck
and it is “Game On!” I am now ready
to skate in my very first big game.
Thank goodness I have had the best
coach in the league, a true Hall of
Famer, Sharon Smith. I also know that
our team has several strong lines, a
solid defense and excellent goal keeping. I am surrounded by a winning
team with a huge fan base.
At the annual Board of Trustees meeting, it was unanimously decided by the
Board members to elect me as
President with Sharon Smith serving
as my well qualified and supportive
Vice-President. I accepted the position
of President, and thankfully, Sharon
agreed to accept the position of Vice
President. This “swap” of positions is
in many ways a transition strategy so
that Sharon’s currently vital role on
the Board can gradually diminish
through the end of 2009 when she will
take some time off from the Board.
I have surrounded myself with exceptional NN members and Board members. The current Board is made up of
highly talented and motivated people.
It is their expertise and support that
motivates me. I believe in honesty,
integrity, a solid work ethic and a positive attitude. I also value and appreciate a good sense of humor. I am a
hockey mom who happens to wear lipstick. I grew up the eighth child in a
family of fifteen, and that experience
has helped prepare me for this position
and leading this organization as its
President.
It is vitally important to me that an
open and constant dialog with our
executive director, Dr. Eveline Honig,
and the staff, be maintained. I com-
mend their dedication and commitment to the goals of this organization.
Their skills and talents are remarkable.
We are extremely fortunate to have
these people play key roles in our
organization. I consider it an honor to
work with them on a daily basis.
Without their immeasurable contributions I would not be able to lead this
organization for the next year, and
with your support, further into the
future. With that said, I want to share
with you some of my thoughts and
goals for the next year:
• Today’s youth is the future of this
organization. We must meet your
needs.
• Narcolepsy is what we have.
Narcolepsy is not who we are. It
does not define us.
• Gainful, fulfilling employment is a
reasonable goal and attainable in
most cases.
(continued on page 5)
3
Research Briefs
Circadian Rhythm in
Salivary Melatonin in
Narcolepsy Patients
A Look at Features of
Cataplexy in Childhood
Narcolepsy
Researchers led by Dr. Sona
Nevsimalova in Prague, Czech
Republic examined how pineal
hormone melatonin levels may have
an affect on people with narcolepsy’s
sleep characteristics. In addition to
other features, narcolepsy is characterized by excessive sleepiness and disturbed sleep at night. The aim of the
study was to compare the circadian
rhythm in salivary melatonin in
narcolepsy patients as compared to
healthy control subjects. Eighteen
narcolepsy subjects and twenty-one
age and gender matched control
subjects were evaluated.
A group of physicians from the
University of Bologna, Italy headed by
Dr. Guiseppe Plazzi took a close look
at features of cataplexy in a pediatric
population with narcolepsy. Cataplexy,
the hallmark of narcolepsy, has been
well characterized in adults but not in
c h i l d ren. In the study, researchers
reviewed clinical assessments and video
recordings (re p resenting 49 episodes
in eight cases) to evaluate cataplexy in
23 patients diagnosed before the age
of 18 years of age.
The pineal gland, located deep in the
center of the brain, synthesizes and
secretes melatonin, which is believed
to coordinate biological clock signals
and sleep cycles. Normally, serum
levels of melatonin are found to be
quite low during the day and increase
dramatically to a peak during darkness. Melatonin has also been shown
to decrease motor activity, induce
fatigue and lower body temperatures.
Research results revealed that
narcolepsy patients did exhibit a
nocturnal increase in salivary
melatonin similar to controls.
However, the typical morning decline
of melatonin in controls was not
found to be significant in the
narcolepsy group. Eight of the 18
narcolepsy subjects also exhibited
elevated levels of melatonin during the
day. In these eight patients, the mean
sleep latency on the daytime napping
test (Multiple Sleep Latency Test) was
decreased or quite a bit shorter than
those narcolepsy patients whose
melatonin was undetectable during
the day. The researchers concluded
that the results suggest that in some
patients with narcolepsy the circadian
rhythm might be disturbed.
4
By Mali Einen
Forty-three percent of the patients had
falls as part of their cataplexy attacks.
During cataplexy knees, head and jaw
w e re the most frequently compromised; with eyelids, arms and tru n k
being less commonly involved. Even
less commonly reported were blurre d
vision, slurred speech, irregular breathing or a sudden loss of smiling. Onet h i rd of the subjects presented with a
p reviously unreported description of
cataplexy that they called “cataplexy
face,” consisting of a state of semi-permanent eyelid and jaw weakness on
which partial or complete cataplectic
attacks were superimposed.
Researchers at Stanford Center for
N a rcolepsy added that it was not
unusual to see tongue thrusting in
response to typical cataplexy triggering
emotions in children. This tongue
thrusting appears to be in part the
“fighting” off of a partial cataplexy
attack and although witnessed in a
small number of adult cases, is more
commonly reported in children.
The usual triggering emotions such as
laughter, joking or anger were either
not always present or not always
evident to adults, hampering diagnosis.
The video-recordings of cataplectic
attacks are helpful in documenting
cataplexy, providing comparisons to
other archived presentations and
in aiding diagnosis.
Hypocretin Receptor
Expression in Dog and
Rodent Models of
Narcolepsy and in
Hypocretin Deficient
Human Narcolepsy
The purpose of studies conducted by
Dr. Seiji Nishino and his colleagues at
Stanford Center for Narcoelepsy was to
assess whether long term hypocretin ligand loss (the loss of the cells that produce hypocretin — also called orexin —
which have been demonstrated to cause
classic narcolepsy-cataplexy) compromises the ability for the hypocretin
receptor genes (hcrt1 and hcrt2) to
be expressed.
Results, interestingly, found that the
expression of hcrt1 was significantly
decreased in the rodents, sporadic
canine model and in human narcolepsy-cataplexy patients with hypocretin
deficiency, while declines in hcrt2
expression were not significant. Hcrt2
mutated Doberman ( with normal
hypocretin ligand production) showed
no alteration in hcrt1 expression.
The moderate declines in hypocretin
receptor expressions are possibly due
to long term postnatal loss of hypocretin ligand production and the declines
are not likely to be progressive or
complete. The relative preservation
of hcrt2 expression suggests that
possible future hypocretin-based
therapies are likely to be viable
therapeutic options to successfully
treat human narcolepsy-cataplexy.
Elevated Peripheral
Visfatin Levels in
Narcoleptic Patients
With the 1980’s discovery of the
strong association of HLA
DQB1*0602 in people with narcolepsy-cataplexy (over 90%), it has been
presumed but without real evidence to
prove, that narcolepsy is an autoim(continued on page 5)
Waking Up to Diet and Exercise (continued from page 1)
she was finally diagnosed with narc o l e psy 1992. While she had been seeing
d i ff e rent doctors about some of her
narcolepsy symptoms, it wasn’t until
her senior year of high school when
she found a doctor who recognized
them and could diagnose her.
Her sleep was very fragmented, she
says, which made it difficult for her to
get good quality sleep at night. She has
been treating the symptoms of excessive
daytime sleepiness, sleep paralysis,
and hypnagogic hallucinations with
medication, but she just recently added
e x e rcise to her routine.
“I wanted to do something drastic, and I
signed up for a boot camp class,” she
says. In March, she signed up for a 7
a.m. class, which met five days a week.
The hour-long class fit with her schedule at the time, because she did not have
to be at work until 11 a.m., but it was
still tough forcing herself to get out of
bed each morning.
“It was the hardest thing I’ve ever done,
but it made me feel so great,” she says.
Nutrition and exercise have been on the
lips of re s e a rchers and professionals in
the general medical community due to
the national obesity epidemic, though
neither is a common topic for patients
with narcolepsy to learn more about
when they visit their sleep physicians.
R e s e a rch could help determine how
e x e rcise influences narcolepsy symptoms, but few, if any, studies exist.
Despite the lack of research, many
people with the disorder have been able
to stabilize symptoms though lifestyle
changes, even going as far as to reduce
the amount of medication they use.
One reason research in this area has
been limited is because until the year
2000 scientists understood very little
about the neurological disorder that
they now think might be autoimmune.
A treatment does not currently exist for
the causes of narcolepsy, and what
(continued on page 8)
Same Game, New Position (continued from page 3)
• I need your talents. I need your
commitment. I need your
dedication. I need you.
• I believe that depression is the
most serious symptom to affect the
outcome of how a person with
narcolepsy functions. However, I
firmly believe that there are readily
available medical solutions and
support services to help deal with
depression, and how depression
may play a role in dealing with
narcolepsy symptoms.
• The world has opened up for those
seeking online support. Live chat
rooms, no matter day or night,
and/or online forums have become
viable and forthright support
systems in their own right.
• If I know anything for a fact it is
that this group of people really
wants to be helpful and to give
back. The online community is set
up just for that. We need you to
donate; and we need you to ask for
donations on our behalf. Those
that don’t ask, don’t receive.
• I want to make us an online
community that uses the message
board to post topics, problems, and
solutions. It is the quickest, most
efficient, least expensive way to
communicate with the membership. With that in mind I welcome
your thoughts, well-wishes, and/or
concerns. Bring it on! My level of
expectation is quite ambitious, and
my competitive spirit energizes me.
Help me move this organization in
the right direction.
Thank you for this courageous
opportunity. I respect the
responsibility and hold it in awe.
Game on, drop the puck!
Elevated Peripheral Visfatin Levels in Narcoleptic Patients (continued from page 4)
mune mediated disorder. More recent
discoveries demonstrate that the major
pathophysiology or cause of narcolepsy
is due to the loss of hypocretin- (orexin-) producing neurons due to
immunologically mediated degeneration. Visfatin is a recently described
proinflammatory adipokine.
Adipokines are hormones that signal
changes in fatty-tissue mass and energy
status to control fuel usage. Visfatin is
identical to the immune modulating
pre-B-cell colony enhancing factor
(PBEF).
Researchers in Mainz Germany examined the hypothesis that visfatin levels
are altered in narcolepsy patients. For
their study, 54 patients (18 male, 36
females) diagnosed with narcolepsy
according to the DSM-IV were examined. A control group of 39 unrelated
(12 male, 27 female) healthy volunteers
without sleep disorders were included.
Peripheral visfatin levels were measured using a commercial kit. The
study found that circulating visfatin
was significantly increased in HLA
DQB1 positive narcoleptic patients
compared to controls. These results
add to the evidence of disturbed
immunological regulation in patients
with narcolepsy.
5
A Secret Santa Shares His Secret
Contributed by Kathleen Randell on behalf of Secret Santa ‘Jude’ and Bridget Swartz
On Christmas Eve
2007 Bridget Swartz,
a NN member and
San Diego conference attendee,
received a very special
gift from her Secret
Santa. The unusual gift was in
the form of a powerpoint presentation explaining how her
Secret Santa and 50 of her family and friends came together to
make a donation to the
Narcolepsy Network on her
behalf. Not only is this a touching Christmas story, but it is
also a wonderful example of
how one Secret Santa can
make a difference in the lives of
people with narcolepsy. This is
also the type of networking that
other NN members can do with
their own family and friends to
further the causes of the
Network. And while
Christmastime is a great time
for this type of effort, secret or
otherwise, a holiday is not
necessary to join friends and
family together in a common
mission to aid those struggling
with a lifelong condition such
as narcolepsy.
I hope that you are as moved
by Bridget’s and Jude’s Secret
Santa story as I was. I immediately knew this was the type of
inspirational story to share with
others, and thankfully Bridget
and Jude agreed.
So thanks Santa, err, I mean
Jude! And sorry Jude,
your secret is not so secret
anymore. Thank you from
all of us here at NN!
-Kathleen Randell, Accounting
6
How did Jude come up with his unique
Secret Santa gift for Bridget? She actually started it herself with an email to
family and friends after Thanksgiving.
Enjoy the correspondences below as
Jude tells the story in his own words.
On Thanksgiving, we picked names for
our Secret Santa, and I picked Bridget.
A few days later, she wrote the
following email:
Hey everyone,
As most of you know I suffer from a disorder called Narcolepsy. George and I attended the Annual Narcolepsy Conference this
year in San Diego to learn more about the
future research of Narcolepsy and to simply
educate ourselves. It is a Research and
I n f o rmational Network to inform and help
future Narcolepsy Research. I received the
email below and thought I would pass it
along as you may also pass it to others.
I know I use “Google” religiously for my
online searches and now know that if I use
GoodSearch instead, it donates 50-percent of
its revenue to the charity of your choice. If
you register at www. g o o d s e a rch.com and
choose "Narcolepsy Network" as your charity and install the Goodsearch browser, each
time you search the Internet using
Goodsearch, the Narcolepsy Network
receives a donation!
I would really appreciate it if you could all
t ry to use this search engine even once
instead of the one you currently use, as it
will help towards the potential cure of
Narcolepsy.
Thanks everyone,
Bridget
Georgie then forw a rded Bridget’s letter
to everybody in his address book,
including me.
I hit ‘Reply All’ and wrote the
following letter:
Everybody,
I am breaking my cardinal Secret Santa
rule. I am telling my secret.
At Thanksgiving dinner, we picked for our
Secret Santa grab bag. I picked Bridget and
after hearing Georgie talk about how great
the trip was to San Diego and how much
they learned, I instantly wanted my gift to
center on Brig’s narcolepsy.
Brig deals with this affliction every day and
I know there are some little things I take
for granted that she cannot. I want to do
something about that.
I contacted the Narcolepsy Network and
have an idea.
I told Narcolepsy Network that I wanted to
do a donation in Bridget's name. They said
I could send in a check and they would send
a thank you note with a receipt for a tax
deduction.
I contacted the IRS and not only is NN on
their list of approved charities for tax
deductions but it is the only narcolepsy charity on it. NN will also send something to
Brig.
The limit on this year’s grab bag is $25.00.
I want to give it to NN and help them use
it towards the fight and I want to ask you
guys if you can help me help them and
match my $25.
I asked NN if I get others to help if I should
collect it and send one big check in but NN
said if anyone wants to match in Bridget’s
honor, each check writer will get a thank
you/tax receipt.
I do not have all of Brig's friends/family’s
email, if any of you can pass this on, I
would be grateful. If you could be discreet so
this stays a ‘secret’, I would be appreciative.
And if you can help and want to match me,
I would be greatly humbled and honored.
Please make checks out to Narcolepsy
Network.
Please put Bridget Swartz in the 'memo'.
I will get them to NN on behalf of Bridget
and will present her with a card at
Christmas with all of your names and the
total amount.
If you can help, then you could either give
the check to Georgie or me or mail it to me
or call me and I will come to you and pick it
up. My address/numbers are:
(withheld)
Thanks for your time and help
Merry Christmas,
Jude.
And then something happened in
response to the second email. Some forw a rded the email and some printed it
and brought it to work. And then more
envelopes began to fill my mailbox from
places such as Steger, Joliet, Manteno,
Homer Glen, Palatine, and Chesterton
for a total of 50 of Bridget’s friends and
family members who contributed to this
special gift.
We are sending
a package to
Narcolepsy
Network in
the amount of
$1,015.
And of course me, Jude,
your Secret Santa.
Two days later, envelopes from all over
Oak Forest began to fill my mailbox.
They also came from family and friends
in Tinley Park, Burbank, and Palos
Heights. Then at the cookie exchange,
some said that they might not be able
to give what they wanted but what they
could afford, so I sent a second email.
E v e ryone,
It has been one week- with two to go until
Christmas and I can’t tell you how good this
is going and how nervously excited I am.
However, after sending the email, Stacy
and I were talking about how tight our
budget was and that if something like this
came up for someone/something else ... and
we were asked to donate...it would be very
difficult to do.
We are budgeted down to the last dollar.
I should have said this in the original email.
Give what you can/if you can. Cause I
think Bridget will love this gesture but
would be overwhelmed by the mountain of
NAMES that donated on her behalf not a
mountain of money.
I think it would mean more to her if 25 of
her friends and family gave one dollar as
opposed to one person giving 25. I tru l y
believe that. And like I said in the original
email, I am going to list the names and the
total amount not an itemized list of names
and numbers. Please, please, please do not
think if you cannot match the $25 that you
cannot be a part of this.
Merry Christmas,
Jude
Editor’s Comment: Thank you to all of Bridget's family and friends for making
this special gift possible, especially Jude for playing the role of Santa so well
last Christmas. NN appreciates your thoughtfulness and generosity towards our
mission to support people with narcolepsy, educate the public, and continue
re s e a rch. We hope that everyone reading this will share in the joy of giving that
Santa represents.
We also hope that you remember the Network in your giving all year long.
This story can be altered and used again for other celebrations like birthdays,
Hannukah, or Kwanza. You can give by volunteering your time and/or making a
contribution to our funds. We have many opportunities for involvement in the
Network, from sharing stories via this newsletter or our website, to preparing
for each year’s annual conference, to being involved in Sleep Awareness Week
in March every year. There is always a way that your involvement in our
community can make a difference. If you are interested in learning more
about how you can get involved, please email Sara Kowalczyk at
[email protected].
7
Waking Up to Diet and Exercise (continued from page 5)
exactly causes the onset of the disord e r,
as well, remains relatively unknown.
One problem that researchers face in
finding a cure or even a treatment is
that the symptoms of narcolepsy can
v a ry from person to person.
“Not everybody who’s diagnosed with
narcolepsy has classic narc o l e p s y,” says
Einen, Clinical Research Coordinator
at the Center for Narcolepsy at
S t a n f o rd University in California.
She says that those who experience
classic narcolepsy will show all of the
symptoms of narcolepsy at one point
or another.
“Classic narcolepsy does include
cataplexy,” she says. All of the other
symptoms of narcolepsy—sleep attacks,
sleep paralysis, hypnagogic hallucinations, and excessive daytime sleepiness—can be caused by narc o l e p s y
without cataplexy or other conditions
or maladies, she says.
People with sleep apnea, for example,
experience many of the symptoms of
narcolepsy, but because of a diff e re n t
reason, she says. Those with sleep
apnea have disrupted nighttime sleep,
so they can very often experience
daytime sleepiness. They do not,
however, experience cataplexy.
Another aspect of narcolepsy that continues to plague researchers is that people diagnosed with narcolepsy all share
a similar chemical imbalance in their
brains. “Narcoleptics’ sleep is
d i s o rganized because they are missing
h y p o c retin”, Einen says. A chemical
the brain produces to enable the body
to sleep, hypocretin is found only in
trace amounts in those who suffer fro m
narcolepsy. Researchers believe that
this is the key to why narcoleptics
experience the symptoms that they do,
but, so far, a cure has not been found.
The only approved method of
treatment is medication, though
doctors and re s e a rchers agree that
this treats only the symptoms of
narcolepsy, not the cause.
Moreover, a diagnosis of narcolepsy
can bring with it further diagnoses of
8
other medical conditions. “Recent
research has shown that people with
n a rcolepsy have a high risk of
developing type 2 diabetes”, Einen
says. It remains unknown whether
this is due to the lack of hypocre t i n
which may interact with glucose
utilization or if it is due to more
typical causes of type 2 diabetes
found in the general population.
“One of the things we’ve seen here is
that a lot of people do gain weight
when they develop narc o l e p s y,” she
says. With weight gain, you’re more
likely to develop other problems, she
says, like sleep apnea or diabetes.
Besides the tendency for lower energ y
levels in people with narc o l e p s y, a
slower metabolism plays a large part in
weight gain.
“Metabolism seems to be affected in
people who have hypocretin deficiency,” she says. These people also tend to
have lower blood pre s s u re, and even
though they eat less than do people who
have normal levels of hypocretin, they
still average a higher body mass index.
“Their metabolism truly is slower,”
Einen says. Though restrictive dieting
alone might not help those with narcolepsy, exercise could legitimately be
p a rt of a solution, she says. Exerc i s e
does increase one’s metabolism.
“I would look at treating the brain as a
whole, and the body too, because you
need to take nutrition into the body,”
says herbalist Deanna Cowgill, of
Winchester, Va. For those who are
i n t e rested in introducing vitamins and
herbal supplements into their nutritional routine, she recommends calcium and magnesium for more energ y,
CoQ10 to increase circulation to the
brain, amino acids — building blocks
of brain chemicals, and NADH to
c reate and transfer energ y, mainly in
the brain. Omega 3 fatty acids are also
helpful to the body, she says. “They
p rotect the cell membranes and they
act as neurotransmitters,” she says. Also
helpful are vitamin C, which she says
will increase energy in the cells, and
vitamin E, which increases circulation.
Ginseng is a supplement that helps to
normalize processes in the body, such
as those that lead to diabetes, she says.
Cowgill also believes that eating smaller meals could help because if the
stomach is full, that also promotes
sleep, something that Einen noticed
about herself in recent years.
“I stay a little bit food deprived,” Einen
says, though she has to be cautious
about not skipping meals. Eating small
quantities of food numerous times a
day helps her remain awake and alert
when she needs to be because she
never eats until she is completely full.
“I have found that staying away fro m
eating food … helps me to stay awake,”
she says, and she does not become as
sleepy during the day. If she puts off
eating for too long, though, it aff e c t s
the way she feels. She discovered that if
she eats carbohydrates, she would be
too tired afterward to get anything
done, often falling asleep while working.
Listening to what her body was telling
her became a priority, and she soon
eliminated carbs from her morning
diet. Because she knows they make her
t i red, she pushes them off until later in
the day, about 30 minutes before she
plans to take a nap. In the morn i n g ,
she eats protein-rich foods, such as
y o g u rt, which helps energize her
through the workday.
Since beginning this nutritional
lifestyle change, she says that she feels
better than she did when she was try i n g
to ward off eating in order to stay
awake longer.
“I would be better off eating small
amounts to keep my metabolism
stoked [as opposed to eating nothing],”
she says.
Smith, a board member for the
Narcolepsy Network, who lives in
Seattle, WA, also began changing her
eating habits, both to become healthier
and to help control her symptoms of
narcolepsy. She cut out soda and foods
made with white flour, such as white
(continued on page 9)
Waking Up to Diet and Exercise (continued from page 8)
bread and pasta. She began following a
diet program from the book You on a
Diet, by Mehmet C. Oz and Michael F.
Roizen; she and her trainer also made a
list of foods that make her feel sleepy,
so they could begin eliminating those
as well.
Cowgill agrees that listening to one’s
body is important. In addition to
understanding how food groups will
affect everyone (that high carbs promote sleepiness, and protein promotes
alertness) it is also important for those
with narcolepsy to find out if they have
any food allergies that could be influencing their symptoms. Cowgill
believes that an undesirable reaction
that the body has to food could be tied
into brain function.
After figuring out how to use food to
her benefit, Einen also began scheduling exercise into her day. It was as if
she had to be doing well nutritionally
b e f o re she felt well enough to incorporate exercise into her healthy lifestyle,
she says.
“I have found it helps, it works,” she
says of exercising, though she still has
to motivate herself to do it each day.
“I treated it like an appointment,” she
says. “For me, I have to do it in the
morning. If I don’t do it in the
morning, forget it.
“It takes doing it to enjoy it,” she says,
adding that she thinks people with narcolepsy can benefit from exercise.
When Smith signed up for the morning boot camp class, she was unsure of
what would happen. In fact, it was not
even in an attempt to ease her symptoms of narcolepsy that she decided to
begin exercising.
“I needed the exercise, I wanted to lose
weight,” she says. “I thought, actually,
it would make me sleepier.” By the end
of the second week, however, she began
to notice that she was sleeping better.
Smith still takes Tamazepam to help
her sleep and Ritalin, which helps to
ease her daytime sleepiness, but she
says that she does not have to take as
much to help her sleep. Exercising has
also become a big part of her routine.
“Oh, it has helped immensely,” she says
of beginning her exercise routine.
Smith says that she still wakes up
throughout the night, but not nearly as
much as she used to. Her sleep doctor
told her she could reduce the amount
of Ritalin she takes, from 20 milligrams
three times a day to 20 milligrams
twice a day, since she can take a nap
b e f o re work to ward off sleep for
another eight or nine hours. She says
that once she began exercising, her
need for medication declined because
she had more energ y.
“It also helps with stress,” she says.
Five months after deciding to begin
working out, Smith still keeps up with
e x e rcising five days a week. She has
moved on from the boot camp class
and is now beginning to swim thre e
days a week and work out in the gym
another two days. She says that any
movement should work for those with
narcolepsy, especially those new to
e x e rcising (some people with excessive
cataplexy may want to check with their
sleep physician before embarking on a
swim program, especially if they have
never swam before ) .
“It could just be a walk—just to get out
and move,” she says.
“I think doing too much too fast is
h a rd on any body,” Einen says, explaining that when she began exercising she
felt more tired than usual, so she took
it slow. “I think you will be more tire d
[if you start too quickly],” she says.
Einen still takes Xyrem to help contain
her cataplexy and improve daytime
functioning.
“It was something that anytime I found
something funny, my head would
drop,” she says about her cataplexy
attacks before Xyrem. She was unable
to attend her daughter’s sport i n g
events, she says, because if she became
excited about her daughter’s successes,
they would elicit a cataplexy attack and
she would hit the floor. “For me, the
X y rem gave me my life back,” she says.
Though they continue taking medication(s), Smith and Einen each use
nutrition and exercise as complementary treatments or behavioral therapies.
What makes people feel better in general can truly help a person with narcolepsy, Einen says.
“I would definitely talk to your sleep
doctor,” Smith says. “We as narc o l e ptics need movement. … Our condition
renders us sort of immobile at times.
We need to exercise just as a natural
way to make ourselves feel better.”
9
2008
Narcolepsy Network Annual Conference
Thank you Marcia D. Coy, Charlie Severson, Chelsey Schneider, and Linda Custer for sharing your photos
of the conference with us.
10
11
The Annual NN Conference Wrap-Up (continued from page 1)
“The answer is a definite yes; that, and
a lot more. Now, for the first time in
ten long years, I really feel okay having
narcolepsy, knowing that I am as normal as the next narcoleptic guy.”
Kailey had a similar feeling at her first
c o n f e rence. Now, having attended her
fifth, she says, “Narcolepsy is such an
abstract illness. It’s not just the sleepiness—it’s all the other things that go
along with it that make it so hard, that
people don’t understand.” At the conf e rence everyone understands. There is
a lot of listening going on.
That is why Pam Doiron traveled fro m
rural Maine to Milwaukee, “to hear
f rom the people living with narcolepsy
hear doctors on the “front-lines of
narcolepsy research” speak about
their discoveries.
News from the front line was invigorating this year. A cornucopia of scientific
data was presented by leading
researchers and clinicians beginning
S a t u rday morning. Dr. Eve Rogers
spoke about a basic understanding of
narcolepsy, and Dr. Suresh Kotagal lectured on the topic of diagnosis. A careDr. Eve Rogers
ful explanation of re s e a rch on weight
and Xyrem was given by Dr. Ruzica
but were actually markers for genetic
Ristanovic, who also shared her knowldiseases. The display of his complex
edge of rebound cataplexy. In addition,
work was a re w a rd for this audience.
Dr. Meeta Goswami expounded on the
Mignot’s many years of excellent work
causes and management of pro c r a s t i n anow provide a gre a t e r
“Narcolepsy is such an abstract illness. It’s not just the sleepiness —
it’s all the other things that go along with it that make it so hard,
that people don’t understand.”
and to talk to other parents of childre n
with narc o l e p s y.” Their family had
never met another person with narcolepsy before they attended the 2005
NN conference in Boston. Pam is passionate about learning everything she
can about narcolepsy because it has
complicated her 15-year old son
Christian’s life for the past ten years.
“The conference with 200-300 in
attendance is an excellent opport u n i t y
to be educated, renewed, and supported, and is an experience I wouldn’t
miss,” said Pam. She also wanted to
Dr. Emmanuel Mignot
12
tion. She is the
recipient of the
NN 2008 Lifetime
Achievement
Aw a rd for her
outstanding
commitment to
i m p roving the
quality of life of
people with
narcolepsy and
their families.
Dr. Meeta Goswami
Narcolepsy and
aging was aptly covered by Dr. Lois
Krahn. Additionally, Dr. Rubin
Naiman lectured on alternative and
complementary medicine.
Sunday afternoon brought Dr.
Emmanuel Mignot from the Stanford
Center for Narcolepsy. In his keynote
a d d ress, Dr. Mignot revealed that he is
on the verge of accomplishing one of
his life’s goals: proving that narcolepsy
is an autoimmune disease. Eager eyes
watched his presentation of slides
showing grids of multicolored dots that
looked like an intricate electronic game
understanding of their
illness to the scientific
community. In the small
g roup question and answer
session following his main
l e c t u re, Dr. Mignot said he
would turn to treatments
next. Here was hope to take
back home.
The weekend’s medical core was
i n t e rwoven with support group
breakout sessions covering many
personal topics relating to narcolepsy
such as family dynamics, pregnancy,
elder issues, understanding sleep
studies, and advocacy. Conference
c o o rdinator Audrey Kindred elegantly
mixed science and soul. Even so, a lot
of the conference “m a g i c” happens in
the hallways between sessions as old
and new friends share the inform a t i o n
they are gathering and compare notes
on life with narc o l e p s y. There I met
Bobbie Thomas, a 69-year old woman
with narc o l e p s y, who had driven alone
f rom Iowa to Milwaukee while still
recuperating from a broken leg.
Courage and determination! I was
glad my young daughter could
come to the conference and meet
inspirational people like Bobbie.
Now, in the pattern of my life,
October means conference time.
Talking. Listening. Sharing. Caring.
Hope to meet you next October
in Jacksonville!
Policy Leadership Award, 2008
Senator Timothy Johnson, South Dakota
Activism Award, 2008
Bailey Carlsen
Activism Award, 2008
Linda Custer
Community Awareness Award, 2008
Loyola Academy Girls' Swim Team 2007/08
S h a ron Smith and Linda Custer
Talking
Listening
Thank you Bridget!!
NN wants to thank
Bridget Swartz for donating
original artwork to the
2008 Annual Conference
which sold for $112 through
silent auction.
Bridget very kindly
donated the entire proceeds
to the Narcolepsy Network.
Public Awareness Award, 2008
Megan Herickhoff
(Miss Teen Minnesota International 2008)
Ruth Justice Nebus
"Volunteer-of-the-year" Award, 2008
Veronica Casale
Lifetime Achievement Award, 2008
Dr. Meeta Goswami
Sharing
Caring
Check out the Narcolepsy Network
on MySpace
http://www.myspace.com/narcolepsynetwork
This is a great site where young members can
connect with one another, and we want to see
you blogging here soon!
13
Ask the Sleep Specialist: Why are you still sleepy?
By Joyce Walsleben, RN, PhD
Suppose you are diagnosed with narcolepsy, given a prescription of medication, taking it faithfully and still
find yourself feeling sleepy. Or even
more important, your family and
friends are reporting that you are not
as alert or awake as usual.
First, you need to believe your sense
of yourself and friends’ reports. It is
important to understand that people
who are sleepy over long periods of
time generally think any improvement
in wakefulness is good when they
are first medicated. But, initially
prescribed doses may not be good
enough, and you may need more of
one medication or a combination of
two medications in order to optimize
alertness. It is difficult to judge your
own wakefulness improvement from
medication because ‘better’ is a qualified or subjective term. I generally
suggest patients try to optimize their
medication use by pushing a little
higher on the dose than they may like
for a time. Then they will know what
‘awake’ feels like (at the extreme end)
and be able to back down the dosage
down to the desired level.
Second, you should assess your
lifestyle if you find yourself with
unwanted sleepiness. There are many
questions it would be useful to ask
yourself. Are you getting the same
amount of sleep and is that amount
enough? For instance, did school or
work just start and you are trying to
burn the candle at both ends, and/or
just not sleeping enough? If you are
not getting enough sleep on a regular
basis you may develop a ‘sleep debt’
and experience additional fatigue
and/or sleepiness. Increasing sleep
may repay this sleep debt and once
you are rested, you should be feeling
like yourself again very quickly.
Adding a few minutes to your sleep
each night is often helpful. Why?
Because if you add just 15 minutes of
sleep every night this week, over seven
nights you will add almost two hours
14
of sleep, and it could make a significant
difference to how you feel during the
day. You probably could add 15 minutes more the next week too. When
you are sleeping enough, you are better organized and able to perform better, and that may result in more time
to yourself in the evening, as opposed
to doing necessary tasks such as homework, studying, or housework during
that time.
Third, you may also want to consider
how much light and exercise you are
getting. Light acts to alert us, as does
exercise. If you are inside most of the
day, you may be missing the normal
‘brightening’ of the sun and become
depressed, fatigued, and/or less physically active. Exercise can also stimulate
you. If you are just sitting around, you
may find that you have more energy
after you force yourself up and out to
exercise even if it is just a brisk 10minute walk!
Finally, if you find yourself unusually
sleepy, your physician can assess the
dose of your medication(s) as well as
check for other causes of sleepiness.
What might those be? You may have
an infection, anemia, depression,
and/or an underactive thyroid condition. You may even have another sleep
disorder! So please remember to discuss any problems or issues you have
with unwanted daytime sleepiness with
your doctor.
Unfortunately, many physicians don’t
ever ask their patients about sleep. So
here are some questions and ideas you
can use to prepare for your next visit to
see your primary care physician or
sleep specialist:
1. Is your sleep quality okay? For
instance, are you waking up too
much or feeling unrefreshed in
the morning?
2. Are you in pain?
3. Is someone reporting that you are
restless in bed, kicking your legs
or snoring?
4. Do you ever fall out of bed while
dreaming?
5. Do you ever yell in your sleep?
6. Has the dentist commented that you
might be grinding your teeth?
In addition to these more general
questions, you may also be experiencing symptoms from related sleeping
disorders. Therefore, I put together
additional comments on the more
common sleep pathologies that may
co-exist with narcolepsy.
Insomnia
Regarding waking at night, are you
aware that everyone wakes up every 90
minutes or so after our dream cycle? If
you have a habit of watching the clock
to mark the awakenings and then
going to the bathroom or otherwise
staying awake, throw out the clock!
Really, get rid of it or cover it over and
do not look! That way you will simply
not notice normal awakenings and they
will be shorter. You will probably find
you do not have to use the bathroom
as much either. If you are having hot
flashes or prostate issues, taking care of
them the best way you can would be
helpful. That means you may need
medication or some procedure to
accommodate the cause of your need
to awaken.
Pain
Think about the pain issue. Even
though you are not aware of ‘pain’, it
may be helpful to try something like
Advil or Tylenol at bedtime if you are
able to tolerate these over-the-counter
medications. I have found one long
acting arthritis Tylenol or two Advil
pills very helpful to control those little
‘background’ discomforts we all think
we adapt to.
Periodic leg movements:
Is someone reporting that you are restless in bed, kicking your legs or snoring? If so, consider your sleep
specialist again. Many people with
Ask the Sleep Specialist: Why are you still sleepy? (continued from page 14)
narcolepsy also have other sleep disorders such as periodic limb movements
or sleep apnea which interfere with
sleep. Correcting all of these sleep
issues is essential.
Periodic leg movements can be related
to low iron (ferritin) or caused by
other medications you may be taking
such as a class of drug called SSRI.
These include drugs like Paxil and
even Effexor. Depending on the cause,
treatment generally includes adding or
altering medications.
Sleep Apnea
Symptoms of sleep apnea can mimic
those of narcolepsy. In sleep apnea,
your airway closes for brief seconds at
a time when you are sleeping, but you
are unaware. Your brain briefly wakes
you, causing more muscle tone in your
airway. This allows you to start breathing well again, frequently after a snort,
gasp or snore. Then you fall back to
sleep and the cycle starts again.
Because this can happen hundreds of
times across the night, you never get a
good night’s sleep and may be profoundly sleepy the following day, even
having REM onsets on an MSLT!
Please be aware that while sleep apnea
is more common in men, it certainly
can occur in children and women, particularly in those who are overweight.
Strangely, women are seldom aware
they snore so don’t be fooled. We
breathe differently in REM sleep than
a man and frequently have less deep
respiration. Therefore, we may suffer
from with low oxygen during that period of sleep and wake unrefreshed. If
you are overweight, this is much more
likely.
REM Behavior Disorder
Do you ever fall out of bed while
dreaming or seem to act out your
dreams? Do you ever yell in your
sleep? These symptoms can also be a
side effect of other medications you
may be taking. In some cases the diagnosis of REM Behavior Disorder may
also be made. Usually this is found in
older men and reflects a loss or damage
to an area in the brain connected
with the normal muscle paralysis
of REM sleep. Treatment is more
sedating medication.
Bruxism
Has the dentist commented that you
might be grinding your teeth? It is
possible that grinding your teeth wakes
you up without knowing it, and you feel
unrefreshed in the morning. If so, a
simple tooth guard made by the dentist
may be very helpful.
Finally, I hope that I have encouraged
you to seek the best treatment(s)
possible to increase your level of
wakefulness and alertness to optimal
levels. But don’t stop there. Be an
advocate for yourself. Don’t allow
yourself to believe that you are a victim
of narcolepsy. There are so many
helpful and well-tolerated medications
available, so with the help of a medical
professional, you will be very likely
to find your way out of your slumber
and into the world wide-awake.
A New Dawn for Americans with Disabilities
By Sharon D. Smith
It’s been a very long time coming and not a moment too
soon. In a non-election year it almost certainly would
have received major headline coverage. “It” is the ADA
Amendments Act, federal legislation signed into law
on Thursday, September 25, 2008 and effective
January 1, 2009.
As amended, the Americans with Disabilities Act
requires the determination of disability to be made
without regard to “mitigating measures”, striking a
precedent set by the courts and regularly cited by the
EEOC as grounds for denying a claim of discrimination.
Until now, courts have interpreted the language of the
ADA very narrowly. Whether a major life activity was
limited by one’s medical condition has been evaluated
based on one’s functioning with treatment. For PWN,
this has meant that narcolepsy symptoms relieved by
medications - and even naps taken during one’s lunch
or break time - have not been considered. Not
surprisingly, most PWN have not qualified as disabled
under the ADA and have been denied its protections.
Disability advocates sought this change to the ADA
for much of the 18 years since it came into being. The
change will enable many more disabled people to obtain
accommodations and stay in the work force. PWN
forced to file for disability can consider rejoining the
workforce, and today’s students can look forward with
greater hope that they can succeed in their chosen
careers.
Corporate legal and human resources departments have
until year-end to set new discrimination policies and
procedures and bring supervisors up to date. It will
be some time before employers can develop the bold
confidence of the past that the ADA is on their side.
15
Creative Corner
Wishful Dreaming
This NEW area of the newsletter
By Chris Goetting
has been developed for our
Watch for Details on
Rare Disease Day
Of narcolepsy.
The National Organization for
Rare Disorders (NORD) is
working with the European
Rare Disease Organization,
EURORDIS, to plan the 2nd
Annual Rare Disease Day, to
be held Feb. 28, 2009. Patient
organizations throughout the
United States will be urged
to plan activities to raise
awareness of rare diseases
on that day. Watch for
additional information soon
through the Narcolepsy
Network or on the
NORD website
picture or send us an excerpt,
But just then a fright,
(www.rarediseases.org).
we want to share it with all of
Another bad night.
members to share publicly their
favorite or most outlandish
A sentence, a snore
creative endeavors. We encourage
The cadence, a bore
all creative souls who support
people with narcolepsy to send
When sleeping does wake
their submissions to us at:
Can meaning retake
[email protected].
Please include your name, city,
The absence of thought
state, and what you enjoy most
For that sense he sought?
about your creative outlet with all
of your submissions.
In good chance he might
This nuisance will fight
Whether it be art, poetry,
And let go fin'ly
painting, scrapbooking, drawing,
jewelry design, pottery, etc., if
it is creative and you can take a
our readers!
Start planning NOW to Spread Narcolepsy Awareness
during
National Sleep Awareness Week
®
Sunday, March 1 – Sunday, March 8, 2009
and most especially on
Suddenly Sleepy Saturday
A Day for Narcolepsy Awareness
Saturday, March 7, 2009
Look for a Suddenly Sleepy Saturday link on our website
or call our office to learn how
You can make a difference!
GoodSearch will donate
to NN each time you use their
Yahoo-powered search engine.
We have earmarked proceeds
to fund member benefits.
The quick download does not
remove other search engines
from your toolbar. Visit
www.goodsearch.com today,
and recommend this site to
family and friends for use at
home, school and work!
New narcolepsy awareness initiative for 2009:
Narcolepsy Blog-A-Rama
Please Note
Membership Statements have been mailed to individual members for calendar
year 2009 membership. We ask that you renew early to help our office staff
manage the high volume at year-end. Renewal registrations are due on or
before December 31, 2008. You can help us to maximize staff efficiency and
free up staff time for more valuable projects by renewing online this year.
16
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on Professional Membership.
______ $35 - 1 Year Member ______ $150 - 5 Year Member ______ $750 - Lifetime Member
2009 INDIVIDUAL MEMBERSHIP DUES ______ new ______ renewal
______ $ __________ Complimentary: Please include me as a member, although I can’t pay all or any annual dues at this time,
for the following reasons: ____________________________________________________________________________________________
______ DONATION: I have included an additional donation of $ __________
______ PLEDGE: I wish to pledge an annual gift of $ __________ to be paid with the enclosed amount and
three (3) more quarterly installments of $ __________ each. (Reminder notices will be sent).
Please make your CHECK payable to NARCOLEPSY NETWORK, INC. Mail form and payment to:
Narcolepsy Network, Inc. • 79A Main Street • North Kingstown, RI 02852.
Forms with credit card payments may be faxed to (401) 633-6567.
All amounts are payable in U.S. DOLLARS by check, money order, or credit card. Funds may be sent from outside the U.S.
or Canada by wire transfer. Please call for information. Narcolepsy Network, Inc. (NN) is a 501(c)(3) non-profit organization.
Any donation over the amount of dues is tax deductible. NN will send a receipt for all donations. An annual report is
available upon request.
CREDIT CARD payments accepted. Please provide the following:
NAME (as appears on card): ____________________________________________________________________________________________
Credit card type (please circle):
Visa
Master Card
Credit card number: __________________________________ exp. date: _________ signature: ___________________________________
Fall 2008
Please see back of form for Survey of Interests, Needs and Skills.
17
Name ___________________________________________________________ Phone _____________________________________ E-mail _______________________________________
SURVEY OF INTERESTS, NEEDS AND SKILLS
(Requested of new members only, or renewing members who have not previously completed.)
We are a nonprofit patient organization, governed by and existing for our members. We wish to be an expanding network, serving present members and extending our resources to all persons with narcolepsy. Your personal interests and participation are
important. Please help us by completing this brief surv e y.
I. INTERESTS
A. My primary interest in narcolepsy is ____ for myself ____ for a family member or friend ____ professional.
B. We often receive requests from persons with narcolepsy for names and contact information of others with narcolepsy who
live in a certain area or who share a common interest.
1)____You may provide my: ____ name, ____ phone number, ____ address, ____ e-mail to others.
2)____ Please keep my name, phone number, address, and e-mail strictly confidential.
C.
1) I presently a)____ take part, b)____ do not take part, c)____ wish to take part in a support gro u p
2) I ____ am willing ____ am not willing to co-lead and/or assist in the development of a new support group
II. NEEDS
The greatest benefits I hope to receive from this organization are, in order of importance, the following:
1) ____________________________________________________________ 2) ________________________________________________________
3) ____________________________________________________________ 4) ________________________________________________________
III. SKILLS
Highest Educational Level _____________________________________ Main Work Experience ____________________________________
I have the following interests, experience, abilities, or professional skills in which I am willing to volunteer in order to improve
our organization’s network, resources, and programs on behalf of all persons with narcolepsy.
1) ____ contacting other members with important information: a) ____ telephone; b) ___ letter; c) ___ e-mail
2) ____ contacting state and federal legislators: a) ____ telephone; b) ___ letter; c) ___ e-mail
3) ____ distributing educational materials to schools, libraries, health fairs, etc.
4) ____ personally meeting newly diagnosed persons with narcolepsy
5) ____ being available for interviews by media reporters: a) ____ newspaper; b) ___ magazine; c) ___ T.V.; d) ___ internet
6) ____ writing personal and/or informative articles for:
a) ____ newspaper; b) ____ magazine; c) ___ internet
7) ____ appearing to talk about narcolepsy: a) ____ schools; b) ____ colleges; c) ____ civic groups; d) ___ health care groups
8) ____ I have, from my training or experiences, professional or special skills which I am willing to provide for activities of
Narcolepsy Network. (Please describe) ____________________________________________________________________________
_________________________________________________________________________________________________________________
a) ____ fundraising; b) ____ accounting; c) ____ legal; d) ____ writing; e) ____ graphic; f) ____ layout; g) ____ filming;
h) ____ website design; i) ____ programming; j) ____ health care; k) ____ re s e a rch; l) ____
other: ___________________________________________________________________________________________________________
9) ____ I am willing to assist these Narcolepsy Network committees and programs
a) ____ Advocacy (tracking and assisting in response to laws and issues affecting persons with narcolepsy)
b) ____ Conference (assisting in planning and conducting national and local conferences)
c) ____ E-mail (receive and correspond to e-mail questions and communication from members and others)
d) ____ Fundraising (develop and help implement local and national fundraising projects)
e) ____ Membership (outreach to invite new members and to develop support groups)
f) ____ N[ART] (create and contribute to artistic expressions re p resenting narcolepsy)
g) ____ Newsletter (writing, illustrating, printing and layout of quarterly newsletter)
h) ____ Publications (review, write, design and plan new educational materials)
i) ____ Website (design, maintenance, contribution to our website, and review of others)
18
MEDICAL ADVISORY
BOARD
Emmanuel Mignot, M.D., Ph.D., Chair
Stanford Center for Narcolepsy
Palo Alto, CA
Stephen A. Amira, Ph.D.
Brookline, MA
Robert W. Clark, M.D.
Columbus Community Health
Regional Sleep Disorders Center
Columbus, OH
Meeta Goswami, M.P.H., Ph.D.
Narcolepsy Institute
Bronx, NY
Lois Krahn, MD
Mayo Clinic
Scottsdale, AZ
J. Gila Lindsley, Ph.D.
Lexington, MA
Quentin Regestein, M.D.
Brigham & Women’s Hospital
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
BOARD OF TRUSTEES
Narcolepsy Network, Inc.
National Office
79A Main Street
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
i n f o rmational 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.
79A Main Stre e t
North Kingstown, RI 02852
or email
[email protected]
We welcome contributions to this newsletter.
Please send all comments regarding the
newsletter to:
Sara Kowalczyk
17 Henley Street, Unit B,
Charlestown, MA 02129,
or email
[email protected]
Deadline for Submissions:
Submissions are always welcome and
reviewed on an on-going basis. They will
be used whenever possible, as time and
space permit.
Patricia Higgins, RN, President
M o o restown, NJ
[email protected]
S h a ron D. Smith, CPA, Vice President
Syosset, NY
[email protected]
M o rt Rosenstein, Treasurer
Marblehead, MA
[email protected]
Sue Brockway Carella
Redwood City, CA
[email protected]
Yvonne DeBellotte, Secretary
Atlanta, GA
[email protected]
Mali Einen
Menlo Park, CA
[email protected]
A u d rey Kindred
B rooklyn, NY
[email protected]
Sara Kowalczyk, MA, MPH
Boston, MA
[email protected]
Michele Profeta
Peachtree City, GA
[email protected]
Heather Smith
Seattle, WA
[email protected]
Ramon M. Werbeach
Rootstown, OH
[email protected]
Trustee Emerita
Niss Ry a n , Founder
L a rchmont, NY
Advisory Trustees
The Network thanks Jazz Pharmaceuticals, Inc.and
Cephalon, Inc. for unrestricted grants that have
partially funded graphic design, printing, mailing
and other costs of publishing and distributing
this issue.
Mark Bronstein, Esq., Attorney
Boston, MA
Dana Gro ff, IT Professional
Seattle, WA
19
NN, Inc.
79A Main Street
North Kingstown, RI 02852
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