the network - Narcolepsy Network

THE
NETWORK
A Publication of Narcolepsy Network, Inc.
Third Quarter 2011
University of California at San Diego Marketing Students Explore
Narcolepsy By Sara Kowalczyk, MA, MPH
The Spring 2011 semester at the Rady
School of Management at UC San Diego
(UCSD) included a competition for the
best Narcolepsy Awareness campaign
among 7 groups of MBA students. The
projects presented were the result of a
10-week long process involving marketing
research, data analyses, and campaign
development. In an effort to increase
narcolepsy awareness among elementary
school teachers and school nurses, Dr.
Ayelet Gneezy, professor of marketing at
UCSD, and Dr. Eveline Honig, Executive
Director of NN, teamed up for this crossdisciplinary initiative. Dr. Gneezy contacted
Dr. Honig not long after her teenage
daughter was diagnosed with narcolepsy,
and the two developed a rapport that later
developed into this innovative campaign.
communications challenges on behalf of
companies and organizations nation-wide,
while the single most important cause for
me — Narcolepsy — needed my skills,”
she explained. Hence the idea for the
Narcolepsy Awareness Campaign project
was born.
Dr. Gneezy has been a professor of
marketing for the Rady School of
Management at UCSD for 4 years. She
has taught many courses on marketing
communications. Her daughter’s diagnosis
was a call to action. “It seemed odd to have
so much knowledge, and tackle various
The objective of the course was to design
an awareness campaign for elementary
school teachers and staff (or the target
group) about narcolepsy. The students
conducted primary and secondary research
in order to provide a reality test for the
proposals. There were seven groups with
Narcolepsy Network is quite lucky that Dr.
Honig recognized Dr. Gneezy’s motivation
to increase narcolepsy awareness and
develop a mutually beneficial collaboration.
Being able to impact an organization like
NN is a rare opportunity for the average
MBA student. NN can equally benefit from
all of the fresh ideas spouting from talented
future marketing professionals. Dr. Honig
served as the judge for the final group
projects in the course.
continued on page 10
Eveline Honig with students
Dr. Gneezy
Unveiling the Patient Connection Mentoring
Program for Xyrem By Sara Kowalczyk, MA, MPH
In This Issue
• University of California at San Diego
Marketing Students Explore Narcolepsy
1
Jazz Pharmaceuticals, Inc. (JPI) and Snow Company are launching a mentoring
program for Xyrem, a medication used to treat narcolepsy, in mid-September.
This program, Patient Connection, is intended to teach people with narcolepsy
who currently take Xyrem to become patient mentors for the medication. JPI
is collaborating with Snow Company, whose focus is on facilitating patient
communication, to assist with training the patient mentors.
• Unveiling the Patient Connection Mentoring
Program for Xyrem
1
• A Word from our Executive Director
2
• From the President’s Desk
3
• New Study Sheds Light on Narcolepsy
4
• Social Security Disability Basics
5
• In my own words: Becoming a Patient
Connection Mentor
6
On Friday, July 15, 2011, JPI and Snow Company brought the first 15 mentors
(all people with narcolepsy, or PWN) together for a weekend in Palo Alto,
California to meet one another and begin learning their new role. Patient
mentors received legal, regulatory, compliance, and speaker training throughout
the weekend. All are volunteers.
continued on page 6
• 25th Anniversary Conference
8-9
1
A Word from
Our Executive Director
By Eveline Honig, MD, MPH
Dear Friends,
This summer I have been working
feverishly for NN through an exciting
period of growth and change for the
organization. It has been an invigorating
few months full of travel and meetings
in an effort to reinforce our existing
relationships and develop new ones.
During the past two months, the days have
me developing new skills and a deeper
understanding of what it takes to lead a
successful non-profit organization. While
this has been a demanding period of
time, I am left feeling a renewed sense of
enthusiasm and hope for a bright future.
In June, I served as a judge for a novel
college marketing course addressing
strategies for elementary schools to use for
narcolepsy education and advocacy. Dr.
Ayelet Gneezy, a marketing professor at
the Rady School of Management at UC
San Diego, developed the course for the
Spring 2011 semester. Please read more
about this exciting venture on page 1.
Thank you, Ayelet, for your motivation
to heighten narcolepsy awareness and
education.
In June, the annual SLEEP meeting
took place in Minneapolis, MN where
sleep researchers and clinicians came
together to share their progress and
recent breakthroughs. I had the pleasure
of attending this meeting with a number
of Board members including Patricia
Higgins, Ramon Werbeach,
Charlie Severson, and Shawn
Auman. NN had a booth to
fill, and fill it we did! Thanks
Eveline Honig, Patricia Higgins, Shawn Auman
to the hard working Board
and Ramon Werbeach representing NN at the
members, we were able to
SLEEP Conference
meet with representatives
from Jazz Pharmaceuticals,
Inc. and Cephalon, Inc. Most
importantly, we were able to
speak with many professionals
about NN’s mission in an effort
to encourage them to join as
professional members.
The very cosmopolitan city
of Minneapolis was not only
the home to the SLEEP
conference, but it also became
the location for the Board
of Trustees workshop with
Richard Gelula, an external
consultant, and me. Due to the
Eveline Honig, Oleta Elliott, former NN Trustee,
changing economic conditions, and Shirley Rodriguez, president of the School Nurse
keeping NN current is integral Organization of Arizona (SNOA)
to its survival. Necessary
organizational changes were discussed
I hope to see as many of you as possible
at the meeting (please see page 3 for
in Las Vegas to celebrate NN’s 25th
details). I was delighted to have Richard
Anniversary. It promises to be a special
Gelula share his insight and wisdom
conference filled with more novelty,
with the Board after serving as the
including our first 3-day conference
Executive Director for the National Sleep
(with sessions on Friday, Saturday, and
Foundation for nearly 10 years.
Sunday), and a chance to meet others with
narcolepsy, develop new friends, learn
In July, I went to Phoenix, Arizona to
a few things, and reconnect with others
present Sleep Disorders in Children to the
from past conferences.
School Nurse Association of Arizona
(SNOA). It was another wonderful
opportunity to teach these caring
professionals about sleep disorders and
narcolepsy. I am grateful to former board
member, Oleta Elliott, for coming to
the presentation and helping me answer
questions afterwards.
Patricia Higgins and Charlie Severson
sitting in the NN Booth at SLEEP
2
Jazz Pharmaceuticals, Inc. held a training
session for 15 patients with narcolepsy
who use Xyrem in mid-July as part of the
kickoff to a mentoring program Patient
Connection. While I did not attend this
informative gathering, it is another sign of
progress and initiative in the narcolepsy
community (see page pages 1, 6, and 7 for
more about this program).
Warm Regards,
Eveline Honig, MD, MPH
Help NN celebrate
our 25th Anniversary
by helping us grow!
Announce the celebration to your
family and friends, and that you
would appreciate their support
through their membership
and/or donation to NN.
And remind them that BOTH
are tax-deductible!
From the President’s Desk:
Restructuring NN Committees
By Patricia D. Higgins, RN
Nonprofit organizations have distinct
qualities. Leadership, fundraising,
marketing, and management challenge even
the strongest organizations. Without the
commitment of NN founders, past Trustees’
involvement, and the current hard-working
Board of Trustees, we wouldn’t be where
we are today. NN is extremely grateful to
all of its contributors who keep us afloat
during these uncertain economic times, and
to our valuable staff and executive director,
Board of Trustees, and other volunteers who
give their time and expertise to further the
organization.
Leading NN to a better future is one of my
primary objectives. For optimal growth,
the Board of Trustees hired a consultant,
Richard Gelula who is an experienced nonprofit professional and former Executive
Letter to the Editor
To the Editor:
I thought the summary of the interim report
from the Finnish National Narcolepsy Task Force
concerning the association between narcolepsy
and the H1N1 pandemic vaccine was well written
by Shruti Rangnekar, MPH. There are some issues
not mentioned in the interim report or the summary
that are important when considering the H1N1
influenza vaccine as the cause of the increase in the
incidence of narcolepsy. With graduate training in
immunology, biostatistics and epidemiology, I would
like to address these issues.
Upon first reading the nine fold increase in the risk
of developing narcolepsy in children ages 4-19
years of age who were vaccinated against the
H1N1 pandemic influenza virus, I too was alarmed.
However, there was a complete absence of statistics
in the interim report. With any epidemiological
study, appropriate statistical analyses are used to
evaluate the statistical significance of the findings.
The results of a study can seem large, but may
not be statistically significant. Statistics takes into
account variation in the data. For example, the
difference between two groups can be skewed
by the presence of one or a few outliers (extreme
data points) making the difference between groups
appear larger than it actually is.
This brings me to my second point. In the interim
report, the time from vaccination to the onset of
EDS (excessive daytime sleepiness) or cataplexy
was used to calculate the incidence of narcolepsy.
There was one case of narcolepsy where the onset
Director of the National Sleep Foundation,
to evaluate how NN currently functions and
offer advice for improving our operations.
Over the last few months, Richard created a
comprehensive report after examining our past
and our present day functioning. Part of the
report included recommendations for change in
order to benefit NN and bring the organization
to the next level. It was agreed by the Board of
Trustees that for major changes to be made, the
Board must meet in person with Richard about
his recommendations.
On Saturday, June 11th, the Board of Trustees
met for a day-long restructuring session in
Minneapolis, MN under the guidance of
Richard Gelula. Beginning with a review of
the report he wrote, Richard led meeting.
Richard guided the Trustees to make changes
in the organization to improve efficiency and
time was one day. The person was vaccinated and on
the same day showed symptoms of narcolepsy. Recent
research has shown the strong association between
narcolepsy with cataplexy and the adaptive immune
system, specifically CD4+ T cells. With any vaccination,
there are several days before the adaptive immune
system is activated. My personal opinion is that the
vaccination is unrelated to that individual’s development
of narcolepsy. Including this person would increase the
risk/incidence of the vaccinated group compared to the
unvaccinated group.
Lastly, the interim report did not measure any other
characteristics other than vaccination. Well designed
epidemiological studies will control for confounders.
Confounders are characteristics associated with the
causative factor in question and are causes of the
disease. For example, it could be that the vaccinated
group had a higher proportion of individuals with low
hypocretin levels than the unvaccinated group, and
these individuals would develop narcolepsy regardless
of being vaccinated. The increase in risk could be
due to hypocretin levels and not the vaccine. Without
measuring for possible confounders (such as hypocretin
levels) and thorough statistical analyses, the findings
of the interim report point to a need for further studies .
Due to these weaknesses, I do not think that the claim
of a “significant increase of narcolepsy in the vaccinated
group” from the Task Force’s interim report was valid
based on the evidence presented.Thank you for the
opportunity to address these important issues.
Sincerely,
Anthony Tam,
MS in immunology, PhD candidate in epidemiology
The New NN
Committees & Chairs
While the committees have
been condensed, we invite all
of our members to volunteer
some of their time and become
a part of committees. It takes the
involvement of many to make
this organization thrive. We
look forward to all who want to
become involved in shaping our
future. Volunteers can join any of
the committees below. Contact
information for committee chairs
is on page 11.
Membership: Joel Maue
Programs: Charlie Severson
Nominations: Sara Kowalczyk
Fundraising: Shawn Auman
Communication: Ramon Werbeach
foster growth. His calm manner, ready
smile and attentive ear were always
there when we engaged in conference
calls and again at our in-person board
meeting.
Trustees decided that committee
restructuring would be necessary to
move the organization forward. Instead
of having 10+committees, it has been
wittled down to the basics (see New NN
Committees & Chairs). This restructuring
will prompt volunteers, staff, and Board
members to work together in new
groups that will hopefully foster more
efficient communication between those
working in similar areas.
Committee reorganization is only
the very beginning of the necessary
changes that must be made in order
for our organization to grow. Future
initiatives include changes to Board
member responsibilities, a commitment
to fundraising in order to support our
programs and initiatives, increasing the
number of personal and professional
members, and developing a new
marketing strategy to improve our
visibility as a leading sleep disorders’
association.
Survival of the organization will
require dedicated leaders to initiate and
reinforce these changes. I look forward
to being at the helm during this process.
We have come such a long way in 25
years, and I look forward with
great anticipation to a bright
and successful future.
3
New Study Sheds Light on Narcolepsy
By Sean M. Kelly, OMS-III, MA, NREMTP
A recent breakthrough using
optogenetics to understand the role of
the hypocretin, or orexin, neurons in the
physiology of narcolepsy was published
in the July 20, 2011 issue of the Journal
of Neuroscience. The research article1,
authored by Dr. Tomomi Tsunematsu
and Dr. Thomas Kilduff from the
National Institute for Physiological
Sciences, Okazaki, Japan, explained how
they used optogenetics to manipulate
hypocretin neuronal activity in the brain,
and how that manipulation influences
the cycles associated with being asleep
and awake. This study has brought the
scientific community one step closer
to explaining the inner workings of
narcolepsy.
Optogenetics is a scientific term for
combining the use of light and genetics
to better understand the neuronal circuits
in living mammals’ brains. The cover
of the Fall 2010 issue of The Network
highlighted an article by Sharon Smith
(entitled Shedding Light on Narcolepsy)
that introduced us to optogenetics and its
potential for helping to understand and
perhaps in the future, treat narcolepsy.
Dr. Tsunematsu and Dr. Kilduff induced
slow wave sleep, also known as non-REM
sleep, by shutting off the hypocretin
neurons using an orange fiber optic LED
light in genetically modified mice bred
4
for this purpose. This study provides
the first example of sleep induced by
optogenetic switching off of a specific
type of neuron.
Genetic modifications were made to
the mice allowing the researchers to
control the transition from awake to
non-REM sleep. For this latest research,
a special genetically modified population
of mice was created where a gene that
shuts off the hypocretin neurons, when
exposed to orange light, was placed
into the brains of these mice. When
an orange light was turned on, it shut
off the hypocretin neurons, causing the
mice to fall asleep. That is, as soon as the
hypocretin neurons stopped their activity,
the mice fell asleep.
The mice fell into non-REM sleep,
according to the study, but sleep-onset
REM, a behavior associated with
narcolepsy diagnosis in humans, did not
occur. The researchers gave a couple of
potential reasons for this outcome. It is
possible that sleep-onset REM did not
occur because the experiment did not last
more than 1 to 2 minutes for each trial.
Alternatively, non-REM sleep induced
by the orange light shutting off may
not be identical to naturally occurring
non-REM sleep that occurs without
optogenetics manipulation. More
research on this is needed and ongoing.
What are hypocretin
neurons?
Why are there two names
for the same group of
neurons?
Hypocretin neurons,
also known as orexin
neurons, are scientific
terms for a group of
neurons in the lateral
hypothalamus of the
brain that are associated
with the development of
narcolepsy (most often in
narcolepsy with cataplexy).
Often in narcolepsy, there
is reduced or nearly absent
amounts of hypocretin
being produced in
the brain.
There are two names for
these neurons because two
separate teams of researchers
— one studying sleep, the
other studying neuroendocrine
function — discovered their
connection to narcolepsy
at the same time. Sleep
researchers named these brain
chemicals hypocretins while
neuroendocrine researchers
named them orexins. Both
groups continue to use their
separate terms.
The authors also observed that the
transition into non-REM sleep
corresponded to decreased hypocretin
activity in the dorsal raphe nucleus
(DRN). The DRN is a part of the
brain that has long been thought to be
involved in wakefulness. In terms of
narcolepsy, this study may have helped
researchers better understand how the
symptoms of narcolepsy often begin
with excessive daytime sleepiness, and
progress over time to the rest of the
symptoms of narcolepsy, including
cataplexy. Hence, optogenetics has
already provided considerable insight
into the intricate workings of narcolepsy
and how it develops. Knowing these
details may ultimately be beneficial for
helping researchers come up with new
and improved narcolepsy treatments.
http://www.jneurosci.org/content/31/29.toc
1
How do people with narcolepsy differ
from research animals with narcolepsy?
Research animals with narcolepsy have been bred
so that they do not have hypocretin receptors,
and without them, the animals can’t process the
neurohormone. They may produce a lot or a little
hypocretin, but it doesn’t matter because they don’t
have the receptors to bind to the neurohormone.
This is very different from humans who typically
lack the ability to produce the neurohormone
(the receptors seem to work fine). In people
with narcolepsy, hypocretin levels are measured
through a process called a spinal tap. Research
studies have shown that people with narcolepsy,
on average, have lower levels of hypocretin than
control subjects. However, averages from research
studies don’t necessarily mean all people with
narcolepsy have low or no hypocretin.
Social Security Disability Basics
By Ben Burnside, Esq.
Narcolepsy and idiopathic hypersomnia (IH) can have a pervasive influence on one’s
life, and one of the many critical challenges can be the ability to secure and maintain
gainful employment. Despite exerting enormous effort and taking sometimes
desperate measures, many people with narcolepsy/IH are unable to sustain full
time employment as a result of their symptoms and/or medications’ side effects.
The burden of occupational disability is usually compounded by having to face the
reality of financial hardship, and an often bewildering process of applying for and
fighting to obtain disability benefits. The purpose of this article is to provide basic
information about Social Security disability benefits.
By way of introduction, I am a 31-year-old attorney in North Carolina who
helps disabled individuals obtain disability benefits from the Social Security
Administration (SSA). After I had been practicing law for about two years, at
the age of 28, symptoms I had been struggling with for some time dramatically
worsened. After a few false starts, I finally found my way to a sleep specialist. After
undergoing sleep studies, I was diagnosed with narcolepsy without cataplexy. I am
incredibly fortunate in a number of ways that allow me to control my symptoms
well enough to continue to successfully practice law on a full time basis, with some
accommodations. However, I talk with and represent many honest, hardworking
people with narcolepsy/IH and other physical and mental health impairments
Social Security Disability
(SSD)
Q1: What is SSD?
A1: SSD is a government program
developed for workers who find
themselves unable to work for
longer than a year (due to mental
or physical problems or both),
generally after a period of time
during which they were able to
work. A sobering statistic is that
one in four of today’s workers will
become disabled before reaching
retirement age. As such, SSD is an
important government program
to have for those who become
disabled during their careers. It
is even more important when
factoring in that 69% of the private
sector workforce has no long-term
disability insurance, so SSD is the
only safety net for many workers.
Q2: Who pays for SSD?
A2: Everyone who works pays for
SSD through his or her taxes. Think
of it like a public insurance policy
– you pay your premiums while
working by paying taxes, so that if
you become disabled you can get
SSD benefits.
Q3: Who is qualified to receive SSD?
A3: You have to pay a certain
amount into the system before you
are eligible to receive SSD benefits.
For every year you pay taxes,
you receive “work credits” (up to
four per year), and once you have
enough work credits, you become
“insured,” meaning that if you
become disabled you can receive
SSD benefits. How many work
credits are needed depends on your
age and other factors.
Once your SSD application is
approved, you will receive monthly
monetary benefits. In addition, you
become eligible for medical benefits
through Medicare after 2 years of
receiving SSD benefits.
Certain members of your family
may also qualify for benefits based
on your work record. For example,
if you have paid enough into the
system, then your children (who
are under the age of 18) may draw
monthly benefits on your work
record.
Q4: What is the average monthly
disability benefit under SSD?
A4: The average monthly SSD
Ben Burnside, Esq.
who, through no fault of their own,
cannot sustain full time employment
for a variety of reasons. If you find
yourself in this situation, you are not
alone. You may benefit from learning
general information about Social
Security Disability from this article,
including recommendations about
where to find further guidance.
benefit is $1,065. The amount of
your monthly benefit is determined
based on the wages you have
earned over your entire working life.
In most circumstances, your monthly
disability benefit is equal to what
your full retirement benefit would be.
Supplemental Security
Income (SSI)
Q5: What is SSI?
A5: SSI is a similar government
program designed to provide
monthly cash benefits and
medical benefits to those who find
themselves unable to work for
longer than a year (due to mental
or physical problems or both). The
rules for showing medical disability
are the same in SSI and SSD. The
difference is that you can get SSI
even if you have never worked; there
is no work credit requirement.
Q6: Who pays for SSI?
A6: SSI is a needs-based program
financed by US general treasury
funds. Again, where the money
comes from to finance this program
is different than for SSD because
continued on page 7
5
In my own words: Becoming a Patient Connection Mentor
By Patricia D. Higgins, RN
“Don’t be afraid to ask q
not have all the answer
listening is the most
I was both delighted and honored to
have been contacted for a patient mentor
interview, and to later be selected was
an added bonus. The best way to truly
understand a program is to experience
it from the get-go, I thought. That
thought came to fruition, and I spent the
weekend of July 15th in the sunny city of
Palo Alto, CA.
As president of NN, I was initially
interested in learning about this program
so that I could help explain it to the
narcolepsy community. I was curious
about the potential of this patient
education program through creating
mentors from within the narcolepsy
community. Once I was interviewed
by Melinda Snow, RN, MSW, I felt
assured that she was excited to facilitate
this program and that individuals had
been selected through a comprehensive
process. Soon after the interview, the
wheels were put in motion for me to
attend the mentor training weekend,
and I knew I would return home with
more knowledge and a new perspective.
The Patient Connection training
program began with fifteen people with
narcolepsy (PWN) from across the
country arriving for the Meet and Greet
Friday night. Communication experts
from Snow Company, representatives
from Jazz Pharmaceuticals, Inc. (JPI),
and the future patient mentors sat
together for the first time. While we
introduced ourselves and told our stories
of harried travel, we began to relax and
become comfortable with one another.
I believe that this initial meeting set the
tone for the remainder of the weekend
and facilitated the development of many
Unveiling the Patient Connection Mentoring Program for Xyrem
continued from page 1
JPI and Snow Company put together a detailed and extensive program for the
patient mentors. From the educational component regarding the roles and
responsibilities of a patient mentor to the role playing where the mentors could
practice what they learned, the weekend was a success. JPI even kept the PWN
in mind when planning the menu by serving alcohol-free fresh fruit cocktails and
low-carbohydrate meals.
Based on the weekend’s activities, there are high expectations for the program’s
future. It has the potential to be a valuable and much needed resource to help PWN
make more informed personal decisions surrounding the use of Xyrem.
In 2007, the American Academy of Sleep Medicine (AASM) recommended
sodium oxybate, distributed currently by JPI as Xyrem, as a standard of
care for treatment of excessive daytime sleepiness (EDS) with narcolepsy.
Xyrem is approved for use in the United States, Canada, and Europe, and
has been marketed in United States since 2002.
6
positive relationships. The conversation
ranged from lively stories to expressing
fears that that make us feel vulnerable
as PWN. Being able to share in such an
intimate setting with others allowed us
to laugh, cry and begin to understand
the varied life situations that we each
brought to the table. The open dialogue
that began on Friday night continued
throughout the weekend.
Saturday breakfast began in a private
dining room around three intimate
round tables to facilitate light
conversation. There was an assortment
of fresh fruit juices, entrees and steaming
hot coffee. It is there that I met Russell J.
Cox, Senior VP of Sales and Marketing
for JPI. Russ engaged the PWN at the
breakfast table by asking questions about
ourselves and listening to our responses.
I was extremely fortunate to have met
Bruce C. Cozadd, chairman and Chief
Executive Officer of JPI, who offered me
the following advice, “Don’t be afraid
to ask questions and/or admit that you
do not have all the answers; be yourself,
and remember that listening is the most
important skill to being a leader.”
It was a pleasure to put Melinda Snow’s
face with her name after the wonderful
interview I had with her. Melinda was
well-spoken, friendly and eager to meet
the mentors as well. She made sure
that each of us were keep informed and
interested in what was to follow on the
program. The team leaders from Snow
Company were warm, gracious and
easy to mingle with. The small group
atmosphere facilitated the development
of close bonds that I am certain will
continue to grow despite the distances
between us.
questions and/or admit that you do
rs; be yourself, and remember that
important skill to being a leader.”
Social Security Disability Basics continued from page 5
employers and employees do not
contribute to it.
Q7: Who qualifies for SSI?
There were many informative sessions
about speaking, compliance, legal
and regulatory training, adverse
event reporting, and opportunities to
role play. There were more informal
moments to the weekend as well
including a group and individual photo
shoot that was entertaining and fun.
As for the program itself, Patient
Connection is a phone-based program
for people living with excessive daytime
sleepiness (EDS) and/or cataplexy
with narcolepsy. These individuals
are either considering or are new to
Xyrem therapy. This initiative will give
individuals the opportunity to speak
with someone with the same condition
who also use Xyrem. The objective is to
provide support and encouragement so
that they can make an informed decision
about managing their symptoms. The
program will be one more option for
support and guidance for individuals
who would like to speak to someone
who has had experience with taking
Xyrem. I look forward to the initiation
of the program, and on reporting more
about the positive role it will play for
PWN in the future.
A7: To qualify for SSI, you have to
be unable to work any full-time job
for at least a year due to mental or
physical problems, or both. You
also must have limited income and
resources. For example, a single
person can have no more than $2000
worth of resources and a couple/
family can have no more than
$3000 worth of resources. For more
information about what counts as
resources and income, see “Further
Information and Resources” listed
below.
Q9: How do I file a claim with SSA?
A9: There are three ways to apply
for SSD or SSI:
1. Apply at www.ssa.gov;
2. Make an appointment for
someone to take your claim by
phone by calling 800-772-1213; or
3. Make an appointment to make
your claim in person at your local
office by calling 800-772-1213.
Q10: When should I expect a
decision from SSA about a claim I
filed?
In addition, children with disabilities,
including narcolepsy, may qualify for
SSI. However, their parents must fall
under the same definition of having
limited income and resources as
outlined above.
A10: A decision from SSA usually
takes 3-5 months. The chance
of being approved on an initial
application in North Carolina
(where I practice) is 31%, but this
percentage varies by state. I try to
prepare my clients to expect that
their initial claim will be denied, and
that this is often part of the process.
I also remind my clients that the
denial letter often contains standard
language, so they should try not to
be offended by the outcome or the
wording of it.
Q8: What is the average monthly
disability benefit under SSI?
Q11: How does the appeal, or
reconsideration, process work?
A8: The average monthly SSI benefit
is approximately $500 (with a
maximum monthly federal benefit
of $674).
A11: SSA gives applicants a
limited time to appeal the decision
(generally 60 days). Consulting an
attorney early during the appeals
Once you are approved for SSI,
you will receive monthly assistance
and you will be eligible for
medical benefits through Medicaid
immediately.
continued on page 10
Further Information and Resources
To calculate your anticipated SSD benefit: http://www.socialsecurity.gov/
planners/benefitcalculators.htm
To request or obtain a Social Security Statement on the internet: http://
www.socialsecurity.gov/mystatement/
To find your local office via internet: http://www.ssa.gov/locator
Information about Income and Resources for SSI: http://www.ssa.gov/ssi/
text-understanding-ssi.htm
To find an attorney: Call the National Organization of Social Security
Claimant’s Representatives Referral Service at 1-800-431-2804
7
Top Ten Reasons to attend the NN Conference
10 Attend the first conference in NN history with nearly 3+ days of
events running from Thursday evening’s welcoming reception to
concluding remarks on Sunday afternoon
9
Bump into Cirque du Soleil performer and NN member Trinity
Holmes
8
Participate in an educational session dedicated to beginning and
maintaining successful support groups
7
Stay on the Vegas strip for an extremely low rate
6
Press your luck and/or learn how to play Blackjack, Poker, or
Craps
5
Check out the Hospitality Suite for a less formal hang out and
delicious cookies
4
Further develop your “Narcoleptese” skills
3
Learn the basics with Dr. Eve Rogers in Narcolepsy 101
2
Attend Health and Wellness sessions to improve your quality of life
1
For new attendees, meeting someone else with narcolepsy
Come join us at the
NN Annual Conference in
Las Vegas, Nevada:
Thursday, Oct. 13 – Sunday, Oct. 16, 2011
Help us celebrate our
25th Anniversary!
Highlighted Speakers*
Dr. Eve Rogers
The REAL # 1 Reason to attend the NN Conference:
This was everything you said it would be (and
more!): life-changing and exhausting but
exhilarating! I want to thank each and every one
of the people who spent what I imagine must have
been countless hours putting this together (as well as
the volunteers who worked thru the convention!)…
not an easy feat for a group of people challenged with
constant sleepiness and exhaustion! You all amaze
and inspire me…and I am so grateful. Know that
it is all worth it because you really are changing
lives…I know you did mine!
Linda McCarthy-Ruston
[email protected]
8
Dr. Michael Thorpy
Dr. Rubin Naiman
Dr. Neil Feldman
Location: Stratosphere Hotel
Address: 2000 Las Vegas Blvd. South,
Las Vegas, NV 89104
Phone: 800-998-6937
(mention ‘narcolepsy’ for room rate)
Check NN Website for updated
conference details
*Conference speakers are
subject to change
Las Vegas:
A Travel Destination
with Something for
at www.vegas.com to be one of the
comprehensive websites listing an
incredible amount of information about
activities for the chocolate lover to
pinball enthusiast to historian, including
something for everyone in-between. The
city of Las Vegas promises to keep you
entertained through your entire stay.
Everyone
By Marcia Coy
I hope that you are planning on attending
this year’s annual conference in Las
Vegas, NV. As part of the Conference
Committee, I will be putting information
about things to do in Las Vegas in the
registration folders for the conference.
Even if you are not planning on visiting
Vegas this year for the conference,
the following list of off-the-beaten
track attractions offers something for
everyone and is sure to entice Las
Vegas to be next on your list of travel
destinations. Or perhaps you will even
give attendance at the conference a
second thought – and I hope that you do!
Contrary to popular belief, Sin City, as
it is often referred to, is actually full
of inexpensive adventures that are
incredibly unique and family friendly.
In addition to the more commonly
known casinos, show, and attractions,
I have found interesting places to visit
The Sunbelt Classic and Antique
Auto Museum
Ethel M. Chocolate Factory and
Botanical Cactus Gardens Details
Phone: (702) 649-0110 to schedule a tour
The Pinball Hall of Fame
Admission: Free
1610 E. Tropicana,
Las Vegas NV 89119
Hours: Opens weekdays at 6 am
The Sunbelt Classic and Antique Auto
Museum is privately owned and not
advertised openly. Tours are free but
you must call to make arrangements
ahead of time. There may already be a
scheduled tour that you can join, or gather
up a couple of friends and take your own
group. Check out the website, www.
sunbeltcars.com, to get a preview of
these beautifully restored vehicles.
Many of the activities on the list below
require you to do some pre-vacation
planning, so make sure you prepare
and make proper reservations for your
activities in advance of arriving in Las
Vegas. For those of you who will be
arriving earlier or staying after the
conference festivities, I hope that you
will be able to take advantage of some
of these wonderful, family-friendly, and
inexpensive opportunities to enjoy all that
Las Vegas has to offer:
2 Cactus Garden Drive Henderson,
NV 89014
Phone: (702) 435-2655
Admission: Free
Admission: Free
Hours: 11 am -11 pm (Sun to
Thurs; open til midnight Fri & Sat)
Hours: Open daily, 8:30 am - 5:30 pm
Not only is The Pinball Hall of Fame a
place of great history and interest, its
serves as a way to help others as it
is a registered non-profit. The money
that goes into the pinball games after
covering basic expenses is donated
to the Salvation Army. A place where
playing games is never a waste of
time, a visit to the Pinball Hall of
Fame can serve dual purposes.
Titanic: The Artifact Exhibition
3900 S. Las Vegas Blvd. Las Vegas,
NV 89109 (702) 492-3960
Admission: $28 Hours: 10 am -10 pm
This incredible exhibition, houses more than 300
artifacts and replicas of the ill-fated ship and its
passengers traveling on her maiden voyage. It’s a
beautiful collection, not restored, but conserved to show
the pieces as they were found; almost as if in homage
to the inability to turn back in time. The tour guides tell
stories of the tragedy and give insight to an incredibly
historic moment, which still tugs at our heart strings
even to this day. Purchasing your tickets ahead of time
is recommended as this is a very popular exhibit.
The Ethel M. Chocolate Factory is
located about 10 miles outside The Las
Vegas Strip. The self-guided tour of the
factory is absolutely free and you have
the chance to sample some of the best
chocolate in the country at the end of
the tour. Stick around a bit and meander
through the Cactus Gardens where you
will see some of the most amazing, and
often times, rare succulents anywhere.
Hosting both botanical beauty and
chocolate, this is one destination worth
a 10-mile drive.
The Neon Museum (aka: The Boneyard)
Las Vegas Blvd.
Downtown Las Vegas, NV
Admission: $15
Fall tour times: 12 pm and 2 pm
This is one destination requiring advanced planning. Though many have
heard of this small national treasure turned non-profit, it is not actually
open to the public and is available for touring only through making prior
arrangements via the website at www.neonmuseum.org. If you would like
to tour the former city lights of Vegas at The Neon Museum, be sure and
visit the website and make all your plans at least two weeks in advance.
9
University of California at San Diego Marketing Students Explore Narcolepsy continued from page 1
and staff. The survey results concluded
that the target group is loosely aware of
narcolepsy. When asked more specific
questions about the symptoms of the
disorder, they were unsure of the answers,
what behaviors a student with narcolepsy
might have in a classroom, and what they
should do or how they could help a student
with narcolepsy.
Eveline Honig with students
five members each, and they competed with
one another to develop the best marketing
strategy. At the end of the semester, the
groups presented their projects to a panel
of judges comprised of the Rady School
faculty, staff, students, and Dr. Honig who
picked the campaign that stood out from
the rest.
The winning group concluded in their
secondary research that Narcolepsy
Network’s strengths are being a “onestop-shop” and trusted resource for those
diagnosed with narcolepsy. They also
concluded that one of NN’s weaknesses
is that they are not reaching all who are
affected by narcolepsy, and that one major
threat to NN’s future is the competition
it has with patient support organizations
on attracting consumers’ attention and
involvement.
Many students conducted their primary
research with surveys and/or by
interviewing elementary school teachers
There were many creative ideas to raise
awareness in the target group. One of the
ideas was to have a Wake up to Narcolepsy in
the Classroom campaign in the third week
of September with coffee mugs, brochures,
flyers, posters and a message on the
teachers’ Facebook page. This group took
the extra effort to create a well-designed
coffee mug as a prop for their presentation.
A Pajama Contest and a National Naptime
were suggested by another group to create
a lasting memory for participants about
the positive value of adequate sleep and
napping that especially benefit people with
narcolepsy. Another idea proposed by yet
another group suggested titling brochures
in a more compassionate and caring way.
All groups gave detailed descriptions of the
Message Strategy, Creative Strategy and
the Media Strategy (which are components
of an overall marketing strategy).
Facebook and LinkedIn were mentioned
several times as integral components
of a successful Media Strategy. Part of
the Creative Strategy was to empower
people in education to make a difference.
Budgeting was a part of the projects as well.
The final group presentations showed the
time and dedication that the groups put
into them.
“I was very impressed with the
sophisticated projects and hope we can
work with some of these talented and
bright marketing students in the future,”
Dr. Honig commented after seeing all of
the group presentations. “It was clear that
the students understood not only what
narcolepsy is, but also about the importance
of supportive people in their lives and the
added benefit of having their teachers
aware of their condition.”
“We have Dr. Gneezy to thank for
incorporating narcolepsy education and
awareness into the course, and for including
NN in such a creative way. I was delighted
to play a key role in judging the projects,”
Dr. Honig added.
It is clear that the new marketing course
offered at UCSD was a win-win for all, and
NN hopes to be a part of similar future
endeavors. Perhaps the course will serve
as a prototype for other professors and
teachers to follow in the future. Dr. Gneezy
has initiated the movement to bring
narcolepsy to the classroom. Now, it is up
to the rest of us to continue more of the
same. Here at NN, we are ready to assist,
collaborate, and continue these efforts.
Keep watching The Network and the NN
website for future developments.
Social Security Disability Basics continued from page 7
process to ensure all deadlines are
met is good advice.
There are three ways to file a request
for reconsideration when your initial
application has been denied:
1. Fill out a form online at
www.ssa.com;
2. Call or visit your local office; or
3. Retain an attorney to file on
your behalf.
Q12: How long will it take to receive
a decision on reconsideration?
A12: It usually takes between
3-6 months for a determination
to be made from the request for
10
reconsideration. Only about 13%
of claimants are approved at
reconsideration in North Carolina,
but this again varies by state.
And similarly to the initial denial,
claimants have typically 60 days to
appeal.
Q13: Once I get my second denial,
where do I go from there?
A13: When your request for
reconsideration is denied, it can be
very frustrating. However, there is a
light at the end of the tunnel. Once
you receive your reconsideration
denial, your next step is to request
a hearing before an Administrative
Law Judge. To file for a hearing request:
1. Fill out a form online as
www.ssa.gov
2. Call or go to your local office; or
3. Retain an attorney to file on
your behalf.
The worst part about the hearing is
the few months to a year or more
that you will wait for your hearing to
be scheduled. The length of the wait
depends on where you live.
The best part of the hearing in North
Carolina, at least, is that most people
are approved at the hearing level,
and this is similar to most parts of
the country.
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, MD
Mayo Clinic
Scottsdale, AZ
J. Gila Lindsley, Ph.D.
Lexington, MA
Quentin Regestein, M.D.
Brigham & Women’s Hospital
Boston, MA
David B. Rye, MD, PhD
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
110 Ripple 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.
110 Ripple Lane
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.
PEDIATRIC ADVISORY BOARD
Suzanne Moore-Darms
Marlton, New Jersey
Michael Eig, Esq.
Chevy Chase, Maryland
Mali Einen
Menlo Park, California
Patricia Higgins, RN, President
Moorestown, NJ
[email protected]
Sara Kowalczyk, MA, MPH,
Senior Vice President
Charlestown, MA
[email protected]
Ramon M. Werbeach, Vice President
Rootstown, OH
[email protected]
Sarah DiDavide, Secretary
River Grove, IL
[email protected]
Mee Ng, Treasurer
New York, NY
[email protected]
Mort Rosenstein
Marblehead, MA
[email protected]
Sue Brockway Carella, Founder
Redwood City, CA
[email protected]
Shawn Auman
Cochrane, WI
[email protected]
Joel Maue
Grandy, MN
[email protected]
Holly Regan
Brooklyn, NY
[email protected]
Elizabeth Scott
Avon Park, FL
[email protected]
Charlie Severson
Minneapolis, MN
[email protected]
Trustee Emerita
Agnes Kenny, MD
Peru, Indiana
Suresh Kotagal, MD
Rochester, Minnesota
BOARD OF TRUSTEES
Niss Ryan, Founder
Larchmont, NY
The Network thanks
Cephalon, Inc. for an unrestricted grant that has partially
funded graphic design,
printing, mailing and other costs
of publishing and
distributing this issue.
On the back cover:
Sara Lee Hinnant, NN member and poet,
kindly agreed to share the moving piece
created on 10/25/10 and titled Cat Dances.
11
Eyelids do dances
cat aplexy
attacks
When I sit me
down to think
flattened
By yet another loss.
Grocery store dances
consist of me
falling
When leg muscles
without grace
give way
and I meet
The floor flat.
The kitten dances
across the floor
in great
Ballet movements
on her way to attack
Papa Cat.
Cat Dances
Creative Corner
NN, INC.
110 RIPPLE LANE
NORTH KINGSTOWN, RI 02852
NONPROFIT ORG.
U.S. POSTAGE
PAID
MINNEAPOLIS, MN
PERMIT NO. 30101
forwarding service requested — return postage paid