[acb-hsp] FW: [acb-l] Fw: [Missouri Chat] FW: Information for Totally BlindIndividuals (non-24 hour-sleep-wake disorder)

Mon Apr 30 12:44:20 EDT 2012

From: Annie Gallagher [ <mailto:Annie.Gallagher at vandapharma.com>
mailto:Annie.Gallagher at vandapharma.com] 
Sent: Friday, April 27, 2012 9:43 AM
To: Yocum, Patty
Subject: Information for Totally Blind Individuals

Hello,

If you are blind or you know someone who is blind please take a few moments
to read this message. We are reaching out to the blind community to help
raise awareness about a condition known as Non-24-Hour Sleep-Wake Disorder
(Non-24).  This condition is due to the lack of light signals needed to
reset the body clock. 

More than 50 percent of individuals who are totally blind may suffer from
this under-recognized condition which prevents them from maintaining a
regular schedule of sleep and wakefulness, impacting their health, lifestyle
and relationships. Those with the condition may experience bouts of severe
insomnia, sleep deprivation and excessive sleepiness during the day, all on
an irregular and rolling basis.

Over a year ago, we launched a clinical study to evaluate a potential
treatment for Non-24. The enrollment deadline for our clinical research
study is forthcoming. Without enough patients in the study, it will be
difficult to develop a treatment for this severe condition. Vanda
appreciates any assistance you can give in spreading awareness about Non-24.

For every person who completes our sleep survey, we will donate $25 to an
organization that supports people with blindness.  In the past year we have
been able to donate over $34,000 to various organizations across the
country.  See below the announcement about this survey and information about
Non-24.

Sincerely,

The Outreach Team

 <mailto:info at non24registry.com> info at non24registry.com 

For more information on Non-24 visit  <http://www.24sleepwake.com>
www.24sleepwake.com, follow us on Twitter
<http://twitter.com/#!/24SleepWake> @24SleepWake or "
<https://www.facebook.com/pages/24SleepWake/269350616423191?ref=nf&sk=wall>
Like" us on Facebook!

Announcement:

Do you ever feel like your sleep patterns are different than the rest of the
world? If you are totally blind, this could be due to a real sleep problem
related to the lack of light needed by your body's internal clock.  If you
think you might be affected, you can call 1-888-389-7033 or email
<mailto:info at non24registry.com> info at non24registry.com to take a sleep
survey or to learn more about an ongoing clinical research study, or go to
<http://www.non24registry.com> www.non24registry.com

Non-24 Education

Inability to Maintain a Good Night's Sleep May be a Sign of an
Under-Recognized Circadian Disorder

More than 50 percent of individuals who are totally blind may suffer from an
under-recognized condition which prevents them from maintaining a regular
sleep pattern; impacting their health, lifestyle and relationships.

Known as Non-24-Hour Sleep-Wake Disorder (Non-24-Hour), the condition can
push the timing of an individual's body clock off the 24-hour clock, making
them unable to maintain a regular schedule of sleep and wakefulness. Those
with the condition may experience bouts of severe insomnia, sleep
deprivation and excessive daytime sleepiness during the day, all on an
irregular and rolling basis.

"Sometimes I fall asleep and stay asleep," says Dan Roy, a Braille
translator for Horizons for the Blind in Des Plaines, Illinois who is
congenitally blind and has experienced recurring bouts of troubled sleep and
daytime fatigue since childhood. "Other times I wake up after a few hours
and can't get back to sleep." At work, Roy adds that he must ".try to fight
through my sleepiness" in order to maintain productivity. 

What is the Cause? 

For individuals with no light perception, the lack of cues for daylight can
cause the sleep cycle, one of many circadian biological rhythms, to be out
of synch from the 24-hour clock, gradually shifting their body's perception
of when it is day versus when it is night over the course of weeks and
months.   

Extensive research is underway to learn more about the cause and possible
treatment of the condition. One organization, Vanda Pharmaceuticals, is
conducting a series of nationwide clinical trials of people with total
blindness. These studies continue to recruit eligible participants and Vanda
has screened more than 1,400 individuals for potential participation to
date. Recently reported results from one of the trials demonstrated the
ability to reset the body clock and align it to a constant 24-hour day in
people with Non-24-Hour who are totally blind.

What is the Impact?

For some totally blind individuals the condition can have significant impact
on their social and occupational lives. "You can be in the middle of a
sentence and fall asleep for 30 seconds or so just because your body needs
that time so badly because it's not sleeping at night," says Mindy Jacobsen
of Brooklyn, New York,  who lost total light perception 15 years ago and
began experiencing symptoms of Non-24-Hour almost immediately. The
unpredictability of Mindy's sleep pattern forced her out of full time
employment, though she now maintains several part time jobs. 

What can I do if I have these Symptoms?

If you are experiencing an irregular sleep pattern you can reach out to your
primary care physician and ask whether the symptoms are an indication of
Non-24-Hour. They may recommend a referral to a sleep specialist for further
information. Maintaining a sleep diary to include timing, duration and
quality of sleep, as well as a record of consumption of caffeine, alcohol
and other medications may help guide your conversations with a physician.

Totally blind individuals experiencing symptoms of Non-24-Hour may also be a
candidate to participate in the clinical trials led by Vanda
Pharmaceuticals. The studies are evaluating an investigational treatment and
do not require any overnight stay in a lab and participants are compensated
for their time and travel expenses. For more information on the clinical
trials and to complete a survey to better understand the condition and
determine if you may be eligible to participate, call 1-888-389-7033, Email
<mailto:info at non24registry.com> info at non24registry.com or visit
<http://www.non24registry.com> www.non24registry.com.

We respect your privacy.

If you no longer wish to receive promotional email from Vanda
Pharmaceuticals, please send an email to
<mailto:unsubscribe at vandapharmaceuticals.com>
unsubscribe at vandapharmaceuticals.com to let us know.  Thank you

  _____  

To unsubscribe from the Chat list, send an email message to:
chat-request at moblind.org
with the word, unsubscribe in the subject line.
Visit the MCB home page at:
WWW.MoBlind.Org

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