[nfbwatlk] FW: [Nfbnet-master-list] Fwd: Vanda Sleep Study

Mike Freeman k7uij at panix.com
Sat Oct 1 16:38:14 CDT 2011

I'm certain that most of you have seen the message reproduced below.
Nevertheless, I thought I'd be a good guy and re-post it here in case some
of you wish to participate in the study described.


I confess to considerable skepticism myself; I tend to think this is yet
another bunch of medical researchers looking for a project that validates
their own preconceived notions about blindness. In my view, almost all sleep
problems of the blind can be solved by one or more of the following:


. a CPAP machine;

. Keeping regular hours;

. doing enough physical work or engaging in sufficiently strenuous exercise
to tucker yourself out and

. cutting back on stress, especially shortly before bedtime.


But these ideas are far to prosaic for the tastes of most researchers!


Anyway, enjoy.


Mike Freeman



From: nfbnet-master-list-bounces at nfbnet.org
[mailto:nfbnet-master-list-bounces at nfbnet.org] On Behalf Of David Andrews
Sent: Saturday, October 01, 2011 12:22 AM
To: nfbnet-master-list at nfbnet.org
Subject: [Nfbnet-master-list] Fwd: Vanda Sleep Study


I have been asked to circulate this.  If you participate in the initial
survey, $25 is donated to the organization of your choice -- which can be
the NfB.  I did the initial survey and it was painless.

David Andrews

Dear David,
On behalf of Vanda and all of those who suffer from Non-24-Hour Sleep-Wake
Disorder (N24HSWD or Non-24) we thank you for participating in our sleep
survey and showing and interest in our study. Because of your participation
we have so far donated more than $25,000 to various national and local
organizations that support individuals with blindness. 
The deadline to enroll patients is approaching and we are writing to you now
because we want your help to spread the word about this very important
research among your friends and colleagues who may be interested.  Our
research is taking place at 25 locations in the US, and in France and
Germany. However, without enough participants, it will be challenging to
develop a treatment for Non-24. 
If you know of anyone who may be interested in our research, please refer
them to 1-888-389-7033. As a reminder, we have set up a registry and a
survey that are available by phone and on the web. Below is the announcement
of our study with phone, email and web contact information and eligibility
Your efforts are sincerely appreciated. Thank you for your ongoing support.

Annie Gallagher
Outreach Specialist
Vanda Pharmaceuticals Inc.
9605 Medical Center Drive, Suite 300
Rockville, MD 20850
Annie.gallagher at vandapharma.com
(240) 599- 4524
P.S. A screen-reader friendly website (www.24sleepwake.com
<http://www.24sleepwake.com/> ) dedicated to Non-24 is now available. This
site contains News and Information, FAQs, and a forum to share your
experience with Non-24.

Do you ever feel like your sleep patterns are different than the rest of the
world?  Do you sometimes feel the unwanted urge or need to fall asleep
during the day time when you need to be awake?  Do you also find that you
feel just too wide awake to fall or stay asleep during the night time?  If
you are blind, this could be due to a real sleep problem related to the lack
of light needed to keep your body's internal clock in sync with the day and
night cycle.  If you or someone you know might be affected, please call
1-888-389-7033 or email info at non24registry.com to learn about an ongoing
clinical research study that is evaluating a new investigational treatment
for this type of sleep problem. When calling or online at
www.non24registry.com <http://www.non24registry.com/> , you can also
complete a short sleep survey.  For each completed survey, $25 will be
donated to an organization that supports individuals with blindness. You may
be eligible to participate in the clinical trial if you are between 18 and
75 years of age and are totally blind. Volunteers will be compensated for
their participation in the clinical study and will receive study related
medication, medical evaluations, and transportation at no cost. 

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