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

Sun Oct 2 13:49:48 UTC 2011

Mary Ellen:

I agree with what you say below.

As to your final frustration, we've never had it so good. If you're using a
Victor Reader Stream, BookSense, Book Port Plus or NLS player, just before
you hit that Play Button and drift off to that great literary mecca in the
sky, place a bookmark  at your starting point. Definitely lessens the stress
when you wake up and want to continue more-or-less where you were. On the
other hand, it won't tell you *exactly* where the book stopped making sense
and you started determinedly sawing logs. Guess we can't have everything.

I'm not discounting people such as Debby (see previous message on this
list). But in my estimation, there are too many variables to make *any*
research project in this area valid. If you will forgive the awful pun,
there's no way to do a double-blind study -- too much is known about the
subjects by too many people (the subjects can't be anonymized or randomized)
and, in any event, there will be too few participants to make what I
consider a decent statistical sample.

I'll go farther: I am of the opinion that very little truly scientifically
valid research can be done on blind people -- yes, even by our Jernigan
Institute.

It's like the late physicist Ernest Rutherford said: "the only thing one can
conclude from research in the social sciences is: `some do; some don't.`'".
IMO this goes for physical research also.

That's not to say that some interesting research hasn't been done -- for
example, the research linking the visual cortex with Braille reading. But
eight or ten subjects? C'mon!

Mike Freeman

-----Original Message-----
From: nfbwatlk-bounces at nfbnet.org [mailto:nfbwatlk-bounces at nfbnet.org] On
Behalf Of Mary Ellen
Sent: Sunday, October 02, 2011 1:10 AM
To: 'NFB of Washington Talk Mailing List'
Subject: Re: [nfbwatlk] FW: [Nfbnet-master-list] Fwd: Vanda Sleep Study

Do blind people have a higher likelihood of sleep disorders than sighted
people?  I don't know; on some level, researchers estimate that three
fourths of all North Americans have difficulties with the amount and quality
of their sleep at some time during their lives.  I certainly know some blind
people who have chronic sleep difficulty, and it's a major cause of
frustration, not to say additional health problems.

I'm reluctant to get into a discussion of pharmaceutical versus behavioral
treatments for disturbed sleep.  This list isn't the place for it.  Is the
difficulty blind people have due to the way we do or don't process light?
Possibly.  Could it also be that those people, blind or sighted, who don't
have a job or a regular schedule and who don't exercise are more likely to
sleep badly?  Probably.  Then there are people like me who go to sleep with
a book playing through headphones and wake up periodically in the night to
search in frustration for the place where I dropped off to sleep.  I
guarantee that's a sleep disruption, self inflicted by myself on myself.

-----Original Message-----
From: nfbwatlk-bounces at nfbnet.org [mailto:nfbwatlk-bounces at nfbnet.org] On
Behalf Of Mike Freeman
Sent: October 1, 2011 2:38 PM
To: nfbwatlk at nfbnet.org
Subject: [nfbwatlk] FW: [Nfbnet-master-list] Fwd: Vanda Sleep Study

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!
(grin)

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
criteria. 

Your efforts are sincerely appreciated. Thank you for your ongoing support.

Sincerely,

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.

Announcement:
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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