[vendtalk] Sleep Deprivation

Peter Donahue pdonahue1 at sbcglobal.net
Tue Jun 15 19:12:55 UTC 2010

Hello Keevin and everyone,

    As we well know health professionals often assume that our presumed 
inabilities can be a attributed to our blindness. Dr. Jernigan shared with 
those in attendance at the 1975 Banquet an article from The National 
Inquirer in which scientists presupposed that our inability to have sex was 
due to not being able to see light. Like the researchers quoted in the 
National Inquirer article these folks are assuming that our sleep-wake 
patterns are irregular due to our not being able to see light.

    What disturbs me is that so far as I know they have not performed 
standard sleep studies on their blind research subjects who may have common 
sleep disorders. Hence the assumptions are falsely made that blindness is 
the cause of an irregular sleep-wake cycle and not Sleep Apnea, Insomnia, or 
a host of other sleep disorders common to all persons blind or sighted. This 
has resulted in needless suffering and serious difficulties experienced by 
some blind individuals due to the failure to properly diagnose sleep 
disorders believing that blindness alone is the root cause of irregular 
sleep. I am all too painfully aware of this fact as I am one such person. 

Peter Donahue

----- Original Message ----- 
From: "Kevan Worley" <kevanworley at blindmerchants.org>
To: "Vendtalk Mailing List" <vendtalk at nfbnet.org>; 
<Christian.Lavedan at vandapharma.com>
Sent: Tuesday, June 15, 2010 11:03 AM
Subject: [vendtalk] Sleep Deprivation


Yes, I saw this on the National Convention agenda. I am totally blind and I
grew up with hundreds of totally blind brothers and sisters. It is my notion
that totally blind people have no problem sleeping. Perhaps I am wrong. And
as you can see, I am posting this e-mail exchange to our blind vendor list.
There may very well be folks that are interested in your project. If so, I
would urge them to be in touch with you. Given the hypothesis, you may very
well receive e-mails at 2 or 3 am. :-) :-) :-)

Thank you for your interest in the National Federation of the Blind and the
National Association of Blind Merchants.

Nocturnally yours.


From: Christian Lavedan [mailto:Christian.Lavedan at vandapharma.com]
Sent: Tuesday, June 15, 2010 8:43 AM
To: kevanworley at blindmerchants.org
Subject: Research on Blindness and Sleep - NFB Blind Merchants

Dear Kevan Worley

I am contacting you because I believe that some members of the National
Association of Blind Merchants of the NFB may be interested in learning
about our effort to better understand sleep problems in people who are
totally blind.

I am from Vanda Pharmaceuticals, a pharmaceutical company located in
Rockville, MD. Vanda is developing a new investigational medicine to treat
the complaint of the sleep/wake cycle experienced by some individuals with
no light perception. For this reason, we are interested in learning more
about people who have no light perception blindness and the problems they
face with sleep or wakefulness. Below is an announcement about upcoming
sleep studies that some totally blind individuals may be interested in.

We gladly welcome the opportunity to talk to you about our plans and to
learn more about you and your organization. We also would appreciate if you
could pass this information along to other individuals in your organization
and your community who may be interested by this research.


C. Lavedan

Announcing Upcoming Sleep Studies in Totally Blind Individuals

Are you blind with no light perception?

Do you have problems sleeping or trouble with daytime sleepiness?

Non-24-hour sleep wake disorder occurs in some individuals who are totally
blind and lack the light sensitivity necessary to reset the "body clock".
This can lead to problems with sleep and/or daytime excessive sleepiness.

You can help researchers understand non-24-hour sleep wake disorder by
taking a brief phone survey. In addition, you will have the opportunity to
be informed of upcoming clinical studies recruiting in your area.

Survey Participants Need to:

*        be over 18 years of age

*        be blind with no light perception

*        have sleep problems and/or daytime sleepiness

Collected information will be kept strictly confidential.

For each completed survey, a donation of $25 up to $50,000 will be made to
the National Federation of the Blind.

If you want to participate in the survey, please call toll-free
1-877-708-1931, Monday-Friday between 9:00 AM and 5:00 PM ET

Christian Lavedan, Ph.D.

Head of Discovery

Vanda Pharmaceuticals

9605 Medical Center Drive Suite 300

Rockville, MD 20850, USA

Tel: 240.599.4500

Fax: 301.294.1900

 <http://www.vandapharma.com/> www.vandapharma.com


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