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NSF has not included DSPD on their website!
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There is a drop-down list near the top of the National Sleep Foundation (NSF) home page
with various sleep disorders. But Delayed Sleep Phase Disorder (DSPD)
is not on the list. Clicking on the items in this list takes you to a
page on the selected disorder. So we'd need a page (or several) on DSPD,
and perhaps other CRSDs.
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There is a separate page (actually 2 linked pages) also listing sleep disorders, at www.sleepfoundation.org/articles/sleep-disorders. Here too Delayed Sleep Phase Disorder is not on the list.
We have asked the NSF to rectify these changes on several occasions, but
they have not responded.
Our recent email campaign got a harmful statement on Non-24 changed
Recently the National Sleep Foundation (NSF) created a new set of web pages for Non-24-Hour Sleep Wake Disorder (Non-24) at
non24.sleepfoundation.org. We had several criticisms of these pages, which we wrote up in our original letter, which you can view
here. One statement was particularly harmful and offensive, as well as completely incorrect.
Thanks to your emails to them,
NSF has changed the most objectionable statement to our satisfaction,
and added a link to our website.
However, they have not yet made the other modifications we asked for. And they still do not list DSPD at all. That's why we're urging you again to write them.
Please Write the NSF!
Please write the National Sleep Foundation (again, if you've written
already!) to add DSPD, and to underscore your concerns about the other
issues. You can write Kristin Jones at
kjones@sleepfoundation.org.
She has promised to forward emails to the people with authority. If
enough people are upset enough, we will get action. And please copy
csd-n-news@csd-n.org, so we get an idea of how many people wrote.
A sample email appears below. You may use it all, or just the parts you
prefer. It may be more persuasive if you add a personal sentence or two
at the top. But most important is to send something. Detailed
instructions appear below, in case these are helpful.
Sample Email
Send to: kjones@sleepfoundation.org
CC: csd-n-news@csd-n.org
Subject: Please Add DSPD to the NSF Website
Delayed Sleep Phase Disorder (DSPD) still does not appear in the
dropdown list of disorders on your home page, nor anywhere on your
Disorders pages (
www.sleepfoundation.org/articles/sleep-disorders). I appreciate that you've added Non-24, but there is still nothing on DSPD.
Delayed Sleep Phase Disorder is estimated to affect 500,000 American
adults [1]. The adolescent version, which can resolve during early
adulthood, has been estimated to affect as many as 8% of teens [2].
Compare this with estimates of Non-24 prevalence of perhaps 90,000, and
narcolepsy prevalence of about 150,000, both of which are documented on
the NSF web site, and you see that not including DSPD is a major
omission. People come to NSF looking for guidance and information, and
covering these major disorders is important for your credibility as well
as for us sufferers to obtain treatment and accommodation and even
respect.
"People with N24HSWD have circadian rhythms that are not
synchronized with the 24-hour day-night cycle, either through a failure
of light to reach the SCN, as in total blindness, or due to
inappropriate exposure to light-dark cycles, as with some sighted
people". This again perpetuates the misinformation that Non-24 in
sighted people is brought on and maintained by their own choices. You
finally removed that misinformation on the Depression page. Please
replace the final phrase above with "or due to various other reasons in sighted people."
Thank you for your continued help on this.
Sincerely,
<your name>
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Step-by-Step Instructions for Sending
You can try clicking on the
this link. Depending on your software, that may automatically do the next four steps. If not:
Open a blank email as you normally would, to send to a friend.
Copy the To address (
kjones@sleepfoundation.org) and paste it into the To line of your blank email.
Copy the Cc address (
csd-n-news@csd-n.org) and paste it into the Cc line.
Copy the Subject (
Please Add DSPD to the NSF Website) and paste it into the Subject line.
Copy the message body (above) and paste it into the body of your email.
Type your name at the bottom, in place of <your name>.
Click Send.
