[Nfbc-info] non-24
jandk5 at cox.net
jandk5 at cox.net
Sat Apr 19 03:44:21 UTC 2014
Hi,
I just want to put my two cents worth in regarding non24 sleep disorder. I am not saying that this condition doesn’t exist. Likewise it is good that Vanda consulted with the NFB and the ads are more positive about blind people. It is some of the best advertising we most likely could not afford. But that being said, after I saw all these ads on prime time I wondered what is going on here because prime time advertising is not cheap. Why would non24 have so many ads on the tv when the number of totally blind people is not that many and not all are affected by non24. So I did some research and discovered that this was a drug company and just as I thought they are pedaling a drug to treat this condition. I found this website that talks about non24
http://www.alternet.org/personal-health/under-radar-how-unbranded-drug-advertising-harms-consumers?paging=off¤t_page=1
The author states: “Developing "orphan drugs" that treat such a small part of the population (like the blind) they are not commercially viable is laudable. But orphan drugs are not usually accompanied by multi-million-dollar ad campaigns and slick websites. (Nor are important messages for the blind usually on the Web.) Is there something disingenuous going on? Under "Could You Have Non-24?" on the site, it says "The key symptoms of Non-24 are the inability to sleep or stay asleep and a powerful urge to sleep during the day" with no mention of blindness. A longer list on the site mentions waking up "groggy," being "less productive than usual at work or at school," relationships that "are strained," "sluggishness and forgetfulness," mood that is "affected" and frustration "because no one seems to understand what you're going through," and also doesn't mention blindness.
You don't have to be a cynic to wonder if the new disease — and the drug that will treat it if approved — is actually being marketed to the hundreds of millions of adults with sleep problems. When I called the phone number and asked the "health educator" if I could have Non-24 even though I am not blind, I was told "you don't have to be blind to have Non-24" though it is more common in blind people. When I asked if there was a pill I could take if I had symptoms, my educator said he was unable to answer that because, "I am not a doctor," and promised to send me more information.”
I do think this writer needs to catch up with the times as we blind people get a lot of our information on the web. But when it comes to non24 call me a skeptic. The ads are a bit contradictory on the one hand you are a really independent successful person but on the other hand you are groggy and need a nap in the afternoon and struggle to get by. How can you do a good job or how might this information impact a prospective employer?
Deanna Bates
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> Today's Topics:
>
> 1. Re: sorry for the missunderstanding (Kevan Worley)
> 2. Re: non24 (Frida Aizenman)
> 3. Re: sorry for the missunderstanding (Rob Kaiser)
> 4. NFB canes and tails fundraiser/thirty-one gifts
> (Lauren Merryfield)
> 5. SB1109 hearing next Tuesday and other information
> (Michael Hingson)
>
>
> ----------------------------------------------------------------------
>
> Message: 1
> Date: Thu, 17 Apr 2014 09:03:59 -0600
> From: Kevan Worley <kevanworley at blindmerchants.org>
> To: 'NFB of California List' <nfbc-info at nfbnet.org>
> Subject: Re: [Nfbc-info] sorry for the missunderstanding
> Message-ID: <03a001cf5a4e$439c0100$cad40300$@blindmerchants.org>
> Content-Type: text/plain; charset="us-ascii"
>
> Greetings Rob and colleagues,
>
> It was not an unreasonable misunderstanding. It is reasonable to have qualms
> about the way material is sometimes presented about blind folks. I knew that
> the company had done extensive research on the matter. I knew that they had
> interviewed our Federation folks, and have conducted focus groups at
> national conventions. Still, I have found some of their advertisements at
> least somewhat troubling. For the most part I don't think this is their
> fault. As I reflect on it, I think some of it is my own insecurity about
> what is said concerning blindness. I happen not to believe that non-24 hour
> sleep disorder is the big deal they proclaim it to be. That said, my
> understanding is that their research is sound. I have observed some blind
> folks who struggle mightily with sleep rhythms. On the other hand, I know
> plenty of sighted insomniacs. I suppose it is difficult to sort myth and
> misconception from reality. I also can be over sensitive when it comes to
> the way folks who share my physical characteristic of blindness are
> portrayed. If 45 percent of human resource managers at fortune 500 companies
> indicate their reluctance to hire blind folks, and list numerous reasons for
> their reluctance, most of which are based on misconceptions, then I
> certainly do not want to add an additional reason. In other words, now they
> might think "well gosh, not only do we have to spend extra on technology,
> get someone to lead her to the bathroom, deal with the fact that the blind
> take extra sick days, help them cut their meat at a luncheon, teach them
> their way around the building. But, now we have to worry that they might
> drift off and sleep half the day away." Anyway, it occurs to me that I
> should not be so over sensitive about every little thing that is said about
> blindness, particularly if that thing might actually be true and may
> actually help some folks.
>
> Just some random thoughts from me. I have enjoyed spending quite a bit of
> time in California over the past few months. And I have had little trouble
> staying awake.
>
> -----Original Message-----
> From: Nfbc-info [mailto:nfbc-info-bounces at nfbnet.org] On Behalf Of Rob
> Kaiser
> Sent: Wednesday, April 16, 2014 10:09 PM
> To: ;
> Subject: [Nfbc-info] sorry for the missunderstanding
>
> Sorry for the misunderstanding about Non24. I should have done more research
> about this before I sturred up a can of worms. Thank you for all of the
> responses on both listserves.
>
> I goofed again.
>
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>
>
>
> ------------------------------
>
> Message: 2
> Date: Thu, 17 Apr 2014 11:04:05 -0700
> From: Frida Aizenman <nfbfrida at gmail.com>
> To: NFB of California List <nfbc-info at nfbnet.org>
> Subject: Re: [Nfbc-info] non24
> Message-ID: <53501795.9010901 at gmail.com>
> Content-Type: text/plain; charset=UTF-8; format=flowed
>
> This is Frida,
> Good morning.
> I just want to point out that, the ads can also be heard here in
> Northern Nevada, and I believe, correct me if I am wrong, that Amber is
> correct on what she said. See below:
> On 4/16/2014 2:39 PM, Amber Boggs wrote:
> > Rob this is actually a real issue. Many blind people have problems regulating their circadian rhythms. Even people who can see some light have this issue. Not everyone has it but it is very real. It has to do with the melatonin production in the brain. I could go into great detail about it if I had the time :-) I work with it on a natural level with people but Vandor pharmaceuticals has a pharmaceutical approach to it. They did focus groups and presented at the national conventions and such.
> >
> > Sent from my iPhone
> >
> >> On Apr 16, 2014, at 1:21 PM, "Rob Kaiser" <rcubfank at sbcglobal.net> wrote:
> >>
> >> The adds for Non24 are back on again. They started on the radio. Now, they are on TV
> >>
> >> This is a product that where supposidly blind people have dificulty sleeping because they are totally blind.
> >>
> >> ObviObviously, this isn?t true. This product needs to be taken off the market, or, at least these adds need to stop running.
> >>
> >> Who do we write to to get this started?
> >>
> >> _______________________________________________
> >> Nfbc-info mailing list
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> >> http://nfbnet.org/mailman/options/nfbc-info_nfbnet.org/amber%40amberboggs.com
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>
>
>
> ------------------------------
>
> Message: 3
> Date: Thu, 17 Apr 2014 13:14:19 -0700
> From: "Rob Kaiser" <rcubfank at sbcglobal.net>
> To: "NFB of California List" <nfbc-info at nfbnet.org>
> Subject: Re: [Nfbc-info] sorry for the missunderstanding
> Message-ID: <3703FC7C7AB14FBD9881BD252DE6CCFA at laura>
> Content-Type: text/plain; format=flowed; charset="iso-8859-1";
> reply-type=original
>
> This is one of the reasons why I sent the email out yesterday.
>
>
>
> -----Original Message-----
> From: Kevan Worley
> Sent: Thursday, April 17, 2014 8:03 AM
> To: 'NFB of California List'
> Subject: Re: [Nfbc-info] sorry for the missunderstanding
>
> Greetings Rob and colleagues,
>
> It was not an unreasonable misunderstanding. It is reasonable to have qualms
> about the way material is sometimes presented about blind folks. I knew that
> the company had done extensive research on the matter. I knew that they had
> interviewed our Federation folks, and have conducted focus groups at
> national conventions. Still, I have found some of their advertisements at
> least somewhat troubling. For the most part I don't think this is their
> fault. As I reflect on it, I think some of it is my own insecurity about
> what is said concerning blindness. I happen not to believe that non-24 hour
> sleep disorder is the big deal they proclaim it to be. That said, my
> understanding is that their research is sound. I have observed some blind
> folks who struggle mightily with sleep rhythms. On the other hand, I know
> plenty of sighted insomniacs. I suppose it is difficult to sort myth and
> misconception from reality. I also can be over sensitive when it comes to
> the way folks who share my physical characteristic of blindness are
> portrayed. If 45 percent of human resource managers at fortune 500 companies
> indicate their reluctance to hire blind folks, and list numerous reasons for
> their reluctance, most of which are based on misconceptions, then I
> certainly do not want to add an additional reason. In other words, now they
> might think "well gosh, not only do we have to spend extra on technology,
> get someone to lead her to the bathroom, deal with the fact that the blind
> take extra sick days, help them cut their meat at a luncheon, teach them
> their way around the building. But, now we have to worry that they might
> drift off and sleep half the day away." Anyway, it occurs to me that I
> should not be so over sensitive about every little thing that is said about
> blindness, particularly if that thing might actually be true and may
> actually help some folks.
>
> Just some random thoughts from me. I have enjoyed spending quite a bit of
> time in California over the past few months. And I have had little trouble
> staying awake.
>
> -----Original Message-----
> From: Nfbc-info [mailto:nfbc-info-bounces at nfbnet.org] On Behalf Of Rob
> Kaiser
> Sent: Wednesday, April 16, 2014 10:09 PM
> To: ;
> Subject: [Nfbc-info] sorry for the missunderstanding
>
> Sorry for the misunderstanding about Non24. I should have done more research
> about this before I sturred up a can of worms. Thank you for all of the
> responses on both listserves.
>
> I goofed again.
>
> _______________________________________________
> Nfbc-info mailing list
> Nfbc-info at nfbnet.org
> http://nfbnet.org/mailman/listinfo/nfbc-info_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Nfbc-info:
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> rchants.org
>
>
> _______________________________________________
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> Nfbc-info at nfbnet.org
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> To unsubscribe, change your list options or get your account info for
> Nfbc-info:
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>
>
>
>
> ------------------------------
>
> Message: 4
> Date: Thu, 17 Apr 2014 21:19:38 -0700
> From: "Lauren Merryfield" <lauren at catlines.com>
> To: "'NFB of California List'" <nfbc-info at nfbnet.org>
> Subject: [Nfbc-info] NFB canes and tails fundraiser/thirty-one gifts
> Message-ID: <002601cf5abd$6bef5700$43ce0500$@catlines.com>
> Content-Type: text/plain; charset="us-ascii"
>
> Hi,
>
> Just a friendly reminder:Time is a-wasting! We are now in the midst of our
> Thirty-One Gifts fundraiser for the Canes and Tails chapter. Please remember
> to shop as soon as possible, before our spring purses, organizers and
> accessories sell out!
>
> Thanks
>
> Lauren Merryfield
>
>
>
> advice from my cats: "meow when you feel like it."
>
> "There are two means of refuge from the miseries of life: music and cats." ~
>
>
> Albert Schweitzer
>
> curious about Thirty-One? New spring lineup now available:
>
> www.LettingTheCatOutOfTheBag.com
>
> Purchase my new book:there's more than one way to be okay at:
>
> www.TheresMoreThanOneWay.com
>
> Cat lovers, please visit me at:
>
> www.catlines.com
>
>
>
>
>
> ------------------------------
>
> Message: 5
> Date: Thu, 17 Apr 2014 21:58:47 -0700
> From: "Michael Hingson" <info at michaelhingson.com>
> To: "'NFB of California List'" <nfbc-info at nfbnet.org>,
> <seminar at nfbcal.org>
> Cc: "'Lewis, Anil'" <ALewis at nfb.org>, "'Sloan, Rose'"
> <rsloan at nfb.org>, "'Pare, John'" <JPare at nfb.org>
> Subject: [Nfbc-info] SB1109 hearing next Tuesday and other information
> Message-ID: <02a301cf5ac2$e63ee2f0$b2bca8d0$@com>
> Content-Type: text/plain; charset="us-ascii"
>
> Greetings everyone,
>
>
>
> As you know, for several years we have been fighting to secure fair wages
> for all blind people by eliminating provisions in the law that allow
> sheltered workshops and other organizations to pay blind workers and other
> workers with disabilities less than the minimum wage. On the national level
> we have been making considerable progress on this. Now, we have an
> opportunity here in California to affect change on the local and state
> level.
>
>
>
> At present, the law permits organizations that enter into contracts with the
> state of California to pay workers with disabilities less than the minimum
> wage. Sheltered workshops and some agencies have been very happy with this
> current arrangement and, of course, would not like to see a change.
> However, earlier this year Senator Ben Hueso of the 40th California
> senatorial district introduced SB 1109 which if passed will change the law
> and eliminate wage discrimination for all persons with disabilities. This
> is an exciting opportunity for us to affect real change in California
> concerning the concept of minimum wage.
>
>
>
> Briefly, SB 1109 calls for a change in the law which would mandate that any
> agency or organization wishing to do business with the state of California
> must pay all employees the minimum wage prescribed by law. I am not going
> to include the text of the law here as there is still a possibility there
> may be some small amendments before Tuesday. This bill makes it clear that
> under the revised law no organization or agency can enter into any kind of
> contract with the state of California if it pays any of its workers a sub
> minimum wage.
>
>
>
> SB 1109 is being heard next Tuesday morning at 9:30 AM by the Government
> organization Committee at the state capital in room 4203. I'm writing to
> ask you to do two things concerning this bill in order to help its passage.
> First, if there is any way that you can do so we need you to come to
> Sacramento to be at the hearing to show support for the bill. If you would
> be willing to testify this would be a plus. You do not need to arrange or
> even prepare any kind of advanced testimony. Your testimony could be a
> simple as "my name is... And I am here to tell you that I think it is wrong
> that any organization contracting with the state of California can pay me or
> any person with a disability a subminimum wage while every person without a
> disability gets a guaranteed minimum wage ". Of course, this is just one
> example of what you might say. What we need are large numbers of people to
> attend the hearing. The NFB of California does have some funding to help
> with expenses for people who can come to Sacramento. I realize that it will
> be difficult for many people from the South to be able to come, but if any
> of you can make the hearing it would be great. We do need lots of folks
> from the north, of course. If you are interested in attending the hearing
> please email me expressing your interest. Please include contact
> information such as name, phone number, and email address. I will pass your
> information to President Willows. Again, please express your interest by
> sending me an email. By the way, we understand that the opposition will be
> bringing many people including individuals with developmental disabilities
> who will say that passage of this bill would eliminate jobs for disabled
> persons throughout the state. The opposition will be working hard to bring
> lots of people to the hearing.
>
>
>
> Second, we need everyone to send letters of support for SB 1109 to Senator
> Correa (Chair, Government organization Committee). Send emails to the
> senator through his committee consultant, Paul Donahue at
> Paul.Donahue at sen.ca.gov. Here is sample wording for you to use.
>
>
>
> " As a person with a disability, I support SB 1109 because I feel that
> paying people with disabilities subminimum wages is immoral, discriminatory
> and unfair. I know that if state contracts are only awarded to entities that
> pay all workers at least the minimum wage, then businesses that utilize
> 14(c) certificates will likely change their business models so that they can
> obtain state contracts. Just as President Obama's recent Executive Order
> will ensure that people with disabilities employed under federal government
> contracts that provide services and concessions will be paid $10.10 an hour,
> it is encouraging that state contracts in California will also ensure people
> with disabilities the pay equality we deserve.
>
>
>
> The biggest obstacle facing people with disabilities is that we are often
> held to lower expectations than our non-disabled peers. Legally allowing
> entities to pay us subminimum wages just reinforces this fallible belief.
> Passage of this bill will be a great step forward in ensuring that people
> with disabilities are paid fair wages.
>
>
>
> > Thank you for your consideration of SB 1109. I hope you will fight for
> equality for people with disabilities by helping to pass this important
> legislation..
>
>
>
> Sincerely,"
>
>
>
> it would also be helpful to email Senator Hueso expressing your support for
> his bill. Here is some sample wording for a letter to Senator Hueso.
>
>
>
> The Honorable Ben Hueso
>
> State Capitol, Room 2054
>
> Sacramento, CA 95814
>
>
>
> Dear Senator Hueso:
>
>
>
> Thank you for introducing S.B. 1109 State contracts: integrated employment:
> persons with disabilities.
>
>
>
> As a person with a disability, I support this bill because I feel that
> paying people with disabilities subminimum wages is immoral, discriminatory
> and unfair. I know that if state contracts are only awarded to entities that
> pay all workers at least the minimum wage, then businesses that utilize
> 14(c) certificates will likely change their business models so that they can
> obtain state contracts. Just as President Obama's recent Executive Order
> will ensure that people with disabilities employed under federal government
> contracts that provide services and concessions will be paid $10.10 an hour,
> it is encouraging that state contracts in California will also ensure people
> with disabilities the pay equality we deserve.
>
>
>
> The biggest obstacle facing people with disabilities is that we are often
> held to lower expectations than our non-disabled peers. Legally allowing
> entities to pay us subminimum wages just reinforces this fallible belief.
> Passage of this bill will be a great step forward in ensuring that people
> with disabilities are paid fair wages.
>
>
>
> Thank you for fighting for equality for people with disabilities.
>
>
>
> Sincerely,
>
>
>
> if you have any questions or want to talk about any issues concerning the
> legislation and what I've asked you to do please feel free to email me at
> mike at michaelhingson.com or phone me at (415) 827-4084. Thanks very much for
> helping us to work with Senator Hueso to pass this legislation. I hope
> everyone can make it to Sacramento. Wouldn't that be a great site? I look
> forward to hearing from many of you as you make plans to come help with this
> effort. I know that you did not have a lot of notice, but neither did any
> of us. Thanks again.
>
>
>
>
>
> Best,
>
>
>
>
>
> Michael Hingson
>
>
>
>
>
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