[Nfbc-info] non-24

Sat Apr 19 10:29:58 UTC 2014

Hi,
When I first was told by a doctor, years and years ago, that my sleep issue was because of blindness, I pooh-poohed it. I tried to explain to him that there wasn't any quality that all blind people automatically have in common except that they are blind. To blame my sleep disorder on blindness, to me, said that *all* blind people have sleep issues and I told him I knew, and was related to, other blind people who did not have the problem I had. 

By the time Vanda was doing their thing, I was convinced that I, in particular, had non-24, but then they disqualified me from the study because I am, as a friend puts it, "fluffy." So now I am thinking that blind, thin people were the subjects of the study, which is not, in my thinking, representative of all blind people. So I do find some issues about the whole thing not totally to my liking. 

However, I may be one of the blind, "fluffy" ones who presents the issue to a sleep study center in the near future, because, if that medication really helps, I might want to try it, blind or not. 

It is a bummer that non-24 can have such a negative impact on our lives, but I know, from experience, that it can. Some days at work, I have to break out the bottle of 5-hour energy in order to get through my 8 hours. 

So, I think there are definitely pros and cons of the whole subject, but I sure hope that anyone who can benefit from the medication will have the opportunity to do so. And if the med does improve the lives of many people who happen to be blind, then that is great! 

Quite often, totally blind people are the last to be included in society, or have their needs met, so finally someone has listened to a condition that many of us have.
Thanks, and
Happy Easter!
Lauren

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

-----Original Message-----
From: Nfbc-info [mailto:nfbc-info-bounces at nfbnet.org] On Behalf Of jandk5 at cox.net
Sent: Friday, April 18, 2014 8:44 PM
To: nfbc-info at nfbnet.org
Cc: nfbc-info-request at nfbnet.org
Subject: Re: [Nfbc-info] non-24

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&current_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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> lindme
> rchants.org
> 
> 
> 
> 
> ------------------------------
> 
> 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
> >> 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:
> >> http://nfbnet.org/mailman/options/nfbc-info_nfbnet.org/amber%40ambe
> >> rboggs.com
> > _______________________________________________
> > 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:
> > http://nfbnet.org/mailman/options/nfbc-info_nfbnet.org/nfbfrida%40gm
> > ail.com
> 
> 
> 
> 
> ------------------------------
> 
> 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:
> http://nfbnet.org/mailman/options/nfbc-info_nfbnet.org/kevanworley%40b
> lindme
> rchants.org
> 
> 
> _______________________________________________
> 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:
> http://nfbnet.org/mailman/options/nfbc-info_nfbnet.org/rcubfank%40sbcg
> lobal.net
> 
> 
> 
> 
> ------------------------------
> 
> 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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> 
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> ******************************************

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