DearVinney,

You must be totally blind to enter into that 
study. Also the study that I am in, one has to 
also be completely totally blind.

Even just a little light perception will not 
allow you to be in the study, according to what 
I've been told from both organizations.

Pat Ferguson

At 08:41 AM 8/7/2012, you wrote:
>Hi Angel,
>They wouldn't let me in the study because they 
>said I had too much light percption. Now, when I 
>go into a room, I can't see any lights at night, 
>and in the day I just see a little sun.  I have 
>had this problem which is only getting worse, for at least 11 years.
>Vinny
>----- Original Message ----- From: "Angel" <[log in to unmask]>
>To: <[log in to unmask]>
>Sent: Tuesday, August 07, 2012 6:12 AM
>Subject: Re: [The Conduit] Blind people more 
>likely to suffer from light-relatedsleep disorder
>
>
>>I am involved in the study now.  I trust my 
>>involvement will assist drug companies to find 
>>an answer for this plaguing problem for 
>>us.  Dear Doris might want to research how to 
>>become involved as well.  As the study  of this drug is also being done in
>>Germany.
>>----- Original Message ----- From: "Vinny Samarco" <[log in to unmask]>
>>To: <[log in to unmask]>
>>Sent: Tuesday, August 07, 2012 1:22 AM
>>Subject: Fw: [The Conduit] Blind people more 
>>likely to suffer from light-relatedsleep disorder
>>
>>
>>Hi Everyone,
>>I know this may be somewhat off topic, however, If any of you suffer from
>>this as I do, maybe you will be glad to see the clarity of this explanation.
>>God bless.
>>Vinny
>>----- Original Message ----- From: "Mary Lorefice" <[log in to unmask]>
>>To: "The Conduit" <[log in to unmask]>
>>Sent: Monday, August 06, 2012 6:41 PM
>>Subject: [The Conduit] Blind people more likely to suffer from
>>light-relatedsleep disorder
>>
>>
>>Blind people more likely to suffer from light-related sleep disorder
>>Published on Monday August 06, 2012
>>Alyssa A. Botelho
>>The Washington Post
>>
>>WASHINGTON-Melanie Brunson, who has been blind since birth, suddenly awoke
>>and found herself standing at 15th and K streets in Northwest Washington.
>>
>>She had stopped at the corner on her way home from work to await a safe time
>>to cross and had dozed off. Even on awakening, she was so groggy she
>>couldn't
>>focus well enough to hear passing cars and judge when it was safe to cross.
>>The incident was a startling reminder of the sleep problems that had plagued
>>her since birth.
>>
>>"Who knows how long I had been standing there," she said. "I realized then
>>that my safety was in jeopardy, and I began searching for remedies with a
>>vengeance."
>>
>>But years after that 2005 traffic scare and many subsequent visits to
>>doctors and sleep clinics, Brunson still lies awake in bed night after night
>>and then is desperately sleepy during the day.
>>
>>Although doctors have not definitively identified her disorder, researchers
>>believe she suffers from non-24-hour sleep-wake disorder, or "non-24." The
>>chronic and little-known sleep condition is characterized by a body clock
>>that is not aligned with a 24-hour day.
>>
>>Though non-24 can affect those with normal vision, it is especially
>>prevalent among blind people who cannot sense light, the strongest
>>environmental signal that synchronizes the brain's sleep-wake pattern to the
>>24-hour cycle of the Earth day.
>>
>>According to the preliminary results of an ongoing clinical trial that were
>>released earlier this summer, of the estimated 65,000 to 95,000 blind people
>>in the United States who have sleep complaints, up to 70 per cent might
>>suffer from non-24.
>>
>>"It is a devastating condition ... because you are trying to keep a job and
>>a social life while your body's internal clock is competing against the
>>24-hour outside world," said Harvard neuroscientist Steven Lockley, who is
>>one of the principal investigators of the clinical trial.
>>
>>It was Lockley who told Brunson about non-24 at a meeting of the American
>>Council of the Blind (ACB).
>>
>>"My boss at the time, who had been hearing about my sleep problems for
>>years, dragged me by the arm to Dr. Lockley and demanded, 'Fix her!'"
>>Brunson said.
>>
>>With that introduction, Brunson, who is now the executive director of the
>>ACB, enrolled as a participant in one of Lockley's early studies on sleep
>>disorders of the blind. After working with his team, she learned that her
>>body clock ran on a cycle longer than 24 hours.
>>
>>The human body clock consists of an intricate network of chemical and
>>electrical signals controlled by two rice-grain-size structures deep in the
>>brain. Most people's internal clock runs slightly longer than 24 hours.
>>However, among sighted people, the clock is reset each day by light-sensing
>>cells in the eyes that signal to the brain that it is daytime.
>>
>>For the blind, this reset mechanism fails. The resulting symptoms are
>>similar to those experienced by sighted people who chronically disrupt their
>>light cycle by shift work or travel across time zones.
>>
>>Here is how it works: In theory, a blind person with an internal body clock
>>of 24.5 hours may feel ready to fall asleep at 10:30 p.m. on Monday but not
>>be able to fall asleep until 11 p.m. on Tuesday. This cycle is unrelenting,
>>making those affected want to fall asleep later and later each day.
>>
>>For Brunson, the waves of disturbed sleep typically occur in three- or
>>four-week episodes of insomnia that cause her to wake up between 1 and 2 in
>>the morning, regardless of when she goes to bed.
>>
>>Jack Mendez, a 35-year-old information technology professional who learned
>>last year that he has non-24, often finds himself awaking between 2 a.m. and
>>5:30 a.m., unable to fall back to sleep. On the evening that he spoke with a
>>Post reporter, he had been awake since 3 in the morning.
>>
>>Some who suffer from non-24 have found limited relief through treatment with
>>synthetic versions of the hormone melatonin, which works to drag forward the
>>body clock's reset time by providing a chemical pulse to the brain that
>>signals nighttime.
>>
>>Synthetic doses of melatonin help alleviate Brunson's non-24, but the
>>treatment does not work at all for Mendez.
>>
>>"It gives me nightmares and cold sweats, and I feel hung over the next day,"
>>he said.
>>
>>Shuttled from doctor to doctor as a child, Mendez has been prescribed
>>everything from sleeping pills to psychotropic drugs. Thus far, he has found
>>no treatments that help. He praises his fiancée for her patience in
>>tolerating their often opposite sleeping schedules.
>>
>>There are no FDA-approved medications to treat non-24. However, the ongoing
>>clinical trial has advanced from screening participants for non-24 to
>>testing a candidate drug called tasimelteon. The drug, which is intended to
>>treat non-24 and other circadian rhythm sleep disorders, is being developed
>>by Washington, D.C.,-based Vanda Pharmaceuticals.
>>
>>Vanda scientists hope that tasimelteon, which has a similar molecular
>>structure to melatonin, will have superior beneficial effects. Synthetic
>>melatonin itself is classified as a dietary supplement.
>>
>>Northwestern University professor Phyllis Zee, a neuroscientist and sleep
>>specialist who was not involved in Vanda's research, said that tasimelteon's
>>long-term effects remain unclear, but at the very least the trial is
>>valuable in raising awareness about and creating a better understanding of
>>the condition.
>>
>>"Most physicians and blind patients are unfamiliar with non-24, and a
>>large-scale study of the totally blind is crucial in developing criteria for
>>diagnosis," she said.
>>
>>Although Brunson and Mendez both participated in the screening phase of the
>>tasimelteon trial, neither of them chose to take the drug because they were
>>wary of its impact on job performance and its interactions with other
>>medications.
>>
>>But Mendez, who is at the Louisiana Center for the Blind finishing a
>>nine-month training program that will help him travel and work more
>>independently, plans to rejoin the trial and try tasimelteon after his
>>course ends.
>>
>>"The training has helped me learn to think about blindness as just a
>>characteristic, not as a thing that consumes my life," he said. "Of course,
>>a good sleep helps with that thinking, too."
>>MaryL
>>
>>
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