Thursday, September 29, 2016

Re: [acb-l] My Retina Tracker Crowdsources People with Visual Impairments

You would think that greater numbers would make a difference. But
take a look at our political landscape. We, the working class
Americans far outnumber the 1% who comprise the Ruling Class. And
yet, we do not live in a democracy. We live in an Oligarchy. And
that government of the small minority has created an Empire, the likes
of which we've never seen on this tired old planet. So numbers do not
equate to control. I would suggest two basic ingredients in our
struggle toward full membership in our world. Commitment and money.
In order to be committed, we need a vision...a plan. And to
underwrite the Plan, we need financial support. In fact, we can
broaden out how we look at money. We can see that it is not the
actual gold, itself, but the power it brings. Take a look at our
current Run for the Roses, the presidential race. Donald Trump has
positioned himself so that he is receiving millions of dollars of free
advertising, without spending a dime of his own money. What Trump is
doing is to piggy back on the great wealth of the Mass Media. It is
the Media's money that is providing Trump with a broader platform than
he could ever buy with his own money. Despite his popularity, Bernie
Sanders never found a way to link with the Mass Media, and despite
raising amazing amounts of cash, he could not begin to buy enough
space to compete with Hillary Clinton. It did not matter whether
Sanders had a broader base of followers than did Clinton. She had the
power of dollars behind her. She had the Democratic Central
Committee, along with large corporate dollars. Simply put, Sanders
was outmaneuvered.
The question for us is, how do we either build such a power base, or
connect with one that already exists? To do that, we don't need more
blind bodies, we need thoughtful planning. We need to step outside
our little blind box and see what other winners are doing to gain
positive results.
Just one personal word of caution. If our ultimate goal is to gain a
toehold and share in the power of this current American Corporate
Empire, then I am not interested. The capitalist system is not
serving the needs of blind men and women, nor the needs of the
majority of working class Americans, able bodied or disabled, young or
old, White or Colored. My vision is for a broad based government, a
true democracy, not an Oligarchy or a military dictatorship, but a
People's government where each of us is able to participate to the
limit of our ability.

Carl Jarvis


On 9/28/16, Karen Rose <rosekm@earthlink.net> wrote:
> As for an organization fighting blindness that I have always thought that we
> need more not few were blind people so that we can have more political
> effect.
>
> Sent from my iPhone
>
>> On Sep 28, 2016, at 12:12 PM, Chris Coulter via acb-l <acb-l@acblists.org>
>> wrote:
>>
>> You're right, Carl. I suffer from shortness myself and there is less belly
>> fat for me to suffer from now, but I remember what that felt like. I guess
>> some blind people suffer from or with glaucoma, but my blindness is just
>> eyes that can't see and they only hurt if I get something in them or I get
>> too tired.
>>
>> Chris
>>> On Sep 28, 2016, at 11:03 AM, Carl Jarvis via acb-l <acb-l@acblists.org>
>>> wrote:
>>>
>>> "Suffering from Blindness..." Well, are we also suffering from Life?
>>> Having been a blind man for 51 of my 81 years, I neither embrace, nor
>>> suffer blindness. I'm simply blind. Suffers. What a word. I have a
>>> friend who suffers from shortness. Another who, at 7 feet 3 inches,
>>> suffers from tallness. In my older years I do believe that I'm
>>> suffering from Belly Fat.
>>>
>>> Carl Jarvis
>>>
>>>
>>>
>>>> On 9/28/16, Carly Mihalakis via acb-l <acb-l@acblists.org> wrote:
>>>> Good morning, my Lisa,
>>>>
>>>> You might not need to be so sensitive. While so-called blind
>>>> organizations, in their work, address these types of ebbing and
>>>> flowing of our blind identity, the FFB, I gather, is into medical
>>>> research, looking for a means of fighting blindness, no, not
>>>> necessarily for us but lately, I have really begun to embrace ocular
>>>> darkness, but that's just me.
>>>> Car I wonder if they are aware of just how insensitive their words
>>>> can feel to those of us who are blind, and will always be blind.
>>>>
>>>>> Thanks
>>>>> Lisa
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>>> On Jul 14, 2015, at 8:38 PM, Karen Rose via acb-l
>>>>>> <acb-l@acblists.org> wrote:
>>>>>>
>>>>>> Defective genes? Suffering from blindness? Whose ideas are these?
>>>>> This sounds like very biased research. Karen
>>>>>>
>>>>>> Sent from my iPhone
>>>>>>
>>>>>>> On Jul 14, 2015, at 2:34 PM, peter altschul via acb-l
>>>>> <acb-l@acblists.org> wrote:
>>>>>>>
>>>>>>> My Retina Tracker Crowdsources Blind Research Participants
>>>>>>> Vision researchers are collecting data with the help of the
>>>>> people who know the most about blindness-patients.
>>>>>>>
>>>>>>>
>>>>>>> Sean Captain
>>>>>>> Curing blindness is, in part, a data-crunching
>>>>> problem. Hundreds of genetic mutations, and ensembles of
>>>>> mutations, can cause vision loss. Sorting out cause and effect
>>>>> requires digging through patient data to find patterns and finding
>>>>> the right people for potential treatments, such as replacing
>>>>> defective genes or regrowing lost tissue with stem cells. An
>>>>> online patient registry, MyRetinaTracker.org, crowdsources this
>>>>> data collection by recruiting the people who know the most about
>>>>> blindness-the people who suffer from it.
>>>>>>> So far, only a few ailments that affect vision can be
>>>>> fixed. Doctors can transplant corneas (the outer lens of the eye),
>>>>> and even replace the lens inside the eye with a synthetic
>>>>> version. What they can't yet fix is the retina-a layer of cells
>>>>> less than half a millimeter thick in the back of the eye that turns
>>>>> light into signals in the brain that become images.
>>>>>>> Most challenging are about 20 rare inherited genetic diseases
>>>>> such as retinitis pigmentosa (RP), which starts by killing cells at
>>>>> the periphery of the retina and works its way inward. Any of at
>>>>> least 84 genes can cause RP (more keep being discovered). Just one
>>>>> gene seems to cause most cases of Stargardt's disease, which
>>>>> usually starts attacking the center of the retina and works its way
>>>>> outward. But it's a monster gene, containing 6,819 base pairs that
>>>>> code for proteins. Mutations on different parts of that gene
>>>>> affect the severity of Stargardt's and can even cause other
>>>>> diseases, including RP.
>>>>>>> "It comes down to which particular gene you have and which
>>>>> particular mutation on which gene you have," said Brian Mansfield,
>>>>> deputy chief research officer at the Foundation Fighting Blindness
>>>>> (FFB) in Baltimore.
>>>>>>> Mansfield is taking on the challenge of finding them with My
>>>>> Retina Tracker, an online registry for patients with retina
>>>>> diseases to store their medial records and provide anonymous data
>>>>> to researchers. FFB soft-launched My Retina Tracker in June 2014,
>>>>> with no press coverage beyond a few niche websites. Yet it
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>>>>
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