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11-07-2010, 10:00 AM | #31 | |||
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Anyway, it is such an obvious venue for Brin, I figure their must be a reason he does not go that route. Okay, here's some info. The change in the logo is called a "Doodle" - Google actually holds an annual competition for children grades K-12 to design one. In looking at their list of Doodles, it appears they go for random, off beat sort of things, so I could see PD fitting in for a April awareness month thing, but it doesn't look they would make it a permanent once a month rotation. I think they have a pretty smart marketing gimmick. People are all abuzz over Doodles because they are random, not patterned (like you don't see one for every given holiday), and designed to pop up in a rather spontaneous way. The fun is not knowing when one will appear and what it will commemorate. It's a rather unique way to create buzz, but making it a regular feature would take all that away. Still, since so many people take note it would be grand to have it acknowledged once even. The question is given that limited exposure and that the message needs to be conveyed through an image, what would PWP want to emphasize? Heck, even just a play on the "Got milk?" ads with a "Got Dopamine?" headline or neurotransmitter pic would with a short video clip that can be viewed would be something that millions would be talking about. Laura |
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"Thanks for this!" says: | just_me_77 (11-08-2010) |
11-07-2010, 10:56 AM | #32 | |||
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Senior Member
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Laura - I think that is the question - If we gained millions of peoples attention for just one day, what is the message? What would move the ball forward? What would be meaningful?
If we had a written or spoken message, how would that be translated into a visual graphic? When the doodle shows up, can it link to more info or does it have to be self explanatory (like John Lennon on his 70th birthday)? I think some times the mysterious ones get a lot of attention because people start asking, "what the ??!" and a buzz gets started.
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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11-07-2010, 11:18 AM | #33 | |||
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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11-07-2010, 03:16 PM | #34 | ||
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An interesting article on the front page of today’s Buffalo News ,” Finding hope in a spider's bite : Venom holds a key to possible therapy for cruel illness, “ describes efforts by a local grandfather to help move an innovative, promising treatmment for Duchenne muscular dystrophy through the pipeline , by funding the pre-clinical research needed to reach clinical; trials. Hiis grandchild is suffering with the disese and is running out of time.
The full article is at: http://www.buffalonews.com/city/article244438.ece BTW an article published by UB in Jan 2010, stated that this treatment, “GsMTx4 appears to have additional applications. Robert Plunkett, associate professor of neurosurgery, has shown that the peptide stimulates neuronal growth and may be useful in the treatment of Parkinson’s disease….. “ Excerpts From the current article on Duchenne’s-- “…By age 10, affected children, almost always boys, usually need braces to walk. By their teen years, most depend on a wheelchair. And as they grow into manhood, they lose their ability to breathe. Few survive beyond their 30s. There is no cure, and the standard treatment of steroids can slow -- but not stop -- the progressive muscle weakness, forcing families into a race against time. All of which is why Jeffrey Harvey, a Clarence stockbroker, couldn't sit still when his grandson, also named Jeffrey, was diagnosed with the disease more than a year ago. Harvey began to look for potential new treatments, surfing the Internet for anything with promise. Out of curiosity, he searched in his hometown, which led him to a laboratory at the University at Buffalo and to a tarantula spider named Rosie. The story of his search highlights a novel potential treatment for muscular dystrophy -- one of several therapies on the horizon. It also shows how challenging it can be to bring a drug from the laboratory to a patient's bedside….” "There is just no drug for these kids other than the steroids to strengthen the muscles, and the steroids have serious side effects," said Harvey, whose grandson is now 3. “UB biophysicists had found a protein in tarantula venom that showed promise against muscular dystrophy, but the idea was greeted skeptically. No one responded when they shopped it around to pharmaceutical companies earlier in the decade. Then Harvey called.,,” Harvey and the researchers formed a small biotech company that hopes to do what the big drug companies wouldn't do,,. "I want my grandson to be able to have this drug," Harvey said… “In September, the Food and Drug Administration gave GsMTx4 orphan drug status, a designation for experimental treatments of rare conditions that helps speed development. Now, comes the difficult part -- seeking an estimated $3 million to fund testing before the drug goes into trials in children. "The thing is, unlike a lot of others, we already have the drug. If we had the money to get it through preclinical testing, we might have it on the market in three years," Harvey said. That's not much money or time in the world of drug development, where companies typically spend hundreds of millions of dollars and more than a decade on one product..” Maybe this is part of our answer. Bypass the drug companies...Scientists, working with patients and families . .. Understand the urgency of getting treatments to patients sooner, not later... Welcome patients at the table, instead of banning them from scientific meetings. Are the Doldrums based on business or scientific oppotunities? We don’t know if the Tarantula cure will pan out, but at least its being given a chance based on the science, not sitting on a lab shelf, because of a business decision. |
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11-07-2010, 04:12 PM | #35 | ||
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There are some really interesting thoughts coming out here.....
The thing of getting people to look at PD seems to be difficult, it is hard to present PD in a way that takes us away from stereotypes, nobody seems to have been able to come up with anything other that MJF or Ali to represent us. the doodle idea is great,whats needed is a fantastic recognizable image that hits the spot. I sometimes think that we need to take it out of the familiar and into a different context that will shock - something like a brief video in which kids play pwp world - slow shuffly unsmiling freezing falling over speaking quietly...... if we were kids we would stand out a mile........... and people would be shouting for something to be done.... we could do that, kids, grandkids might love to be roped into doing us! |
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"Thanks for this!" says: | anon72219 (11-08-2010), just_me_77 (11-08-2010) |
11-08-2010, 06:27 AM | #36 | |||
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Junior Member
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Back to the future,we want research to give us a future,wellness with illness and ultimatley a cure.Much is happening that will be of benefit to us,I applaud that.
But throughout research history people have given up there lives,for some of the greatest discoveries.The days when guts luck instinct and imagination were your only tools.These things you cant quantify and plan,unpredictables with no measured outcomes but risk The greatest risk today is in investing and loosing money,not lives.Improving lives,has become secondary to protecting market strategies and making profit.The greatest profit to us all would be improved health,for the benefit of living and the global health economy.Patent is king of monopoly ,right or wrong there are some things we cant change,but there is much we can.It amused me recently to read an ethical debate on the subject of a famous pharoah and wether his DNA analysis could be released without informed consent from him or a direct descendant,3000yrs dead my memoirs can be safely published then,pehaps, but I must make provision for the eventuality. |
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11-08-2010, 10:04 AM | #37 | |||
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In Remembrance
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I cannot, for the life of me, understand this wall between patients and the scientific/medical community. With the Net it would be so simple to have an ongoing roundtable dedicated to the mutual education of the two groups based on mutual respect and acceptance of each one's ignorance. I know that it would require some innovative thinking to make the two worlds mesh.
Maybe a structure where a group of "moderators" served as translators and filters? The latter would address basic questions that could be answered by simple research on Google outside the forum. Once past that threshold, however, it should be a brainstorming format with the understanding that challenging the established wisdom is an integral part of it.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | just_me_77 (11-08-2010) |
11-08-2010, 10:56 AM | #38 | |||
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Junior Member
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Absolutley no reason why not.
Have you ever thought about the neuros perspective,every one of us going through his door will come out with a different regime of meds, its not easy to get it right more reason than ever to be partners. QUOTE=reverett123;713755]I cannot, for the life of me, understand this wall between patients and the scientific/medical community. With the Net it would be so simple to have an ongoing roundtable dedicated to the mutual education of the two groups based on mutual respect and acceptance of each one's ignorance. I know that it would require some innovative thinking to make the two worlds mesh. Maybe a structure where a group of "moderators" served as translators and filters? The latter would address basic questions that could be answered by simple research on Google outside the forum. Once past that threshold, however, it should be a brainstorming format with the understanding that challenging the established wisdom is an integral part of it.[/QUOTE] Last edited by swept; 11-08-2010 at 10:59 AM. Reason: I need glasses |
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11-08-2010, 02:27 PM | #39 | |||
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Senior Member
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. . . but would it be possible that some doctors feel intimidated (not necessarily the same as threatened) by the knowledge base some PWP groups possess? That would make them have to keep on their toes and mind their P's and Q's. This would likely be an area where they might become red-faced if put nose-to-nose with knowledgeable patients. I am not categorizing all doctors as believing they are on a higher rung of the medical community ladder, but some do have the "holier than thou" attitude.
Seriously understand that I am NOT saying some of us know MORE than a great number of neurologists, because we have never been clinicians. However, WE are the ones living day-to-day with the one disease that most always presents itself as highly ambiguous (even mysterious at times) and sometimes baffles even the best neurology experts. Sometimes it takes a fresh perspective to shine the light on a mysterious disease such as Parkinson's. As those who have the disease, we have nothing to lose and everything to gain by shining our flashlights in dusty, spider-web infested corners; most doctors are in just the opposite position. The distinction comes from what one perceives as the "prize" . . . are they looking for a blockbuster therapy . . . or are they looking for a cure? I am convinced that we will one day run across a rebel who is willing to take a risk and step out on faith as to why, how, where, and when this neurological body system breaks down and turns into PD. In fact, I believe he/she is already working toward that designation. Will the REAL Parkinson's reseacher please stand up? Peg |
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"Thanks for this!" says: | just_me_77 (11-08-2010) |
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