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Thread: Palermo's hope, tourney endure

  1. #1

    Palermo's hope, tourney endure

    Palermo's hope, tourney endure
    Jeff DiVeronica • Staff writer • August 7, 2010



    Brothers Ricky and Jim Palermo and their father, Pat, had modest goals when they came up with the idea to host a golf tournament to benefit spinal cord research

    In year one, they hoped for $5,000 but raised $11,000. Fourteen years later, the Ricky Palermo Spinal Injury Golf Tournament has generated $560,000.

    That amount will increase again after today's event at Terry Hills Golf Course in Batavia that is expected to include 230-plus golfers and 100-plus volunteers. A dinner tied to the event tonight at Genesee Community College should draw more than 400 people.

    More than ever, Ricky Palermo is excited.


    The 50-year-old who has been a quadriplegic since a car accident in 1981, just two years removed from being named Byron-Bergen's High School's Athlete of the Year, thinks doctors at The Miami Project To Cure Paralysis are close to a breakthrough.

    "I've had my mind in that direction the whole time," Palermo said. "I don't know if they're going to come up with something right away, but I know I want to have my body ready if they do."

    His body feels more ready because he exercises every other day at the YMCA in Batavia on a special stationary, computerized bicycle that moves his legs. Palermo pedals about 6.5 miles in his 30-minute workout

    continue....

    http://www.democratandchronicle.com/...tourney-endure

  2. #2
    Senior Member Schmeky's Avatar
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    . . . . thinks doctors at The Miami Project To Cure Paralysis are close to a breakthrough
    There has been nothing leaked, revealed, or published by MP that would support this assumption. Quite the contrary, they have indicated anything close to a "cure" is some years away.

    To bad this individual is giving $560,000.00 away to MP to support 20+ years of continuing schwann cell research when money for actual human trials is needed.

  3. #3

    Unhappy

    Quote Originally Posted by Schmeky View Post
    There has been nothing leaked, revealed, or published by MP that would support this assumption. Quite the contrary, they have indicated anything close to a "cure" is some years away.

    To bad this individual is giving $560,000.00 away to MP to support 20+ years of continuing schwann cell research when money for actual human trials is needed.


    You are right Schmeky, they get sooooo muchhhhh money from everybody, I think they will be ahead from everyone else to do clinical trials. I live 50 minutes apart from where they are.

    Why do they take them so long I don't know. I wish Dr. Young had their money.

  4. #4
    Senior Member 0xSquidy's Avatar
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    Quote Originally Posted by Schmeky View Post
    There has been nothing leaked, revealed, or published by MP that would support this assumption. Quite the contrary, they have indicated anything close to a "cure" is some years away.

    To bad this individual is giving $560,000.00 away to MP to support 20+ years of continuing schwann cell research when money for actual human trials is needed.
    I agree. Evidence hits on everybody's heads and it's still hard for me to see them doing the right thing.

    I would like to know what is Miami Project investing the money in exactly.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

    http://www.fenexy.org (soon in english too)

  5. #5
    MIAMI Project and Christopeher Reeve Foundation like the notoriety instead of real announcements of progress. Same with Cohen; always touting a gala and parties. Let's go with the clinical trials announced this week and Wise's trial. There is going to be more this year and next and the other groups will be left in the dust.

    keepimg on

  6. #6
    MP pipeline.

    Pregabalin is for neuropathic pain. Riluzole is for acute SCI.

    http://www.miamiproject.miami.edu/Page.aspx?pid=339
    Last edited by antiquity; 08-08-2010 at 04:59 PM.

  7. #7
    Quote Originally Posted by keeping on View Post
    MIAMI Project and Christopeher Reeve Foundation like the notoriety instead of real announcements of progress. Same with Cohen; always touting a gala and parties. Let's go with the clinical trials announced this week and Wise's trial. There is going to be more this year and next and the other groups will be left in the dust.

    keepimg on
    Sabrina's galas and parties are fundraisers. If everyone held fundraisers and donated to research, we would be way ahead in the race to a cure. I wish everyone participated in fundraisers! IMO, she's a great role model for a number of reasons.

    http://www.sabrinacohenfoundation.org/index.html

    U2FP is going to dedicate time at Working 2 Walk to discuss how everyone can have a role in advocating for research. It's so difficult to inspire this community to take ownership in advancing a cure. I've studied other communities' successes and hope in the near future, the SCI community will begin to understand the promise research holds and our responsibility to support it.

    What have you done to support SCI research today?
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  8. #8
    Quote Originally Posted by IMHopeful View Post

    U2FP is going to dedicate time at Working 2 Walk to discuss how everyone can have a role in advocating for research. It's so difficult to inspire this community to take ownership in advancing a cure. I've studied other communities' successes and hope in the near future, the SCI community will begin to understand the promise research holds and our responsibility to support it.
    From my experience there is no-way of getting many SCI people to support research. The only way to go I see is to try to find the few scattered SCI-fighters & put them together to shoot at strategic targets.

    I have also to say that researchers are not helping sometimes when they fight just for their line of reserch & denigrate the others. It is also very discouraging for a person with SCI that wants to help to see reserchers fight instead of collaborate to find a cure for us.

    IMHopefull, do you think it is possible to replicate with the SCI community other communities' successes?

    Could you briefly say the key success points of other communities that -from your point of view- our community is missing?
    In God we trust; all others bring data. - Edwards Deming

  9. #9
    Senior Member Schmeky's Avatar
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    I respect and support all organizations conducting SCI related research. I am surprised to see the quantity of TBI and acute SCI activities at MP. They have been doing a clinical trial "initiative" for a few years now to get their schwann cells to trial. I didn't know MP was doing a clinical trial on Lyrica.

    I have never been overly impressed with their schwann cell research to remyelinate axons; Schwann cells are not very efficient at this task.

  10. #10
    Paolo- I agree that we will never really coalesce as a community. There are too many organizations lobbying for the same funds. We really don't have a umbrella society like MS. Unfortunately, I have seen the politics of differrent orgs cause harm to one another. As a sci advocate who has been to various meetings and fundraisers I have witnessed our peers form 'in groups' and 'out groups' depending on affiliation. Strange since we all have the same goal.perhaps a survival trait?

    Maybe a real treatment will be the key to uniting us

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