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Thread: "Sailing Sclerosis," voyage around the world with people with MS as the crew

  1. #11
    Distinguished Community Member SalpalSally's Avatar
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    Quote Originally Posted by agate View Post
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    This is on the Website:



    It brings to mind a US stamp that was issued back in the 1980s, saying "Disabled Doesn't Mean Unable."

    While we at home will be saying, "no, I cannot still do it
    and I wasn't invited anyway" As a matter of fact, most
    of us didn't even hear about this cruise, until after it sailed.
    Love, Sally


    "The best way out is always through". Robert Frost







  2. #12
    Distinguished Community Member agate's Avatar
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    I heard about it only yesterday through an e-mail through Google Alert. Maybe they recruited participants mainly in Europe--it looks as if the crew members profiled on their Website are all in Europe.

    It would be interesting to know how they were chosen.

    Well, I wish them calm seas.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #13
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    The stamp is appropriate and shows a man who is in a wheelchair and can still function at his work. But......can you imagine the crew with MS using assistive devices such as canes, wheelchairs, walkers, etc. on the deck of a sailing ship while it tosses and tilts.....it would be a real tragedy as most would go overboard!

    So a voyage around the world with a MS crew is just not being realistic!

    JMHO!

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  4. #14
    Distinguished Community Member SalpalSally's Avatar
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    BTW, are there any passengers on this ship and if so, who? All the biogen big wigs?
    Love, Sally


    "The best way out is always through". Robert Frost







  5. #15
    Distinguished Community Member agate's Avatar
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    No passengers. Everyone on board is considered part of the crew.

    They're dividing people up into categories and making it fairly clear what each category can expect:

    http://www.sailingsclerosis.com/medi...n-form-eng.pdf


    According to the application form, the MS has to be fairly well under control:

    http://www.sailingsclerosis.com/medi...n-form-eng.pdf

    And you have to have valid travel insurance.

    They're trying to have representatives of each destination country on board:

    The ambassador category.


    On most legs of the voyage thereŽll be several nationalities on board. Sailing Sclerosis aspires to have at
    least one participant on board from the destination country on each leg - a kind of ambassador.


    Anyone with MS can apply, or at least that's how it looks to me--some paperwork from a neurologist is needed.

    The Profiles section contains brief biographical sketches of a few of the crew. Most seem to be from Denmark, and if there's a Biogen connection anywhere among them, I haven't found it.
    Last edited by agate; 06-17-2014 at 10:20 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  6. #16
    Distinguished Community Member SalpalSally's Avatar
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    Hey Ann, aren't you in Boston, the final destination.
    You could meet the ship and take pictures? FUN!!
    Love, Sally


    "The best way out is always through". Robert Frost







  7. #17
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    This is just a hoax paid for by Biogen and other sponsors who have donated money. Every time I go into the MS Center the Biogen representative is there talking with one of the neurologists. The main symptoms with MS are fatigue, balance problems, and weakness so how in the world could these people do this job?

    I looked at the other sites.....the reason for the voyage is "to change the perception of MS". This is a non-profit organization (headed up by a MS doctor who is the connection with Biogen). This is where they have spent their donation monies purchasing the yacht and recruiting people with MS (?) to go on the trip in order to change the public's perception of MS!!! Biogen is involved in order to change public perception of how well their pharmaceuticals change the health of people with MS.

    This is wrong on so many fronts!!!

    Blessings,
    Gabriella
    Last edited by Gabriella7; 06-17-2014 at 01:20 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  8. #18
    Distinguished Community Member agate's Avatar
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    In all fairness to the efforts being made by this organization, they are putting people in categories based on their level of skill and experience in sailing and their level of physical capacity--as well as emotional health apparently, for there is a fairly extensive psychological questionnaire included with the application materials. The voyages vary from about 4 days to 5-6 weeks depending on what what they decide you're up to--and probably also on what you would like.

    Not everyone is going around the world. There are many other voyages to choose from.

    And there are definitely experienced yachtspeople who don't have MS on board:

    Oceans of Hope is unique in being crewed by a mix of people with MS and professional sailors.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  9. #19
    Distinguished Community Member Cherie's Avatar
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    We have several sessions of sailing lessons for those with disability here including para and quadriplegics. There are several PWMS who are wheelchair bound who sail quite successfully. last summer the MS Dream Center did 4 classes of 10 people each and this summer they have increased it to twice that.

  10. #20
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    Whatever floats your boat as they say. It is fine if PWMS want to learn to sail, parasail, snowski, or whatever on their own time but this "Sclerosis Sailing" just doesn't prove anything. A non-profit organization who raises monies to partner with BigPharma and sail around the world to prove "what"?

    In all fairness to the majority of people who are living with MS and all the other non-profit organizations who are raising money for research and future treatments for MS....changing the public's perception of MS is only going to reduce the amount of money that the public is willing to donate.

    You don't prove how disabling this disease can be by utilizing basically healthy PWMS to work on a yacht sailing around the world. In the past monies have been raised by showing the ugliness and desperation of a disease (think of AIDS & Cancer) and the numbers of people who have died as a result.

    But these non-profit organizations have raised enough to find treatments and cures for AIDS & some CANCERs that really work. The MS organizations are still trying to raise money for research.

    JMHO

    Gabriella
    Last edited by Gabriella7; 06-17-2014 at 09:23 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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