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

[agate]

Biogen Idec is sponsoring a project called Oceans of Hope or Sailing Sclerosis. People with MS are in charge of the yacht, which is going around the world.

Only registered and activated users can see links., Click Here To Register...

[Howie]

I hope they make it. The open ocean is a very unforgiving place, and that size ship, with that many people? I wish them luck!

[SalpalSally]

Did you notice that the only PWMS being invited on this Biogen "promotional" trip
are ones showing little to no disability!! How is that going to show what the true
picture of MS is? BAH!! I really do not, to say the least, like Biogen for this act.

[Howie]

Well, I signed up for the Oceans of Hope newsletter. I am interested in their journey, and this way I can get up-to-date info.

[agate]

Sally, I gave a bitter laugh when I saw this deal too.

Can you imagine all of us here being put in charge of a yacht going around the world? Oy-yoy-yoy!

I hope somebody on board is able-bodied enough to take charge in case of an emergency like a bad storm.

Or an attack by sharks. Or whatever.

Oceans of PR for Biogen.

[Howie]

Whooooooooooooooo lives in a pineapple under the sea?
SpongeBob Howie!!!

Practicing my singing of sailing songs incase someone has to drop out.

[Gabriella7]

Unbelievable!

I'm glad my reaction was shared by others here! Since I've been in a dark place lately.....my first thought was very cynical as I didn't see even a cane amongst the crew members. (Looked again and saw one cane) No wheelchairs, power chairs, walkers, etc....What a publicity stunt for BigPharma Biogen! It will be interesting to follow the voyage! What is this stunt supposed to prove? Is it going to attempt to validate the effectiveness of Biogen drugs in the treatment of MS? What are they trying to prove since really they can't prove anything to those of us who have lived with MS for years.

In my opinion, this is an insult to all people who live with MS as it gives the general public the impression that we who do have a disabling disease are faking it as this voyage would be extremely difficult for a healthy individual without any health problems in excellent physical condition to complete.

Blessings,
Gabriella

[agate]

Words for a sailing song to practice on:

Only registered and activated users can see links., Click Here To Register...

[Howie]

Darn sea critters!

[agate]

This is on the Website:

We want to tell the world that disability can be changed to ability, that we will never stop trying to improve life. We want to create quality of life and value through responsibility and commitment. Sailing around the world is just that: it is hard work, commitment and dependency upon each other working as a team.
We will show everyone that we live our lives to the fullest and that dreams can come true, in spite of having a serious disease. We'll be saying, "Yes, we can still do it!"

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

[SalpalSally]

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.

[agate]

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.

[Gabriella7]

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

[SalpalSally]

BTW, are there any passengers on this ship and if so, who? All the biogen big wigs?

[agate]

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:

Only registered and activated users can see links., Click Here To Register...


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

Only registered and activated users can see links., Click Here To Register...

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.