1' Welcome to the yearly meeting in the Nordic ALS alliance' The third in a long row, I hope

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1. Welcome to the yearly meeting in the Nordic
ALS alliance. The third in a long row, I hope
My name is Jens Harhoff. I am the chairman, and
together with 5 other persons the founder of The
Nordic alliance.

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2. First of all I must give my compliments to
the organizers for an impressive arrangement. If
it was not for Mette Villand Reichelt and her
crew, we wouldnt have been so many of us here
today.

• Gudjon
  Sigrudsson
  Iceland
• Other founders are. Kaj Jørgensen, Jette Møller,
  Birger Berggren og Muskelsvindfonden, all from
  Denmark

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• 3. You have made a fine and interesting programme
  and done some effective marketing. In such a
  case, its easy to be a chairman, when others do
  all the work. I have not interfered much, and I
  believe that Gudjon Sigurdsson from Iceland has
  not interfered much either.

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• 4. This is a young alliance, which I have great
  plans for, and I am very pleased to see that for
  the first time all of the 5 Nordic countries are
  represented here. That we have a Japanese here
  also is fantastic

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• 5. I have many friends in Japan whom I appreciate
  much, and youll hardly find anyone who know as
  much about ALS and respirator as the Japanese do.
  But they are probably a little too far away to be
  a member of the Nordic ALS alliance.

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• 6. Our first meeting was held in 2005, by the
  help from The Danish Muskelsvindfonden. It was at
  the course- and holiday centre Musholm. Every
  country where there are people with A L S should
  have such a place. We were only guests from 4
  countries.

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7. We were about 10 PALS plus helpers and family
from Norway, Finland, Iceland and Denmark. Only
Sweden was missing. But we founded the alliance
and Gudjon became our first chairman. The year
after he successfully arranged a fantastic
meeting in Iceland, with participants from
Norway, Denmark, and of course the host country.
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8.The chairmanship was then supposed to pass on
to a Norwegian since the meeting in 2007 was
going to be held in Norway. But we found no one
willing to take the task. Not that there wasnt
qualified persons, but no one felt they had the
time for it.
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• 9. Åse Søgaard Madsen, whom I know from several
  international meetings, and by the way is as
  Danish as Tordenskjold and Holberg, managed to
  get hold of Mette villand, who agreed to be the
  organizer of this meeting. Meanwhile Gudjon
  withdrew from his position as a chairman, since
  he did not think he had the power to continue. I
  was asked to take over and I have done so with
  pleasure.

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10. I would like to add that the idea of a Nordic
alliance was born in 2004, at the international
ALS-alliance meeting in Philadelphia in USA,
where Gudjon and I met for the first time. That
shows us how important it is to meet personally,
not only on the computer.
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• 11. As a PALS in Iceland you could not get a
  respirator, and the arrangement with carers was
  based on volunteer work and unpaid. There was a
  great interest in learning more about life with a
  respirator, and this was the reason for having
  the Nordic ALS alliance. As we also were able to
  inform about the Danish arrangement with carers,
  we had something to export. .

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• 12. Supported by the chairman of the
  Muskelsvindfonden in Denmark, Evald Krog, we have
  already succeeded in establishing respirators and
  an arrangement with carers in Iceland, and they
  are now planning a Mini-Musholm up there. So
  the Nordic alliance has already proved its worth.

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13. Evald Krog has visited Iceland several times,
and in the office in Århus we have had several
delegations from Iceland visiting.

• .

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14. 14.And this is exactly where we
see our main aim to achieve the same offers to
all PALS in the North. Another aim isBy social
events, to create personal friendships across
borders, with the purpose to increase the
knowledge of treatments, available in the
different countries.
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• 15. We are still waiting for PALS in Sweden to be
  offered a respirator.
• Next years meeting will be held in Sweden, so
  most likely the main theme will be something
  about respirator

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• 16. If we shall be fortunate enough to have a
  politician or some higher ranked official join
  the meeting then our seeds will be sown.
• But we have also great differences in the social
  offers, so there is still plenty of work to do.

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• 17.One might ask We in the North are generally
  speaking ahead of other countries according to
  social offers, so what do we need a Nordic
  alliance for? To that we shall answer Yes, but
  we have other and bigger plans. We want all the
  countries at the Baltic Sea to join in, and then
  we shall change our name to The Baltic A L S
  alliance.

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18. Tommy Petersen has taken the first step and
held a big meeting in Copenhagen with polish
politicians a few days ago.So the thought is not
all that far away.

• .

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• 19..With these words Ill pass on the word to the
  organisers, and I hope we shall have a good
  meeting.
• Welcome, once again.

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• I hope you will all have a lot of nice social
  gettogether.

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