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The DASN group was formally opened on the Yahoo website 8/11/2000.
This was originally done by Laura Smith as she was the only member
at that time with the Internet knowledge to do so. The DASN group
was an off shoot of the Coping With Personal Memory Loss (CWPML)
group, an active advocacy group for people with early stage dementia
and their care partners. In the first month the group totaled
19 people and by the first annual meeting, the number had increased
to 21.
The first official organizational meeting of DASN was held October
6, 2000, during the Heartland Memory Walk in Kansas City, Kansas.
Those who attended included Shannon Ocsody, Laura Smith, Phil
Hardt, Lynn Jackson, and Morris Friedell. The general DASN support
network was polled prior to the meeting as to whether they would
like to participate as directors -- many declined for various
reasons, however, those who showed interest were appointed positions
by the group at hand as to where they believed they might be of
most benefit to the group (even though they were not in attendance
at the meeting). This was the beginning. We were a small network
of like-minded individuals all working to make our dream idea
into a reality. We were not so much concerned with quorums or
policy as we were with our commonality of views and our concern
of making our idea a reality. We felt like getting DASN off the
ground and moving forward was of utmost importance. Again, not
because anyone nominated her to do it, but rather because she
offered, Laura Smith chose to take on the task of making DASN
a nonprofit organization to comply with the state law of Montana,
where Laura resided. DASN had already grown into a global community,
where the location or status of registration was of little importance,
only that it was done.
By the end of the year 2000 the DASN network had grown from 21
to 40. Because Alice Young was going to Montana for a visit, it
was discussed in chat that we would all like to meet our cyber
friends in person and from there, after the most gracious invitation
from Laura Smith, it snowballed into our second Annual General
Meeting, only nine short months later. This was discussed in chat
and on the message boards, everyone who could make it was urged
to do so, those that could not were prompted to let it be known
if they cared to be part of the directors. By now the network
had doubled to 82 and was still not formalized because of the
size.
This was to be the foundation of the official DASN International
where we agreed to form a new DASN International community and
website. The original by-laws were reviewed, amended and adopted.
The DASN(now DASN International) ADI proposal was reviewed and
approved. Directors present agreed that there would be an executive
committee comprised of (and elected at the meeting):
President -Phil Hardt;
Vice-president - Lynn Jackson;
Treasurer - Morris Friedell;
Co-Secretary's - Carole Mulliken and Jan Phillips.
It was agreed that the executive should serve from the date of
election until the next annual meeting, when all positions fall
vacant.
The following Directors were appointed to be responsible for
DASN International committees:
Website (www.DASNInternational.org), Phil Hardt;
Chatroom , Mary Lockhart, Alice Young, and Laura Smith;
E-mail (Yahoo, Mary Lockhart; Carole Mulliken;
Publications and Media Relations, Jan Phillips;
Policy and Strategy, Morris Friedell and Christine Bryden;
Next AGM, Jeanne Lee;
Funding, Candy Harrison;
Correspondence, Carole Mulliken and Jan Phillips.
Although not everyone belonging to the network group was able
to attend, a total of 13 people volunteered and were elected as
directors.
It was further agreed that:
- A quorum at meeting shall be 7 directors, with a majority
being 4 of the 7 present;
- Business can be conducted by email with confirmation of the
e-mail being opened being requested. Voting responses required
within 7 days. In the event of no response, that person's vote
will be counted as in favor of the measure being voted upon;
- Directors may assign their proxy to another Director;
- A 2/3 majority of Directors would be required to suspend a
Director from their position due to incapacity;
- There would be no censorship in chat or e-mail. However, any
inappropriate behavior will be dealt with by the board on a
case by case basis, dealing directly with the individual concerned.
As of this writing, November 20, 2001, our network group now
totals 143 people with dementia and our loyal allies, an increase
of 61 people just in the past 4 months.
Our concerns are global, our intentions noble. We are a group
of people who are not concerned about titles or status as individuals.
Our desire is to work together for the good of other Persons with
Dementia (PWiDs). We believe that through the interaction with
people who are living in similar circumstances, PWiDs can enrich
their own lives, as well as others.
DASN International
Bylaws 2002 (in Word format)
DASN International
Bylaws 2002 (in PDF format)
THE INCLUSION OF PEOPLE WITH DEMENTIA WITHIN ALZHEIMER'S DISEASE
INTERNATIONAL - A PERSONAL VIEWPOINT
Members of DASNI no doubt already know that Wednesday October
15 2003 was a remarkable day in the history of Alzheimer's Disease
International (ADI). This was the day in which a person with dementia
was first appointed to the Board of ADI. People with dementia
around the world are now extremely well placed to have their views
listened to - and acted upon globally. This bolsters the great
work already being carried out by people with dementia in national
and local Alzheimer associations.
I am writing this brief account of the changes that have taken
place over the past two years as a tribute to Christine Bryden
who has been elected to the ADI Board, to Peter Ashley whose name
was put forward for nomination to the Board, and to members of
DASN International. It is your commitment to advocacy and to making
a difference for people with dementia generally that has brought
about these far-reaching changes.
From a DASNI perspective, the most readily identifiable beginning
of this pathway to an ADI appointment is probably the first DASN
meeting at Montana in June 2001. The real starting date is well
before this though when DASN's founders encouraged email communication
between people with dementia by setting up the internet chat room.
The Montana meeting set the scene for changes in ADI by developing
a strategic framework that clearly set out areas of concern for
people with dementia. This Montana proposal contained a number
of recommendations for how ADI and Alzheimer's Associations around
the world could give greater recognition to the needs of people
with dementia and their care-partners.
Immediately following the Montana gathering, a contingent of
two, Christine and Paul Bryden, travelled to London and met with
the ADI Director, Elizabeth Rimmer, and Chairman, Nori Graham,
to present the DASN proposal. From this emerged a suggestion that
people get together at the forthcoming ADI conference in New Zealand
to look at ways the Alzheimer's movement might become more inclusive
of people with dementia.
The October 2001 ADI conference in Christchurch, New Zealand,
was an extraordinary event because of the input of people with
dementia. This was the first time people with dementia attended
the international conference as full participants. Twelve people
came, some from as far away as Canada, United States and Australia.
The contribution of these twelve turned the conference into an
amazingly challenging and inspirational event - for conference
delegates and the wider public. Here were people with dementia
showing in such an irrefutable way that not only does life continue
after diagnosis but that people with dementia have much to offer
within the Alzheimer's organisation.
People with dementia participated throughout the conference,
from the delivery of a standing-ovation opening address to oral
presentations, running workshops and media interviews. The DASN
stand was a drawcard in the exhibitors' hall. The brochures that
had been produced by DASN members were in high demand and quickly
became "collectors' items" for the delegates.
A group of people with dementia (all members of DASN International)
and Alzheimer's Disease International (ADI) executive and staff
was formed at this conference to work through strategies for Alzheimer's
associations around the world to be more inclusive of people with
dementia. The tasks tackled by the group were a review of the
wording of the ADI Charter of Principles for the Care of People
with Dementia and their Carers and the production of a factsheet
on how Alzheimer's groups can better include people with dementia
in their activities. The outcomes from the working group can be
viewed on the ADI website - www.alz.co.uk/publications. In addition
to the factsheet, there is a section on the ADI intranet that
provides suggestions for member organisations on how to work more
closely with people with dementia.
The ADI conference in Barcelona in October 2002 was the second
milestone of change for people with dementia. At their meeting
held beforehand, the Council decided to seek ways to increase
the participation of people with dementia in ADI itself. A new
working group was convened to give guidance back to Council on
this when its members next met in October 2003. This group, again
consisting of people with dementia and ADI executive and staff,
communicated together by email during the subsequent months.
A major focus of the working group was looking at how people
with dementia could become involved in ADI decision-making. There
were a number of hurdles to be overcome with this, such as making
provision for people with dementia to be appropriately supported
in any tasks they took on. At that stage, Peter Ashley was the
only person with dementia on the executive or board of a national
Alzheimer's member association. Peter drew on his personal experience
to give invaluable assistance to the working group on factors
that could affect a governance role.
The final recommendation from the group was that up to two people
with dementia be elected on to the executive (now known as the
board) of ADI. The terms and conditions of office should be the
same as for other members of the Alzheimer's board. However, special
consideration is needed for financial help or other assistance
that board members with dementia require to attend and participate
fully in meetings. The specifics of any help will be individually
worked out with incoming board members.
The working group's recommendations were included in the wider
governance and membership review which was being carried out by
ADI at the same time. These were approved in principle by the
ADI Council at the Dominican Republic conference. Formal constitutional
changes will be adopted in the ADI bylaws next year.
During the early part of this year it seemed that a person with
dementia could not be elected into a governance position in 2003
because of the length of time taken for bylaw changes. This situation
changed in recent months with the unexpected occurrence of two
vacancies on the executive committee. Christine was nominated
by her member country, Australia, and it was a great thrill to
hear her name announced after the votes were counted. Part of
Christine's new role will be liaising with people with dementia
through their Alzheimer's associations (and through DASN International)
so that she is able to represent their views on the board.
The appointment of the first person with dementia within ADI
is a gigantic step forward - a step that was thought impossible
only a short time ago. The credit for this turnaround goes to
members of DASN International and to the other active campaigners
with dementia who have worked hard to be recognised within the
Alzheimer's movement. The election on October 15 is truly an occasion
for everyone to celebrate.
Verna Schofield
2 December 2003
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