President –
Lynn Jackson (Canada)
Another year has passed and what a year it has been!
More and more people with dementia are being recognized and helped
in communities all over the world.
Many of you have been out there presenting at conferences,
speaking to the media and spreading the word that there is indeed
life after a diagnosis of dementia. Others have been attending
support groups and have been active in local communities raising
awareness about Alzheimer’s Disease and related dementias.
Keep up the good work!
Our website gets numerous “hits” every
day from every corner of the earth. Innumerable websites have
linked the DASNI website to theirs. A ripple effect is being seen.
My own activities this year have included giving
a plenary presentation entitled “Taking an Active Part in
Decisions Affecting my Later Life” at the Alzheimer’s
Europe conference in Prague. I also gave this same talk in a workshop
at the ADI 2004 conference in Kyoto Japan. I attended the “A
Changing Melody” conference in Toronto, Canada a one day
event for people with dementia and partners in care and care-professionals.
DASNI was a co-host. I was honored to be able to chair this event
as it was the first of its kind in Canada. We are now in the midst
of planning a second conference for the November 2005. I have
worked on the Advocacy Committee for the Alzheimer Society of
British Columbia and have participated in several sociological
research studies about people with dementia.
I wish you all a healthy year to come. Keep on keeping
on!!
Co Vice-President – Mary Lockhart (USA)
2004 was my second term to serve as Co Vice-President
with Carole Mulliken. During this term I have spent many days
and hours serving as a Chat Moderator during hosted chat sessions.
I am also responsible for approving and denying new members and
sending out a welcome letter as a part of our community for DASNI.
I also work on tracking members when they have been absent for
a period of time and following up with their membership.
I also attended our DASNI Retreat that was held
in Oklahoma in November and met up with many new faces that I
had met from chat.
I am currently working with our local Chapter as
a phone buddy to other people that have been diagnosed with dementia.
I also stay busy with my web page where I keep my
daily journal. My site often attracts newly diagnosed people and
with correspondence, I invite them to DASNI.
Co-Vice President – Carole Mulliken (USA)
This year I
- Facilitated the email community.
- Served as greeter/moderator for the email community.
- Wrote an "open letter to caregivers" which was read
on the steps of the state capitol in Jefferson City.
- Hosted chat from time to time.
- Served on the Alzheimer's Association Franklin County Steering
Committee, and participated in the Memory Walk planning committee.
- Organized and led a DASNI International Camp/Conference held
in Oklahoma in October of '04.
- Maintained personal contacts with a number of Alzheimer's
professionals, primarily in the US.
- Initiated contacts with a number of businesses who could be
potential funders in the future.
- Participated in a formal research project with Linda Clare.
Continued a personal effort to maintain phone contact with PWIDs
who have expressed an interest in doing so and who live in areas
where my phone service allows. It has been a very rewarding
experience.
- Served as co-vice president with Mary Lockhart this year.
Secretary – Tracy Mobley (USA)
The first part of the year I stayed very active
with my local Alzheimer support group. We went to the State Capital
in Jefferson City to speak to our Representatives about issues
of dealing with Early Onset Alzheimer's in March.
Then with the kick off of Young Hope being published,
much publicity began to occur with Magazine interviews and Newspaper
interviews which are still on going about the book and the disease
itself.
Late July we were apart of the Alzheimer booth through
our Chapter that was set up at the fairgrounds for 10 days. Having
the opportunity to share our stories and educate others about
the Early Onset of the disease which was a great honor. I was
also a part of the Memory Walk in sharing and testifying about
EOAD as well.
I also became very active in hosting chats, both
for DASNI and The Gathering Place and was given the opportunity
to be able to share both sides of the disease.
I believe in September I became a part of a planning
committee helping one of our Vice-Presidents, Carole Mulliken
plan for a conference in Checotah, Oklahoma. That was a very educational
as well as fulfilling experience. The moments that were shared
in bonding friendships together during that time is a moment that
I hope holds with us all for a very long time.
November, I began and completed the writing of a
children's book about Early Onset Alzheimer's with the help of
our 10 year old son. It should be published Late Spring or Early
Summer 2005.
I became a part of many foundations and organizations
in promoting Early Alzheimer's Disease such as The Leeza Gibbon's
Foundation, The National Alzheimer Library in Chicago and The
Department of Aging in Washington.
I also as far as my duties with DASNI, kept the
minutes for most meeting and helped to prepare agenda's for future
meetings.
The outlook for this year is much more promising
personally as well as professionally.
TREASURER – CANDY HARRISON/PAT RICKERT (USA)
DASN International
12/31/2004 Through 3/12/2005
AMOUNT
BALANCE ON RECORD 12/31/2004 $398.51 USD
12/31/2004 Dividend 0.16
1/31/2005 Dividend 0.04
TOTAL DEPOSIT 0.20
BALANCE IN ACCOUNT AS OF MARCH 2005 $398.71 USD
Director – Shirl Garnet (Australia)
I have been involved in many things this year.
Much of what I have done has been in conjunction
with our local Alzheimer’s Association who have been very
helpful and are very interested and supportive of what I am trying
to do with DASNI. I would add here that they have allowed copy
all the fact sheets and brochures I have used for the last 6 months
at the centre without cost and Alzheimer’s Australia are
doing the
same with printing the DASNI fact sheets to go into the delegate’s
packs for the Australian Conference.
I have spoken at 7 public forums, presented 3 hospital
in-services.
Spoken to numerous special interest groups i.e.
local Seniors group and ‘over 50’s club’.
I have done 4 radio and 3 newspaper interviews as
well as writing articles to the local paper and the State Alzheimer’s
magazine.
I have been involved with the making of a teaching
DVD, which we hope to release in the next few months, aimed at
training people caring for people with dementia in an acute care
or residential setting.
I have placed DASNI brochures in every Drs. Surgery
in the region (47 surgeries) as well I have given each doctor
a fact sheet. I have been disappointed with the lack of response
from all this but keep on hoping!
I have co-ordinated the quilts which have involved
folks from Scotland, England, France, New Zealand, Brazil, West
Indies, Canada, USA, and Australia. The first quilt is completed
and will be raffled at the Alzheimer’s Australia conference
in May. The second quilt has the squares joined together waiting
to be backed and stippled. This will probably be completed in
about 2 months. The directors will have to decide where to sell/dispose
of this quilt.
I am currently preparing to speak at the Australian
Conference in May. The topic is Quality dementia care for people
with younger onset dementia.
I am also preparing to speak at the launch of the
DVD.
I have been appointed to the rural client advisory
committee of the Alzheimer’s Australia W.A. board.
Finally, Graham and I are commencing a ‘Life
group’ through our local church called Living with Dementia
God’s Way. This will be a support group for folks with dementia
and those caring for them.
I was on both the fundraising and publicity committees,
chairing the publicity but due to lack of support both of these
have ceased to function this year.
We will, however, have the funds from the quilts
to help with the financial needs of the group.
Director - Jeanne L. Lee (USA)
Published Author "JUST LOVE ME" My Life
Turned Upside-down by Alzheimer's which continuues to help others.
President and founder of Alzheimer's Awareness and
Prevention Hawaii, a frequent lecturer lending a helping hand
to both early diagnosed, carepartners and the general public with
her vast knowledge and experience and her extensive first-hand
education; holds meetings and 4 times per month speaks for groups
from 300 to as small as 10 if requested.
Member of the Board of Directors of DASNI, Internationally
the largest group for persons with dementia, ages beginning in
the 30"s and loyal supporters. She prints handouts by the
hundreds at her own expense for both businesses.
Member of Alzheimer's International since 2000,
in contact personally with 16 Alzheimer's Groups Internationally.
Represented the U.S. in Barcelona, Spain at the
International Alzheimer's Convention 2002.
International speaker, recently completing 31 lectures
in16 cities in Western U.S. and Canada.
Contunued involvement in familial cell research
at the University of Indiana, beginning in 1985 with her mother's
diagnosis and 17-year struggle with AD. The family can add many
years to her problems before diagnosis and so can Jeanne.
Attended many Conferences, 2001 in Montana, Hawaii,
Oregon Washington State and recently 2004 in Oklahoma. On the
Internet and in person she helped change the views of the old
stigmas of Dementia. She wrote articles for newspapers and other
AD Associations, TV appearences and Radio interviews and has had
5 booths for dementias 2003 and 2004 in senior fairs.
This was put together by myself and a friend for
my new business flyer this year. Hope it will suffice. Each year
holds onto what has been done and adds to the next year. DASNI
remains to be the hold in my life and nothing comes before my
loyality to it. It only needed to have some help here in Hawaii
and at the time no arms were allowed. But believe me DASNI has
brought me from the depths of depression and has almost daily
given me the courage to shout to anyone who will listen"we
are intellegent beings not victims." DASNI is included and
information is passed at every lecture. Q and A always include
DASNI. I feel my business is simply a way of waking up Hawaii
and I have just put a small dent in only one island. I could not
have done it without all of you and the enlightenment DASNI has
brought me.
My thanks go out to all the member new and old who
are doing their part be it just listening and feeling better to
helping others to the big stuff. Think Globally and act Locally.
Chat Director – Alan Gibb (New Zealand)
Chat Host Report, February 2005
Chat numbers have seen the usual ups and downs over
the past year – ranging from 0 to 16 people attending. About
8 – 10 are regular attendees i.e. most days a week.
Structured topic chats such as those hosted by Ben
and guests Dr. Mitchell and David Shrenk have been popular and
well attended.
We have been experiencing problems with the chat
site being inaccessible to some or even all members – particularly
on USA weekends, but other times too. This has been taken up with
the site ”owner” who has often been able to rectify
the problem for a while. It is important that anyone experiencing
problems accessing chat let me know so I can take it up with the
site.
We have been particularly well served by the volunteer
Hosts but as in any organisation this load is being carried by
too few – thank you all who do help. Those who come regularly
to chat do not need a Host and seem to ‘self-host’
quite effectively. However we do need a host to help the new members
coming in to settle down – please assist where you can –
if elected to this responsibility, I will be calling for new people
to fill in the roster.
Director – Sandy Cramer (USA)
I am on the publicity committee and distributed
brochures to local businesses and doctors offices. I host early
chat once a week and talk to anyone who is willing to listen about
the importance of early diagnosis in all dementias. I have enjoyed
the privilege being a board member.
Director – Judy Robbe (Brazil)
DASNI Yearly report – 2004 (International
Liaison)
During the year I was pleased to give several presentations,
the most important being:
* II Fórum de Geriatria e Gerontologia do
Norte de Minas – September 2004
* Palestras p/familiares e cuidadores Hospital Mater
Dei, BH – Sept. 2004
* VI Fórum - “Demência”
- Hospital Mater Dei, B.H. - October 2004 (at which my presentation
was in the form of a letter from a Person with Dementia)
* ABACE (Retired employees Ass. - Banco Central)
– Brasília. November 2004.
During all my presentations I emphasized Person
Centred Care and talked about DASNI.
I run three regular monthly Carer Support Meetings
– each in a different area of town so attending various
socio-economic groups. These meetings began in 1989.
Since 1996 I have been running a 20 hour Training
Course open to all those living or working with persons with dementia.
During this the participants now become familiar with the “DASNI
effect”.
During 2004 plans were made to start up a support
group for persons with dementia early in 2005 which we have done.
Due to the fact that very few people are given their diagnosis
early enough we still have only three people.
I was able to get to Scotland in July 2004 for “New
approaches to Dementia” - a one week intensive course at
the University of Stirling Dementia Services during which I was
able to explain DASNI to the 50 participants from various European
countries.
During 2004 I was invited to do three important
TV interviews and one radio interview.
I answered many E-mails sent from the DASNI website.
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