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President's Report

Another year has past and we have seen DASN International grow by almost double as more and more people are being diagnosed with dementing illnesses.

Many of you have been "out there" at conferences, press meetings and support groups spreading the message and advocating on behalf of people with dementia (PWiDs) that there IS life after a diagnosis of dementia. Some of you have been doing this quietly from your home with the aid of your computer or telephone. In either case the word is getting around that PwiDs are not going to take their problems lying down! By sharing and communicating our feeling, concerns and helpful tips on how to cope we have surprised many of our health care professionals by staying as well as we can.

We have been talking about dementia and in turn helping to decrease the stigma that it brings.

ADI (Alzheimer's Disease International) has listened to the growing voice of PWiDs and has made sure to include us worldwide. An ADI Fact Sheet soon to be distributed shows the outcome of ADI working with DASNI, to encourage the inclusion of PWiDs in Alzheimer organizations and in society itself.

ADI has again this year made sure that a PWiD will give a plenary address on the first day of their annual conference. Last year's address was unprecedented when Christine Bryden gave a presentation that received a standing ovation. Peter Ashley will be presenting this year and we look forward to another PWiD success.

This month (October) we have received notice that we are now exempt from USA federal income tax under section 501 (a) of the Internal Revenue Code as an organization described in section 501 (c)(3). This is great news as we can now target large corporate donor/sponsors who can benefit from our new status.

Our web site, www.dasninternational has had almost 13,000 hits on it since August 2001, which is quite incredible for a small organization that has about 180 members. The Fisher Foundation in New York who has been in charge of our chat room is building us a new one! We are helping them to design it so it will be easier to get to and manoeuvre around inside. The new room should be ready November 1st. Instructions on how to get to it will be posted on the Yahoo email site and on the DASNI web site.

We hope to increase our membership as we distribute brochures and newsletters to an international community at the next ADI conference in Barcelona this year. There are many more people out there who could use our help.

This next year will see some changes as we move forward, onward and upward. Dassy, our turtle mascot's wings are in formation and flying. We will have a new Board of Directors. In August and September we asked YOU the DASNI populace who you would want to nominate as a Director. Nominations have closed, and the new Directors will be announced at the AGM which will take place on line tentatively in November, depending on if we have a chat room or not by that time.

As we move into this next year I hope that spirits remain high and we can continue to "Think Globally and Act Locally". Remember, it's okay to have our low energy, down days. That comes with the illness. Let's make the most of our good days and push ourselves to the limit to achieve the most out of life that we possible can.

We as DASN International can best move forward as a team as we have been doing so far. Let's continue to show the world that we are not going to be lost or forgotten. We are human beings, that despite our terrible diagnoses, need love, friendship, support and dignity.

Thank you all for helping make this world a better place for PwiDs to live.
Lynn Jackson - Vice President (Acting President)

Treasurer's Report

Morris's Personal Advocacy Activities

My chief activities were:

Co-Secretary: Jan Philips

Jan, with the help of her husband Wade, are the ones who really have put a "face" to DASN International. She and Wade worked very hard last year to design and make the wonderful booth that we had at the ADI conference in Christchurch New Zealand. They printed all the brochures by hand in their home and made hundreds of bookmarks as well as the business cards for those who attended the conference. Needless to say, the DASN International booth was the "hit" of the conference. The world, thanks to Jan and Wades hard work, was able to find out about just who DASNI was and what we stand for.

Director (Retired): Laura Smith

Laura graciously hosted a meeting of DASN Directors at her farm in June of 2001.

Her wisdom of starting CWPML (Coping With Personal Memory Loss), spurred on the idea of having a group for people already diagnosed with dementing illnesses. Dementia Advocacy and Support Network was born. At the Montana meeting we realized that we needed to change to the name to DASN International to make sure that we encompass all the PWiDs in the world that may need help and support.

Laura designed the Dassey Logo and is responsible for initially setting up the chat and email community on the Yahoo site. Thank you Laura, we have a lot to be grateful to you for.

Director (Retired): Alice Young

Alice, the matriarch of our group was the catalyst behind the Directors meeting in Montana. She organized a session at this reunion that taught us how the 12step program could be used in the case of Alzheimer's and dementia. Alice untiring commitment organized us all to write letters to Oprah Winfrey to raise awareness about our situations. She always seems to have the right words to say when a person is in need or feeling down.

Co-Secretary: Carole

DASNI's email community through Yahoo! continues to grow. We now have 186 (+/-) members. A number of new and highly involved members have made themselves known to us, and our exchanges have helped to spread the word about some excellent new programs that we have tried to transplant in our own ways. Most notable has been the Americanized version of the Alzheimer's Café idea. Jeanne Lee has worked hard on a Hawaiian variety, and Ben Stevens' Brain Health Club is a similar type of effort.

We have added two powerful professionals to our community in Elaine Silverio and Noreen Gray. Elaine specializes in leading support groups for early stage people, and Noreen oversees the training of staff working for a multi-state long-term care corporation.

Most of my advocacy efforts have been in hosting the email community daily, greeting newcomers, responding to queries, and also initiating topics for discussion as needed. Developing dissemination materials for other DASNI members and supporting their public speaking efforts has been a second area of emphasis for me. I have helped with speeches, developed PowerPoint presentations, and designed a quarterly newsletter to be available to any DASNI member. One of my presentations will be given in a workshop at the ADI Barcelona conference. The DASN Introduction PowerPoint has been sent to every DASNI member requesting one. I am aware of several members using it in their community and professional organization presentations.

The possibility of conducting video-teleconferences occupied me for several months. I hope to be able to interest ADI in telecasting DASNI's next annual AGM for us.

Locally, I have served on the Franklin County Advisory Board for the Alzheimer's Association. I also served on another Memory Walk planning committee. In addition, I have made presentations for a professor of occupational therapy at a local university and spoken to a group of 60 social workers in long-term care facilities. In addition, I have met with the director of the neuropsychology and mental health department of the St. Louis Region Veteran's Hospital, making tentative plans to help train their new neuropsychology interns every few months.

I plan to focus a lot more attention on spreading information about DASNI to other organizations in addition to the Alzheimer's Association. Reaching out to people with other dementing illnesses seems important to me at this point. In addition, I am developing materials to help the newly diagnosed understand the symptoms of dementia that are less well understood than memory loss. I feel people with support organizations need to be better informed about agnosia, apraxia, abulia, etc. And I am working on developing empathy and dementia training for those who have the greatest influence on the quality of life of people in nursing homes - the nurses' aides.

International Liaison Report

Christine Bryden's Personal Advocacy Activities

Phil Hardt (President - retired 2002) Report

I have kept very busy by primarily speaking to thousands of individuals across the country and by handing out the various brochures I've done to help them to live positively with HD! Activities during last year include:

Director: Candace Harrison: Fund raising

A list of possible groups to pursue for donations to DASNI have been researched; either through direct contributions or submission of a grant proposal. This includes approximately 15 different agencies that have listed on the internet, descriptions of their interest in funding such groups that might include DASNI. One of the criteria for submission of an 'interest' letter for possible funding to these agencies is that you have a valid non profit statue with the US Franchise Tax Board. While DASNI had submitted all of the paper work to the respective agency, it would seem that 9/11 may have delayed the usual 8 week approval process.

At last account, September 2002, the Directors had to resubmitted current home addresses. Hopefully, the approval is forthcoming.

At the time the official approval is granted, the process of sending off inquiry letters for funding will continue in earnest. After checking with my resources, I decided that without the official approval, any proposal would be viewed as 'poison' now and in the future. The delay in this process has greatly hampered the members of DASNI from sending addition delegates to the ADI conference in Barcelona. It has as impacted the sending out of materials on DASNI that could have spread the word locally to interested groups and affected people.

Director: Mary Lockhart: Chat Hostess

Chats online have been a great way for us with dementia to meet twice a day to get acquainted with others all over the world. We talk about how our day is going, what our weather is like, what has been bothering us, news we have heard on medication and etc. and we even joke and laugh out loud at our mistakes in writing and spelling. It is a place where we can go and others understand what we are dealing with.

Each week we have picked Tuesday and Thursday to have for Topic chats. This is where other chatters send in topics that they would like to be discussed. After chat they are put in a summary and posted to the DASN board so other members of DASN can read what was discussed. We have had to move from several chat rooms, which makes it so hard for many of the chatters and we hope to have a permanent place by November.

I have been hosting these chats for several years now and have much help from Alan in New Zealand and Ben in Texas.

The Wired News featured Alice Young and me in a article on July 15, 2002 www.wired.com/news/medtech/0,1286,53815,00.html

The Wall Street Journal featured me in a story on July 18, 2002 online.wsj.com/article_email/0,,SB1026928643190199240,00.html

Director: Christine Jonas-Simpson: Research Liaison

Public papers given where DASNI was included in the presentation:

Researchers and Research Studies Facilitated through DASNI

Director: Jeanne Lee-Advocacy

Joe Timassy/Penny Griebel: (Joint PwiD/TAB Director) - Advocacy

Since being diagnosed with Alzheimer's in 1994, Joe Timassy has been a strong advocate for research, participating in clinical trials for Alzheimer drugs, in an effort to slow down the progression of his Alzheimer's, and to help find a cure.