DIRECTORS REPORTS FOR DASN INTERNATIONAL'S ANNUAL GENERAL MEETING 2002
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)
- 11/01 from DASN to DASN International $900
- 12/01 from Christine B $267
- 08/02 $575 from online Donation Drive
- 3/02 for accountant to Phil $375
- 8/02 reimbursement to myself for paying Artfax (printing) $1150
- Balance is $188 (the bank fee is $4/month).
Morris's Personal Advocacy Activities
My chief activities were:
- the PWiD-TAB communication workshop I did with Christine in New Zealand
- coauthoring with her "A word from Two Turtles," a guest editorial that appeared in the June issue of Dementia,
- writing "Awareness: A Personal Memoir on the Declining Quality of Life in Alzheimer's," forthcoming in Dementia,
- writing an essay, "Holistic Interventions for the Personality-Rehabilitation of Brain-dysfunctional Persons,"
- helping Linda Clare develop her research project on the rehabilitative effect of DASNI,
- presenting an account of DASNI at the Alzheimer's Assn. Public Policy Forum in Washington
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.
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
- After the success of the inclusion of people with dementia (PWiDs) in the Australian National Alzheimer's Conference in March 2001, Morris Friedell and Christine Bryden worked up a proposal to the Alzheimer's Disease International (ADI) for the participation of PWiDs at the ADI annual conference in Christchurch in October 2001. This proposal was discussed and modified by a group of DASNI members who met in Montana in June 2001 and volunteered to be a Founding Board.
- Christine submitted this proposal called "A new strategic framework to address the needs of PWiDs and their care-partners" to ADI, and met with the President, Nori Graham, and Executive Director, Elizabeth Rimmer, of ADI in London on 29 June 2001 to discuss it. The proposal suggested changes in ADI's charter to be more sensitive to the needs of PWiDs, and that PWiDs play a more active role in ADI activities including at its annual conference in 2001 in Christchurch.
- Elizabeth Rimmer wrote to the DASNI President, Phil Hardt, informing him that the ADI Council would consider the DASNI proposal. She also informed him that ADI was setting up a Working Group make recommendations to the ADI Conference in 2002 in Barcelona concerning the inclusion of PWiDs in ADI activities, and making appropriate revisions to ADI's charter of principles.
- The Christchurch Conference Organising Committee Chair, Wendy Fleming, invited DASNI to submit a proposal for inclusion of PWiDs in the ADI annual conference 2001 in Christchurch. This proposal was submitted and accepted. ADI offered DASNI a booth, and invited Christine to give a plenary address and to facilitate PWiD Discussion Sessions at the ADI 2001 Conference.
- DASNI was asked to nominate PWiDs to be members of the Working Party on the inclusion of PWiDs in ADI activities, which is chaired by Verna Schofield. This Working Group met during the Christchurch conference, and was attended by Lynn Jackson, Morris Friedell, and Jan Phillips. Verna Schofield was very welcoming and supportive of the PWiDs who attended from the US, Canada, Australia and NZ.
- Following the Christchurch conference, the conference organising committee wrote to DASNI acknowledging the contributions made by PWiDs to making the a world first in terms of their participation. DASNI was invited to put a proposal to ADI for PWiD participation in the conference in Barcelona in 2002. This proposal was accepted in its entirety, and Peter Ashley has been invited to give the plenary address, DASNI will have a booth, and there will be PWiD Discussion Sessions, as well as active participation by DASNI members in the conference sessions.
- Verna Schofield advised DASNI of a Revised Charter of Principles for ADI which is more PWiD-oriented, which has been developed in consultation with members of DASNI.
- DASNI invited ADI to nominate a representative as a non-voting observer on its new Board to be elected after the AGM. Verna Schofield accepted DASNI's invitation to represent ADI in this manner.
- Summary: DASNI had a major impact on ADI and its activities during the year.
Christine Bryden's Personal Advocacy Activities
- Developed DASNI funding proposal to Pfizer Foundation, backed by Pfizer Australia and Alzheimer's Australia, for PWiDs to go to Barcelona from around the world. Unsuccessful as Patient Support proposals not being considered in 2002.
- Plenary address to Australian Alzheimer's Conference, with Morris Friedell, Canberra, Australia, March 2001
- Development of content, with Morris and Friedell, and facilitation of PWiD discussion sessions, as well as Convenor PWiD Focus Group advising Alzheimer's Australia Executive at this conference. Succeeded in having logo changed, as well as web site, support groups and consultation of PWiDs for Association policy and programs.
- Member of Australian National Alzheimer's Programs Steering Committee, 2001-2002
- Talk to rural care workers and families, Wagga Wagga, Australia, May 2001
- National TV, 7.30 report, 5 min, June 2001
- Speech to MAREP, Hamilton, Canada, June 2001
- Talk to Canadian Alzheimer's Society, Toronto, Canada, June 2001
- Talk to ADI, London, June 2001
- National TV, Sunday Sunrise, 10 min, July 2001
- Local TV, advertisement on driving and dementia, August 2001
- Talks for Northern Territory Alzheimer's Association, September 2001
- Plenary address to Mental Health and Spirituality Conference, September 2001
- Plenary address to ADI Christchurch, October 2001
- Article in Dementia Journal, June 2002
- Editorial, with Morris Friedell, in Dementia Journal, June 2002
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:
- Michigan - (October 8-11, 2001) Spoke at 3 support groups, video taped "Living Positively with HD" that was shown during the months of October and November on Michigan's public access channel. Because of the information this video contains it was copied by the Michigan chapter and mailed to each chapter in the US during last January.
- San Francisco- (October 18-21, 2001) Spoke at 2 support groups
- Orange County - Los Angeles (November 11-12, 2001) Spoke at Annual general meeting
- San Antonio (February 16, 2002) Spoke at support group meeting
- Orange County (February 13, 2002) Met with Kathy O'Brien, Vice President, Program Services with the U.S. Alzheimer's Association to discuss DASN International's goals and solicit her support
- Houston (February 18, 2002) Spoke at support group meeting
- Tucson (March 17, 2002) Spoke at support group meeting
- Seattle (March 21, 2002) Spoke at 3 support group meetings
- Portland (March 23, 2002) Spoke at Annual General meeting
- Sacramento (May 4-6, 2002) Spoke at support group and then at annual general meeting
- Michigan (May 26-28, 2002 Keynote speaker at Michigan's Annual general meeting
- Prescott (May 31-June 2, 2002) Organized Phd and caregiver retreat here in Arizona and mailed out over 1000 letters to Phds and neurologists in the state. Was one of speakers during the weekend too! Secured doctors, physical and speech therapists and nurses, who attended and spoke. Had 18 individuals with HD attend, in addition to other volunteers, and care partners!
- San Diego (May 14-16) Asked by Dr. Jane Paulsen to speak on panel at kick off of PREDICT study. This is THE very most important research study going on now that will have immediate benefits for improving the quality of life for all of those living with HD. It will provide hope now for families struggling with HD through better understanding of the "softer" symptoms and pertinent information that will flow as a result of the data collected!
- Iowa (June 7-9, 2002) Spoke at Iowa's Annual general convention at Storm Lake. Presented several workshops and entertained everyone the night before with piano music!
- May 2002 Got Arizona Governor Jane Hull to proclaim May as HD Awareness month
- June 2002 Worked with another at-risk chapter member to retrofit HD Public Service Announcements given to me by the Michigan chapter with our chapter's local information. They have been playing on our local COX Cable TV stations for last couple of months!
- Articles written: Step-by-step instructions on how to apply for Social Security Disability that can be found on Jerry's Lighthouse site. Personally helped six Phds receive these benefits. "Zero Suicides" brochure that warns that those with HD face a double whammy and need to treat depression early. It can be found on Jerry's old Lighthouse site but will soon be transferred to his new one. Guidelines on "14 Changes that Could Signal Concern With HD" to help others recognize the "softer symptoms" of HD and the "HD At-Risk Checklist" which recommends what those who are at-risk should be doing and getting as far as insurance, etc. is concerned!! Both can be found on Jerry's Lighthouse site. www.hdlighthouse.org
- Continuing to work with the Telerounds group in Tucson to produce a training video on speech and swallowing difficulties found in HD! They have made training videos on speech and swallowing problems for every other neurological disease except HD- so far! They then broadcast these training videos all over the US into hospitals, medical training centers and universities. The broadcast is then made into video cassettes for additional training purposes. Funding has been approved and production should begin early next year! Arizona Affiliate members will serve as the real-life examples throughout the video!
- Helped establish anonymous testing for HD in Arizona. This helps those who don't have the money to afford all of the visits "recommended" in the protocol to safely find out if they're positive or not. Two of my own children went this route last December, as you will remember, and since it was me paying for it I was sure glad it only cost $650 for both of them to get their results instead of about $2000. Testing anonymously has also provided a safe way for those who have insurance to be tested sans their insurance company knowing about it. They can then make necessary plans and adjustments to their lives if necessary without having to worry about anything being on their record or being "blackballed" by the insurance company later.
- Livingston, Montana (June 20-24, 2001) Elected President of DASN. Incorporated DASN in the State of Arizona as DASN International. Filed with the IRS and received 501 (c)(3) non-profit status. Helped establish new website and chat room. Was one of 9 Founding members of DASN who met in Kansas City in October of 2000 to officially organize DASN and was elected VP at that time. Continue to serve on board of directors but had to resign as President in May 2002 for personal reasons.
- Phoenix (September 3, 2002) Elected as Chairman of the HDSA Arizona Affiliate. Have served on our chapter's board of directors for the last 3 years.
- Have assisted approximately 20 others in beginning the live shark cell therapy that I have been on for 18 months now with continued improvements seen in all.
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:
- Listening to Persons with Dementia: Hearing their Voices (November 4, 2002) AD Society of Cambridge, Cambridge Ontario.
- I am Still Hear: Giving Voice and Giving Choice to Persons living with Dementia. (October 9, 2002). Huron County Alzheimer Society, Clinton Ontario. Interviewed by a reporter after the presentation and he asked about DASNI.
- Human Becoming Research, Education and Practice. DASNI mentioned in a talk I gave in Chicago (September 26, 2002)
- Listening to Persons with Dementia: Hearing their Voices (June 3, 2002) Presentation for the AD society of Ontario.
Researchers and Research Studies Facilitated through DASNI
- Jonas-Simpson, C. & Mitchell, G.J. What Life is like for Persons living with Early Onset Dementia: A Qualitative study.
- Clare, L. Self-help and mutual support among people with a diagnosis of dementia: the impact of participating in an internet-based support network.
- Harris, P. Early on-Set Memory Loss Study Tim Epp, Professor University of Waterloo: Participating in Finding Sponsorship for DASNI. Wrote a letter with Lynn Jackson to a potential donor for ongoing financial support to DASNI. Waiting to hear results of letter. Will followup with a phone call.
Director: Jeanne Lee-Advocacy
- Sorry none with the AD Assoc. Surely would like it to be different. Diagnosed with Alzheimer's in 1995 the same year began living on a soapbox. Began early stage group which grew from 3-9 in one month.
- Wrote a book "JUST LOVE ME" My Life Turned Upside-down By Alzheimer's available February 2003.
- Searched out, set up and performed lectures on early stages at hospitals, retirement communities, universities, nursing schools, churches, women's clubs, long term care insurance meetings, get togethers of anyone who might listen.
- Walked in Memory Walks and handed flyers on the subject and DASNI. Traveled to Montana and became a Board Member of DASNI. Sent many many letters of welcome and understanding to new members and newly diagnosed of DASNI.
- Traveled to Oregon, Washington State, Arizona and Utah with my message. Gathered information religiously from AD Associations all over the United States and Internationally to be aware of what should and could be happening at more Associations. Shared this two inch stack of organized prated material with two administrations of Hawaii Association.
- Wrote articles for various AD Newsletters and got all published except for Hawaii.
- Enjoyed interviews with two TV stations and 1 radio station and had three articles in local newspapers.
- Was invited to partake in Senior Fairs with Aricept for two years and this year alone when turned down by Hawaii AD Association
- Written letters of disappointment to our Senators in Washington, DC, Governors and Mayors and Public Servants here at home in Hawaii.
- I have applied for funding for an Alzheimer's Cafe began in the Netherlands and usually run with the help of AD Assoc. I will try it on my own with possibly the help of DASNI and volunteers. It is a place for early stage people and their loyal supporters to listen to lectures by, PWiDS (persons with dementia), Professionals, Pharmacists, Insurance specialists, Police, Attorneys, etc. It is a place to use computers to connect with a whole world of dementia persons to know we are not alone. A place to exercise, laugh, cry and go on outings together.
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.
- Drugs taken were: Cognex (1994) then Aricept for several years and then Exelon.
- Joe and Penny have participated for 8 years, in Early Alzheimer Patient Support groups, sponsored by the Alzheimer's Association.
- In the year 2000, Joe (and Penny, his care-partner), traveled to all of the 48 mainland states in the United States for 10 months, in an informal effort to educate the public about dementia. Highlight of the trip: Attending the 10 day Alzheimer World Congress 2000, in Washington, DC, in July, where Joe was featured on TV Evening News programs in 8 major cities across the United States, and appeared in several newspaper articles about "JOE'S QUEST, A Journey across America to find a cure for Alzheimer's." Along the way, they visited many people in nursing homes, facilities, and churches. Several radio stations carried news of Joe's Journey. They are in process of writing a book.
- In September, 2001, Joe was a participant in a three year experimental and investigational study to determine the potential beneficial effects of Omental Transposition, a surgery that involves a portion of the outer apron of the stomach to be transposed to the brain to increase blood flow to the brain. Positioned on the left side (language) to see if it would help Joe's language aphasia/apraxia (word-finding abilities). As part of Joe's rehab, he is involved in Speech Therapy.
- October 5, 2002, while attending the Alzheimer Memory Walk, Joe was interviewed by a local TV program: "Around and About Orange County News" and by Orange County Register Newspaper. Joe was introduced as a Board of Director of DASNI,(Dementia Advocacy Support Network, an Online Support group), and gave the web address, www.dasninternational.org. Joe and Penny have been a PWID/TAB team in DASNI Chat, for several years.