International Alliance of ALSMND Associations

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International Alliance of ALS/MND Associations

• 13th Annual Meeting
• Burlington Hotel
• DUBLIN
• December 2005

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International Alliance of ALS/MND Associations

• Focus on what you can do. Dont cry over what
  you cannot do
• (Jens Harhoff Philadelphia 2004)
• We choose life. We are not dying. We are living
• (Gudjon Sigurdsson Dublin 2005)
• What would you do while you still could. Not,
  what could you not do
• (David Cameron ALS Society of Canada Dublin
  2005)

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International Alliance of ALS/MND Associations

• ATTENDANCE UP AGAIN !
• 69 Delegates /Observers (Last Year 66)
• Representing 20 Member Associations (50)
• Apart from floor questions, we received
  presentations / contributions from the Platform
  by representatives of the Associations of 15
  different countries on their experiences,
  challenges and successes
• Can this be further improved next year? Special
  consideration is to be given by the Board to ways
  in which the Alliance might, where necessary,
  provide assistance with the additional costs of
  attendance at next years event.

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International Alliance of ALS/MND Associations

• Welcome to her first annual meeting, our new
  Alliance Co-ordinator
• DONNA CORBETT

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International Alliance of ALS/MND Associations

• SUPPORT GRANT PANEL
• Half yearly meeting to Review Progress, to
  Consider New Applications and, in the light of
  the low uptake, to discuss the future of the
  Programme
• No new Grants considered or awarded on this
  occasion (last year 2 Mongolia and Yugoslavia).
  Current reserve 16,000.
• Suggestions for promoting and increasing the
  awareness and uptake of the Programme included
  possible amalgamation of Support and Travel
  Grant programmes to create a consolidated central
  resource for the general benefit and assistance
  of all member Associations (subject to agreement
  of the original donors, and appropriate
  amendments to the Terms of Reference).

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International Alliance of ALS/MND Associations

• BOARD OF DIRECTORS (1)
• All Day Meeting to Consider Statutory Annual
  Reports and Accounts, Formal Resolutions and
  Other Strategic and Policy Issues
• Recommended three new Directors for election to
  the Board
• David Cameron - Canada
• Dr Zorica Stevic Serbia and Montenegro
• Gudjon Sigurdsson - Iceland
• And re-election of Craig Stockton Scotland
• Thanks and good wishes to Eithne Frost, who has
  decided to stand down as a Director for personal
  reasons and to Paolo Bongioanni, who has
  completed his term as a Director, for his
  contribution to the Board particularly his
  leadership in the establishment and development
  of the Partnership Programme
• Considered amendments to the Constitution of the
  Alliance, regarding the rotation of Directors
  (both elected and co-opted) in order to ensure
  continuity, effective representation of the
  membership and good corporate governance.
  Following drafting and legal clearance, proposals
  will be made the membership during the coming
  year.

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International Alliance of ALS/MND Associations

• BOARD OF DIRECTORS (2)
• All Day Meeting to Consider Statutory Annual
  Reports and Accounts, Formal Resolutions and
  Other Strategic and Policy Issues
• Reviewed Application Process and Nomination
  Documentation required for the Humanitarian and
  Forbes Norris Awards
• Agreed No Change in Membership Subscriptions for
  2006
• Reviewed/Approved Annual Report and Statutory
  Financial Statements
• Reviewed Alliance Meetings Attendance / Costs
  and Programme
• Received Chairmans Annual Report
• Received Progress Report on Partnership Programme
  
• Noted Awards of Travel Grants / Bursaries
• Noted Report on Resource Library Significant
  Increase in Usage Statistics
• Reviewed / Updated Strategic Plan
• Received / Noted Quarterly Management Accounts
  and Treasurers Report
• Reviewed Papers and Programme for Alliance
  Meetings
• Received Website Report

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International Alliance of ALS/MND Associations

• DAY 1
• AGM Formal Business
• Rods First Annual Report as Chair
• THANK YOU FOR YOUR ENERGY AND COMMITMENT DURING
  YOUR FIRST YEAR IN POST !!
• The performance statistics speak for themselves

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International Alliance of ALS/MND Associations

• CHAIRs REPORT
• As presented in papers but highlighted
• Year of Challenge and New Direction
• 5 New Member Associations
• Significant increase in attendance at the APF
  350 people. Now a major event in its own right
• Growth in use of resource Library. 18 Major new
  ALS Documents added
• Membership-wide distribution of last years APF
  Presentations on DVD
• Encouraged member Associations to use the Annual
  Review (available electronically on website) to
  promote their own activities

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International Alliance of ALS/MND Associations

• ANDREWS TREASURERS REPORT
• Best year ever. Income of 86,600 (US 149,000
  Yen 17.8 m), exceeding last year by 9,000.
  Helped by receipt of Support Grant Funding.
  Expenditure down from last year by 1,000 at
  55,800. Surplus 30,799 (against last year
  15,400)
• Reserves now stand at 90,900. Compared with
  66,400 last year, and 10,250 in 2001
• Pleased to note no change in subscriptions for
  next year
• A very good story, reflecting effective and
  efficient way in which Andrew manages and
  accounts for the Alliances funds
• Gratifying to see gradual growth in reserves.
  Puts us in a strong financial position to develop
  the Alliances programmes, about which we have
  heard over the past two days.

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International Alliance of ALS/MND Associations

• OTHER AGM FORMALITIES
• Approved appointment of, and welcomed, new three
  new, and one re-elected, Directors
• Re-elected the Auditors
• Annual Membership Subscriptions Approved
  (unchanged)

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International Alliance of ALS/MND Associations

• YEAR IN REVIEW Rod Harris (Session Chair)
• Alliance Itself (Rod Harris)
• Focus on ways we can support those with MND/ALS
• Alliance does not provide home care, equipment,
  money but concentrates on facilitation,
  communication, information, network development
• Implementation of recommendations arising from
  last years meeting Global Day promoted on
  website, March of Faces Banner
• Growth of Resource Library
• Development of Partnership Programme FIRST
  MEETING OF NORDIC ALLIANCE this year
• Forbes Norris and Humanitarian Awards
• Support Grant Programme
• Strategic Plan
• Publication of last years Annual Meetings
  Summary, and APF Presentations, on website
• Submission to United nations on Dignity and
  Rights of ALS patients
• Three new Associate Member organisations
• Contact with 4 new countries

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International Alliance of ALS/MND Associations

• YEAR IN REVIEW Rod Harris (Session Chair)
• Denmark (Jens Harhoff)
• 2 Danish organisations
• Outdoor Green Concert (27,000 spectators)
• Childrens Event
• Structure and Activities of Rehabilitation Centre
  for Muscular Diseases
• Important work of ALS Consultants
• The wonderful work undertaken by Jens personally,
  in organising initiatives and projects for the
  benefit of PALS
• Switzerland (Lilo Piguet)
• Swiss French and Swiss Italian Associations
• History since foundation in 1977 (integration in
  2000 with Swiss ALS Association
• Great success of Swiss Telethon Foundation
• ASRIM today 850 members. 5 staff. Services to
  patients
• Supports all neuromuscular diseases not just
  ALS
• Involved in development of new equipment

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International Alliance of ALS/MND Associations

• YEAR IN REVIEW Rod Harris (Session Chair)
• ALSA (Sharon Matland)
• Mission, Successes, Achievements and Challenges
• Research (Bio markers, Lab Worms, Stem Cell
  Workshop)
• Patient Services (Clinical Research Grants)
• Advocacy (Enactment of Legislation waiving 24
  hour Medicare waiting period, 2 ALS specific
  congressional hearings)
• Development (Partnership with Wachovia Bank)
• Communications (TV spots reaching more than ½
  billion people. Website 1 million)
• Community Services (Fundraising, Education)
• Challenges to fill Black Holes around the
  country
• Iceland (Gudjon Sigurdson New Director of the
  Alliance)
• We Choose Life WE ARE NOT DYING WE ARE LIVING
• Need money, volunteers, people to trust us,
  goals
• Importance of the Internet. Home page is Window
  to the World
• Fundraising, Meetings, Helpline, Co-operation
  with other neurological associations

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International Alliance of ALS/MND Associations

• GLOBAL DAY Wendy Abrams (Session Chair)
• Alliance (Rod)
• In response to suggestion form Geoff Deitch last
  year, details of Global Day now posted on
  Alliance website
• Australia (Helen Sjardin-Howard)
• Awareness Week programme Poster, Cornflowers to
  Parliamentarians, National Education Forum,
  Luncheon, Media Releases, Wristbands NEVER
  GIVE UP
• National MND Conference
• Cornflowers for Politicians
• DVD of Public Services Announcement
• Spain (Teresa Salas)
• Professional Conference each year takes place
  in a different hospital. This year 120 attendees
• Media Coverage (including 2 TV Channels

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International Alliance of ALS/MND Associations

• GLOBAL DAY Wendy Abrams (Session Chair)
• Iceland (Gudjon Sigurdson)
• Aims Increase awareness, Have a Nice Time,
  Give Supporters Something Back
• Rented a house invited volunteers, media,
  professional teams 150 people
• Next year Get together, Be Happy, Smile
• New Project Poem in the Found (Book and CD
  Icelandic artists)
• Mexico (Victor Zuniga)
• Cognitive Treatment Course for Caregivers (20
  people)
• Electronic Magazine
• First national Symposium of Civil Societies
  Organisation against Neurodegenerative Disease
• Media activities. Special programme transmissions
• Global Day celebration event 70 people
• Social Investigation proposal
• Italy (Mario Melazzini)

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International Alliance of ALS/MND Associations

• Integration Between AILSA and Institution
• (ALS Advisory and Listening Centre)
• Dr. Mario Melazzini (AILSA)
• Update on AISLAs project to help PALS, their
  families and carers by bringing together in one
  place a range of disciplines, to analyse the
  needs, and provide care, support and treatment.
  As first reported at last years Alliance
• A very interesting and positive step forward in
  the provision of such care and support, because,
  although other models exist, in a number of
  countries, for multi-disciplinary clinics and
  care centres
• What differentiates this Italian one is that the
  personnel are all professionals in their field of
  expertise, but giving their services voluntarily
• Dr. Melazzinis presentation also highlighted the
  need for well structured communication between
  PALS, their families, care-givers, medical
  practitioners and therapists
• Has now expanded throughout Italy. 1600 calls to
  date. Most requested need referral to Centre,
  where people can obtain clear and specific
  answers and information

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International Alliance of ALS/MND Associations

• Dr. Melazzini concluded by quoting
• Patch Adams
• When you treat a DISEASE, you win or lose
• When you treat a PATIENT, you always win

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International Alliance of ALS/MND Associations
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International Alliance of ALS/MND Associations

• FUND RAISING
• Walks
• David Cameron
• ALS Society Canada Walk for ALS Hike4ALS
• ALS Canada and 10 regional partners (all separate
  charities)
• Explained strategic planning and organisation
• Gross Revenue 2005 - C 1.75 million. Of which
  C630,000 allocated to Research and C945,000 to
  Client Services
• Total of C7 million raised since 1999
• Focus on how ALS co-ordinates branding and
  production of resources centrally, but providing
  for local flexibility
• 2005 13,000 participants in 10 provinces
  walking in 64 locations

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International Alliance of ALS/MND Associations

• FUND RAISING
• Walks
• Sharon Matland
• ALSA Walk to DFeet ALS - update
• 2005 150 walks, raising a total of US10
  million
• Rod Harris
• Alliance Global Walk
• Exhibited Pack and CD containing necessary
  resources
• Another Alliance Product Kit drawing on the
  experience of the many existing Associations
  already organising Walks and other sporting
  challenges

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International Alliance of ALS/MND Associations

• THE WAY FORWARD
• Rod Harris
• Update on results of last years workshop on
  future projects and plans for the Alliance
• More presenters
• Encouraging exchanges between Associations
• Optimise use of Travel Grants
• March of Faces Banner
• Standards of Care
• Patients Rights
• A key issue further addressed in the past year
  has been the subject of Advanced Directives

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International Alliance of ALS/MND Associations

• Study on the Use of Advanced Directives
• Mr. Kimiaki Kanazawa
• (Managing Director JALSA)

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International Alliance of ALS/MND Associations

• The issue 7000 PALS in Japan. 25 in hospital.
  75 receiving home care. 30 of total are on
  respirators
• Advance Directives are still a challenge
  regarding the care a PALS wishes to receive (or
  not receive) should become unconscious or
  otherwise unable to communicate
• JALSA conducted a study on this subject. Issued
  questionnaires to 1000 patients and family
  members
• It was acknowledged that the reported results of
  the study would be crucial for medical decision
  making.
• The study addressed Merits of AD, Content and
  Method of Documenting
• 300 respondents. Average age 66 years old
• 80 received home care. 67 were male
• Merits self-determination of patient is
  specified and shared. Communication with family
  is shared
• Results were only analysed for patients who HAVE
  given ADs. Further analytical work on the survey
  is required for the development of ethical and
  medical policies in the case of this who HAVE NOT
  yet given ADs
• Results of additional study, and a further survey
  amongst Doctors and other professional
  practitioners, will be announced next year in
  Japan
• (During questions, it was pointed out that ADs
  are not restricted to those with a disease or
  condition. It is open to anyone to prepare an AD
  in those jurisdictions where they are legally
  enforceable)

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International Alliance of ALS/MND Associations

• WORKSHOP
• Advanced Directives
• Questions to be answered
• What is the current legal position in each
  country regarding patients rights to refuse
  treatment or have treatment withdrawn ?
• Do we believe that we should support patients
  rights to be fully informed about their
  diagnosis, its impact on their life and the
  impact on any treatment or intervention ?
• Should the Alliance have a policy on the rights
  of patients in relation to diagnosis, treatments
  and interventions, and the right to refuse or
  have treatment withdrawn

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International Alliance of ALS/MND Associations

• WORKSHOP
• Advanced Directives
• Answers / Conclusions
• In Northern and Southern Europe, countries have
  similar policies and it is legally possible to
  refuse treatment or have treatment withdrawn. ADs
  would be honoured. In Americas, patients rights
  and autonomy are respected but decision must be
  based on proper education and information. There
  must not be any undue influence from Doctors or
  professionals. Family must be included in
  process. In Asia Pacific, legal situation varies.
  ADs are available, but not always enforceable
• All groups believed that the Alliance should
  support patients rights to be fully informed
  about their diagnosis and its impact, as long as
  supported by full information
• There was general support for the proposition
  that the Alliance should develop a position on
  this subject but it must respect national and
  cultural constraints. The right of the patient to
  make own decision is paramount. Alliance should
  not define the policy. Its position should be
  that it encourages ADs, with due acknowledgement
  of local and cultural issues. There must be care
  over the choice of words. There is a legal
  difference between a Living Will and an
  Advance Directive, as to the level of
  enforceability.
• Further work on this subject to be undertaken by
  the Alliance during the coming year

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International Alliance of ALS/MND Associations

• WEBSITE UPDATE
• Rod Harris
• Great progress. 42,000 visits to the site since
  Philadelphia
• 8,500 visits to 3 or more pages
• Popular Views Professor Tsais paper on
  Alternative Medicines, Summary of Last Years
  Alliance Meetings and the Presentation Slides
  from last years APF, Links to other relevant
  sites and organisations
• Going forward
• Need to identify new Chair of Web Committee
• Consider the possibility of including recorded
  sound interviews
• Seek ideas from the membership as to other
  contributions /resources to be included on the
  sight

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International Alliance of ALS/MND Associations

• RESOURCE LIBRARY
• Craig Stockton
• Reminded us of History and Aims
• The Library supports the objectives, and is
  consistent with the aspirations, of the Alliance
• Demonstrated Home Page and highlighted key
  activity over the past 12 months
• Including the implementation of the Open Access
  policy agreed last year
• 38 new publications have been added (of which 17
  are of the What is MND/ALS variety)
• There are now some 150 publications available in
  the Library
• In the past year, there were 83,500 hits. In
  the whole of 2004, there were 6000 sessions. In
  the period to November 205, there was a fivefold
  increase to 29,500 sessions (of which 40 were of
  5 minutes duration or longer
• 87 countries have accessed the site (including
  many where there is no Alliance Member
  Association)

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International Alliance of ALS/MND Associations

• SUPPORT GRANT
• Alan Graham
• Summarised background and history of programme
• Since the beginning of the programme, awards have
  been made to Moldavia, Turkey, South Africa, New
  Zealand, Yugoslavia, Mongolia, Mexico
• Since appeal at last years conference, new
  funding has come from Scotland, Australia,
  Ireland and Japan
• Total funding to date 30,000. Total grants made
  to date 10,815
• Allowing for future committed receipts and
  payments, total funds available for grants
  amounts to 16,800 (US28,500)
• Board and Panel looking at possibility of
  widening scope of programme and combining with
  Travel Grants to offer more flexibility to
  applicants (for example to assist travel
  between Partnership countries). Subject to
  agreement of donors, and revised application
  process
• Meanwhile, more donations encouraged and more
  applicants for assistance sought from prospective
  new member countries and existing Associations
• Very satisfactory and gratifying progress.
  However, must not be complacent

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International Alliance of ALS/MND Associations

• SUPPORT GRANT
• Alan Graham
• Louise Rees New Zealand
• Reported on the benefits obtained by her
  Association from the grant received. Provided
  seed funding and breathing space to allow
  time for further funding to be sought and
  strategic planning to take place. Used to improve
  office systems, information available to PALS and
  to lighten the burden on local branches.
• Has led to a more rational and efficient
  organisation, able to provide better support and
  information .

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International Alliance of ALS/MND Associations

• SUPPORT GRANT
• Alan Graham
• Zorica Stevic Yugoslav MND Association
• Reported on the benefits obtained by her
  Association from the grant received.
• Used to purchase computer equipment to allow
  development of a Database in order to build a
  register of the MND/ALS population. Now have full
  records on all patients within the Belgrade area,
  which confirmed suspected increase in prevalence.
• New Database will assist in future organisation
  and enable provision of appropriate care. Leading
  to improved QOL. Will also facilitate development
  of relevant multidisciplinary teams.

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International Alliance of ALS/MND Associations

• ALS Society of Canada
• Public Service Announcements
• David Cameron
• Creation of two significant campaigns in
  collaboration with two PR firms, who provided
  services on a Pro Bono basis.
• Part of a wider public awareness campaign. Both
  for its own sake, and to enhance ability to raise
  funds.
• Six months development
• What would you do while you still could ?
• Produced in French and English
• Aired free on 3 TV networks, and appeared in
  print advertisements on transport systems
• Highly successful campaign. Value of contributed
  creative work, and advertising space and time,
  amounted to hundreds of thousands of dollars
• Proved value of personal connections and
  in-kind donations
• (Similar example in England, Wales and NI
  Johns Journey)

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International Alliance of ALS/MND Associations

• DAY 2

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International Alliance of ALS/MND Associations

• Partnership Programme
• Paolo Bongioanni
• (outgoing Director !)
• Provided Historical Overview. Explained
  geographic distribution of regional groupings and
  purpose of the programme
• Reported on activities, and successes and
  achievements of past year.
• Northern Europe E.Mail campaign to lobby UK
  politicians. Nordic Conference in September
• Southern Europe Visit of Kathy Mitchell to
  Yugoslavia Association. Development of
  partnership between Spain and Peru
• Americas ALS Nursing Workshop Funded by Les
  Turner Foundation and others
• Australasia Contacts/visit (May) between Taiwan
  and Japan. Involved 29 patients and 43 carers.
  Continued contact between New Zealand and
  Australia. One-day National Conference on Care
  and Management on Global Day

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International Alliance of ALS/MND Associations

• Partnership Programme
• Paolo Bongioanni
• (outgoing Director !)
• THE NORDIC MEETING Jens Harhoff
• Involved Finland, Sweden, Denmark, Iceland and
  Norway. 3 Days, including presentations from each
  Association. Programme also allowed for social
  contact. Subject of practical issues relating to
  use of respirators was high on the Agenda.
• Looked at current and future issues facing
  countries in this grouping. Improvements to
  treatment. Creation of website etc.
• Have agreed to establish annual meeting
  probably in the Autumn with the venue rotating
  between the participant countries.
• Gudjon appointed first Chairman.

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International Alliance of ALS/MND Associations

• Partnership Programme
• Paolo Bongioanni
• (outgoing Director !)
• WORKSHOP
• Theme PALS Support at Home
• Questions
• What mechanisms are available to assist people to
  remain at home ?
• What can we do to influence these mechanisms, so
  that they are available for very person with
  ALS/MND ?
• How can we ensure that peoples choices are
  supported by effective and efficient services ?

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International Alliance of ALS/MND Associations

• Partnership Programme
• Paolo Bongioanni
• (outgoing Director !)
• WORKSHOP
• Theme PALS Support at Home
• Conclusions
• Mechanisms available for people to remain at home
  varies greatly according to geography and
  economic circumstances. However, whatever help is
  available, is only effective if there is also
  family support. Some countries (Iceland) take
  full responsibility. Elsewhere, it is partial or
  a mixture of provision between State Assistance
  and Private or Public Insurance Arrangements.
  Distribution is uneven, particularly in more
  remote areas. Even where support is available, it
  does not follow that it will be obtained
  because of obstacles placed by the agencies.
• We can influence by providing people who are
  familiar with application systems. How to get
  things done. Which departments need to be
  contacted. And who can pass on this knowledge.
  Associations should consider funding local
  positions. Influencing and advocacy.
  Collaboration / Partnerships with other
  neurological support organisations.
• The Alliance should produce documents/statement
  regarding patients rights/choice to remain at
  home (in consultation with patients). This can
  then be adapted to local circumstances and
  criteria. Make governments aware. Establish
  communication with supra-national agencies (e.g.
  WHO)

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International Alliance of ALS/MND Associations

• Kathy Mitchell
• International Collaboration for Health Care
  Education
• Education initiatives in Serbia and Peru
• 2nd Trip to Serbia
• Aim to increase knowledge of ALS, increase
  awareness and facilitate access to funding
• Support from Canada
• Outreach to 500 health care professionals. Focus
  on disease process NI Ventilation and Palliative
  Care.
• Created collaboration with University Medical
  School
• Potential Visited Madrid. Home visits. Visited
  Peru to present course in conjunction with
  Peruvian Neurological Meeting.
• Ongoing access to Canadian Government funding

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International Alliance of ALS/MND Associations

• Zorica Stevic
• Visit of Kathy Mitchell to Yugoslavia
• Gave lectures in Belgrade and other important
  clinical centres
• Discussions with Health Care Professionals
• Global Day meeting with Canadian Ambassador
  resulting in grant to purchase Cough Machine
• Such equipment will substantially improve quality
  of life and welfare

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International Alliance of ALS/MND Associations

• Brian Dickie
• Hope or Hype ?
• Separating the Science from the Scandal
• Need to deal with the ethical issues, and for
  Associations to develop a formal policy
  (consistent with legal position and scientific
  validity)
• Explained Stem Cells
• How they can be used in diagnostics and research
• Potential to generate human Motor Neurones for
  laboratory research and thus ability to screen
  multitudes of compounds
• Explained and gave examples of, practical
  applications and rationale
• Caution of Governments to grant licences for
  cloning
• Raises considerable ethical and moral debate, but
  there is also a real potential value in such
  research
• Korean case, Human Cloning

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International Alliance of ALS/MND Associations

• 13th Annual Meeting
• DUBLIN

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International Alliance of ALS/MND Associations

• See you at ..

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International Alliance of ALS/MND Associations

• 14th Annual Meeting
• in
• YOKOHAMA

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International Alliance of ALS/MND Associations

• Focus on what you can do. Dont cry over what
  you cannot do
• (Jens Harhoff Philadelphia 2004)
• We choose life. We are not dying. We are living
• (Gudjon Sigurdsson Dublin 2005)
• What would you do while you still could. Not,
  what could you not do
• (David Cameron ALS Society of Canada Dublin
  2005)