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Monday 8 October, 2007 - Stresa, Italy

08.15 Registration
09.00 Welcome and introduction of all delegates President, Stephen Pickard (Belgium)
0905 Introduction of Charitable union of Parkinsonian Patients of Georgia (new member) Vice president, Eka Popkhadze (Georgia)
09.15 Update on EPDA website Chiu Man (UK)
09.25 Q & A  
09.30 Business Meeting
  Annual Report 2006 and President’s Report 2007 Stephen Pickard
  Adoption of EPDA & PDI 2006 audited report and accounts
  Confirmation of appointment of accountant M J Reid & Co for 2008
  Treasurer’s Report and 2008 Forecast Budget Branko Šmid (Slovenia)
  Elections (independent chair) Kurt Meier (Switzerland)
10.35 Coffee Break
11.05 European Survey - discussion Kate Browne (UK)
11.50 Working in partnership - discussion forum Kurt Meier Swiss PD Association
12.50 Presentation: Nutritional Therapy and the Dopamine Connection Lucille Leader (UK)
13.10 Q & A  
13.15 Meeting closes Stephen Pickard
13.20 Lunch
1515 Meet in the Grand Hotel Bristol foyer for Island Boat trip

Speaker abstract

Lucille Leader

Lucille Leader Dip ION MBANT

Nutrition Director, Parkinson’s Disease Management Clinic,
Highgate Hospital, London, UK
Lecturer School of Integrated Medicine, Westminster University, London, UK

Presentation: Nutritional Therapy and the Dopamine Connection

Dopamine is metabolised from dietary protein.  The metabolic steps from protein to dopamine and further on to adrenaline are dependent on numerous enzymes. These enzymes are themselves dependent on essential coenzymes (specific vitamins and minerals). 

Metabolism is dependent on cell energy (the citric acid (Krebs) cycle) and the energy currency (adenosine tri-phosphate (ATP)) generated by this cycle, depends on particular macro and micronutrients.

Stress tends to compromise dopamine production and encourages increased production of adrenaline. This in turn requires specific nutrients to support the functions of the adrenal medulla and cortex.

Bowel function is dependent on adequate dietary manipulation. Constipation and diarrhoea can affect absorption of essential nutrients and drugs, affecting dopamine levels. Digestive enzymes influence dopamine metabolism and the degree of permeability of the intestinal mucosa affects functional health.

Biochemical tests to assess cell status should be offered to all patients with neurodegenerative disease. This would facilitate the choice of a more targeted therapy.

Avoiding competitive drug - nutrient interaction in the diet (L-dopa with the “neutral” amino acids in particular foods) may optimise absorption and efficacy of L-dopa.

QED: Nutritional therapy takes all the above aspects into consideration and makes recommendations based on each patient’s biochemical individuality. It would then seem logical to include this modality in the multidisciplinary management of people with Parkinson’s Disease.

Speaker profile

Nutritional Therapist, Lucille Leader, is the Nutrition Director of the Parkinson’s Disease Management Clinic at The Highgate Hospital in London, UK. This clinic, under the medical directorship of Dr Geoffrey Leader, was an early pioneer in the multidisciplinary approach to the management of chronic illness. She specialises in biochemically-based nutritional support of patients with chronic disease.

Lucille Leader lectures at Westminster University, London, has delivered papers at congresses internationally on nutrition in Parkinson’s Disease, has published in journals and received a “Quality of Life Award for Parkinson’s” in The United States in 2004.

She has co-authored and edited successful books on

Parkinson’s Disease (see www.denorpress.com)

  • Parkinson’s Disease – Reducing Symptoms with Nutrition and Drugs

    Geoffrey Leader and Lucille Leader

  • Parkinson’s Disease – The Way Forward!

    Dr Geoffrey Leader, Lucille Leader et al

  • Parkinson’s Disease - The New Nutritional Handbook

    Dr Geoffrey Leader and Lucille Leader

  • Morbo Di Parkinson - Suggerimenti Nutrizionali

    Dr Geoffrey Leader and Lucille Leader with Professors Aroldo Rossi and Lia Rossi Prosperi


Royal Society of Medicine, London, British Association of Nutritional Therapists, British Society of Ecological Medicine.


Minutes of General Assembly 2006: Slovenia 01 October 2006

  • Welcome
  • Presentations throughout the day
  • What has the Membership gained from the EPDA in 2006?
  • Confirmation of the Agenda
  • General Assembly Minutes,Dublin, Ireland 2005
  • Matters Arising from the Minutes
  • Annual Report 2005 and President’s Update for 2006:
  • Treasurer’s Report and Forecast Budget – 2007
  • Acceptance of Auditor’s Report and Accounts for EPDA & PDI Ltd 2005
  • Appointment of Auditors for EPDA & PDI Ltd, M J Read & Co, for a further two years
  • Business Plan and Mission Statement
  • Proposal from Ireland
  • EPDA 7th Multidisciplinary conference, Italy 2007
  • Any Other Business and General Discussion


The President, Mary Baker, on behalf of the Board extended a very warm welcome to the Official Delegates, Accompanying persons and guests including John Bowis, OBE MEP and John Walker, both EPDA Patrons and Karin Willemse from South Africa Parkinson’s Association.

She officially opened the meeting and thanked everyone for such a special surprise retirement party the evening before, and said that it had been a most memorable evening for her and her husband Bob.

The Official Delegates were introduced and a special welcome extended to representatives from Hungary and Poland who were attending the General Assembly for the first time since becoming members in 2006.

Presentations throughout the day

  • The EPDA 1992 – 2006 Mary Baker
  • Does Parkinson’s have an influence on sexual functioning? Jesse Verschuren, Belgium
  • EPDA Website including Rewrite Tomorrow & Coping Strategies Chiu Man & Mariella Graziano

All were followed by questions and discussion.

What has the Membership gained from the EPDA in 2006?

The President highlighted the many projects and activities that the EPDA had worked on in 2006 and stressed that without the partnership of the pharmaceutical industry the membership would not have benefitted from resources, all free of charge, such as:

  • Rewrite Tomorrow (Partner: Medtronic Europe)
  • Living with Parkinson’s Disease (a series of films) (Partners: Norwegian PD Organisation and Solvay Pharmaceuticals)
  • Patients’ Guide to Parkinson’s and its treatment - Book (Partners: Lundbeck & Teva)
  • Patients’ Guide Website (Partners: Lundbeck & Teva)
  • EPDA Publications: EPNN Journal & EPDA Plus (Partners: Britannia Pharmaceuticals, SCHAWRZ PHARMA , Novartis and Orion)

Whilst stressing the importance of and encouraging partnership with the pharmaceutical industry, the President also reinforced the importance of transparency. As such, the EPDA had developed a ‘Code of Practice’ which was freely available via the EPDA website and hoped that this document would prove of use to the membership as a whole when working with the industry.

Magne Wang Fredriksen, complimented the EPDA and especially Chiu Man for the EPDA website development and requested that the membership be notified on a regular basis, of the new additions and resources.

It was agreed that a monthly alert be sent to all members advising of any updates.

Confirmation of the Agenda

The proposed Agenda was agreed unanimously.

General Assembly Minutes, Dublin, Ireland 2005

The minutes of this meeting were agreed unanimously as being a true record. Louise van der Valk, the Netherlands proposed acceptance.

Unanimously accepted

Matters Arising from the Minutes

There were no Matters Arising.

Annual Report 2005 and President’s Update for 2006

The President referred to the annual report 2005 that included the EPDA Financial Report (Consolidated Income and Expenditure Account and the Consolidated Balance sheet).

The Annual Report and President’s report, included in the Delegate packs reflected the work of the EPDA Board throughout 2006 to date and she fully acknowledged the hard work and commitment of the Board, Stephen Pickard, Legal Advisor and the Administrative Team of Lizzie Graham, Secretary Graham, Chiu Man, IT Manager and Carolyn Loveless, Liaison. She complimented Dominic Graham for designing such an excellent Annual Report.

The President highlighted the following events, all focussing on enhancing the PD profile around the world.

  • World PD Day events and the signing of the Declaration at World PD Day in South Africa by Archbishop Desmond Tutu
  • The closer alliance with the pharmaceutical industry, without whom the EPDA could not continue to develop its work programme and projects
  • New EPDA Members: Delta Parkinson Egyesület, Hungary and Asociatia Antiparkinson, Romania
  • The continued development of the EPDA website that has become a major international resource
  • Project development including UK Community Pharmacy Medicines Support Pilot in PD, PD Med, High Quality Nursing Care for International PWP and the Patient Decision Aid which was in its initial stage
  • The great success of the Euroyapmeet Conference in Dublin and the multidisciplinary conference in Slovenia held this weekend.

The President, before retiring after 14 years in office, thanked the many friends that she had worked with throughout the year including Lydia Schiratzki, Switzerland who was due to retire from the Swiss Association later in the year.

She presented EPDA Certificates Recognition to Ingemar Bruto, Sweden EPDA Founder member and Past Vice President, and Raphael Medan, Israel, Past Treasurer in recognition and appreciation of their significant contribution towards the development of the EPDA and its membership.

Following presentation of gifts from many of the members and a certificate from the EPDA, she expressed her delight with the success of the EPDA and thanked the Board, the membership and the Administrative Team for the support and friendship she had received throughout the years.

The appointment of Stephen Pickard as Interim President for one year until the 2007 elections took place was approved by the delegates.

Treasurer’s Report and Forecast Budget – 2007

The Treasurer presented his report outlining a satisfactory financial year in 2006, confirming that each year the EPDA becomes financially stronger, thanks to the partnership of the pharmaceutical industry and other corporate organisations who provide the core-funding required annually, without which the EPDA would cease to exist. He stated that they are partners in every sense of the word, participating in project discussions and providing much needed resources.

He commented that the forecast budget for 2007 showed an estimated shortfall of £12,519 (an improvement of £28,481 on the shortfall of 2006) and confirmed the confidence of the Board that this would be met by membership fees and partnership funding. 

Both reports were unanimously accepted

Acceptance of Auditor’s Report and Accounts for EPDA & PDI Ltd 2005

Acceptance of the 2005 accounts for EPDA and PDI were proposed.

Unanimously accepted

Appointment of Auditors for EPDA & PDI Ltd, M J Read & Co, for a further two years

Unanimously accepted

Business Plan and Mission Statement

The draft Business Plan, presented by Stephen Pickard was discussed by the delegates and the Mission Statement confirmed as follows:

To ease the lives of people with Parkinson’s disease and their families and carers by promoting a constructive dialogue between science and society, and by encouraging and supporting the development of national PD organisations.

It was agreed that any suggestions for change be forwarded to Lizzie Graham by the end of October at the latest, so that the Business Plan could be finalised and added to the EPDA Website.

Proposal from Ireland

The Vice President presented a discussion document submitted by Una Anderson-Ryan, Parkinson’s Association of Ireland about her concern for lost opportunities at the World Parkinson’s Congress concerning constructive exchange of ideas between Patient Associations.

It was agreed that closer collaboration between associations should be developed, and was one of the EPDA’s objectives in their Business Plan. Ways as to how this could be achieved would be considered by the EPDA Board in the forthcoming year.

EPDA 7th Multidisciplinary Conference, Italy 2007

Italian Representatives Maria Valeria Levi Della Vida Germini (Azioni Parkinson) and Lucilla Bossi (Parkinson Italia) expressed their concern about the EPDA announcement that there 2007 conference would be held in Italy in 2007, as they were unaware of this. The Board apologised for this error confirming that discussions had taken place with some Italian neurologists in 2005 who had expressed a wish that the EPDA hold an annual conference and General Assembly in Italy.

Due to a misunderstanding, they had assumed wrongly, that the Italian Federation were aware of these discussions and proposal.

It was agreed that this was a valuable lesson for the future and no agreement would be taken to hold an event of this kind without first obtaining written confirmation from the patient organisation concerned.

Any Other Business and General Discussion

Professor Zvedan Pirtosek, on behalf of Trepetlika (Parkinson's Disease Society of Slovenia) thanked the EPDA and specifically Mary Baker, for all that had been achieved throughout the last 15 years in closing the gap between doctors and patients. It had achieved greatly in enhancing quality of life. Tom Isaacs, EPDA Youngonset representative, supported this statement.



Monday 8 October, 2007 - Stresa, Italy

The existing Board have worked exceedingly hard in the last two years to provide an organisation that meets the needs of its membership. As a result, the EPDA is well known and highly respected throughout Europe and internationally. It is a committed, vibrant, and energetic organisation and requires a committed and energetic Board.

Therefore the Board welcomes nominations from enthusiastic people who are familiar with and have participated in the work of the EPDA. They can be either a person with Parkinson’s, carer or healthcare professional and it is hoped that nominations will reflect the geographic spread of the EPDA.

The Board has, to date, received the following nominations, which they fully support for a further Term of Office:

  • Stephen Pickard, Belgium - President
  • Susanna Lindvall, Sweden - Vice President
  • Mariella Graziano, Luxembourg - Secretary
  • Branko Šmid, Slovenia - Treasurer
  • Knut-Johan Onarheim, Norway - Member
  • Tom Isaacs, UK - Young Onset Representative

The Board have also received the following nomination, which they fully support:

  • Mahendra Gonsalkorale, UK - Member

The Board requires the support and interest of you all and welcomes further nominations for the following positions:

  • President
  • Vice President
  • Treasurer
  • Secretary
  • Member
  • Young Onset representative


  • Organisations can nominate people from another country for a position on the Board.
  • Another country/organisation can support any nomination.
  • All nominations are to be made in writing and to be accompanied by a biography (or CV) and picture, and emailed to Lizzie Graham no later than Friday 22 June, 2007.