Notice of General Assembly

Notice is hereby given of the 10th General Assembly of the International Prader-Willi Syndrome Organisation (IPWSO). 

 

The venue will be the same conference centre as the international conference.

Venue:  The Theatre, Cojimar Conference Centre

Date:     Sunday 17 November, 2019

Time:     5.00pm

You are all warmly invited to attend.

Please note that country member delegates will have one vote (per country)

At this General Assembly voting will take place for:

  • the election of new board members

  • Re-election of standing board members

  • A vote for the next host country for IPWSO's 11th international conference.  

Minutes of previous GA

Agenda for 2019 GA

Draft Minutes of previous General Assembly can be seen here

The Agenda for this year's General Assembly can be downloaded here

Candidates for IPWSO Board

A slate of six new nominations have been accepted for the IPWSO Board.  Your country's delegate will vote to accept/or not accept this slate of nominations.  

Each fully subscribed country (see country membership) is eligible to vote.  This vote is given by the Parent Delegate at the General Assembly.  If the Parent Delegate is not able to attend this Assembly, he or she will give their proxy vote to another delegate from their country or to the IPWSO President who will vote on their behalf.

If you are not clear about any of the above proceedings, please contact us.

The six candidates are in no particular order followed by the 3 re-standing board members including the current President:

CRAIG MOORE (Australia)

B.A. (Hons), Dip. Rehab C., M. Soc. Admin. 

 

I have had over forty years working, in varying capacities, in the provision of welfare services to children and their families, particularly in statutory child protection and for people with disabilities. 

 

In 1997 I was awarded a Churchill Fellowship to research innovative practices in Child Welfare in Europe and North America.

 

Whilst trained as a Psychologist, I have managed a large district for the Department of Community Services (DoCS) at Liverpool.  

 

Since becoming CEO of Interaction the organisation has grown from a turnover of $6 million to $32 million and from 100 staff to 350 staff. While we provide services to people with an intellectual disability, the services we provide to people with Prader-Willi Syndrome (PWS) differentiate us from other service providers in Australia.  I am on the Boards of two Not For Profit organisations and two School Councils in Sydney.

MARIA LIBURA (Poland)

Maria has been, for the past 15 years, the president of the Polish Prader-Willi Association.  During this time, the association successfully cooperated with the Polish Ministry of Health and the Polish Society for Paediatric Endocrinology to establish the National PWS Treatment Programme, which was subsequently extended to adult care. She has a first-hand experience with living with PWS, being a mother of two girls, one of whom (now 17 years old) is diagnosed with this syndrome.

She is the Head of Medical Training and Simulation Center at Medical College of  University of Warmia and Mazury in Olsztyn, engaged in teaching clinical communication. She is also a vice-president of the Polish Society for Medical Communication, a founding member of Polish Personalized Medicine Coalition, as well as an expert of the Jagiellonian Club Analytical Center in the field of health and social care.

MARCELLO SCHUTZER (USA)

Marcello lives in Atlanta with his wife Andrea and his 2 daughters: Giulia, born in 2003 and diagnosed with PWS shortly after birth; and Nina, born in 2008.

Marcello has more than 30 years of experience in senior executive finance roles in leading multinational companies like PwC, Caterpillar, Procter & Gamble, A.T. Kearney and Bristol Myers Squibb. He is currently the Global Vice President for Financial Planning & Analysis at Novelis, the world leader in rolled aluminum products and recycling.

 

Marcello holds a degree in business administration from FGV in Brazil and an MBA with emphasis in Corporate Strategy and Finance from London Business School. He also participated in leadership development programs with the University of London and the Duke University in the UK, United States, China and Brazil. Marcello has served as a volunteer for Habitat for Humanity in rural India, in building day care facilities for poor children in Brazil and is currently a Board member of the Prader Willi Syndrome Association in Georgia, USA.

FRANCOIS BESNIER (France)

I am the  parent of three children. The eldest, Severine, with PWS, died in December 2017, aged 47 years. She was living in a residential home and had a full and happy life.

 

My professional background is mechanical engineer. During my career, as a scientific and technical manager, I have managed engineer teams and  was involved in European and international research projects. I was member of international research Committee and familiar with international partnership.  I am retired since 2007 and co-founder in 2017 of the OT4B start-up for the development of an oxytocin based treatment for PWS, working with teams and professionals in the pharmaceutical industry.

 

With seven other families we created the PWF in 1996. We are now about 800 members. I have been active in the association from the beginning and president for nine years. PWF is now a rather large association, gathering directly or indirectly more than half of the families of Prader-Willi syndrome children and well known by professional and politics in the field or rare disease and handicap.

 

I would bring to IPWSO a strong knowledge of staff training programmes for residential homes, and schools; translation skills - English to French -  a deep sense of understanding of different cultural and historical values in other countries, and  I am already in contact with several French-speaking countries in North-West Africa – an area which I know IPWSO is also involved with.

 

The death of my daughter left a terrible void in our lives, but my commitment to IPWSO is also my commitment to her.  She never gave up, nor will I!

LYNN GARRICK (USA)

Lynn Garrick is the mother of 5 children, including a 13 year old son with Prader-Willi syndrome.  She is a Registered nurse with over 25 years of experience.

 

Lynn has been the nursing supervisor for a large homecare organization, worked in a level 1 trauma hospital on the trauma and neurosurgery floors, provided care coordination for seniors with a county based health plan, and for the past 12 years has been the nurse consultant and program director with AME Community Services, Inc., which is a residential provider celebrating over 25 years in business serving adults and children with Prader- Willi syndrome.

 

In addition to her professional involvement with AME Community services Inc., She has been a board member of the Minnesota Prader- Willi Syndrome Association for the past 11 years. She has also been a new parent mentor for Prader-Willi syndrome association USA and has given presentations at both the national and international Prader-Willi conferences. She recently co-founded a not for profit organization where persons with disabilities can choose to find meaningful work in a farm and garden setting which was modeled after her recent trip to Germany for an IPWSO  conference.

KATE WOODCOCK (UK)

Dr Kate Anne Woodcock is a Senior Lecturer at the Centre for Applied Psychology in the School of Psychology at the University of Birmingham, UK.  Her research focuses on young people who face psychological and behavioural difficulties, often those linked to neuro-developmental disorder.  Several lines of her research focus specifically on individuals with Prader-Willi syndrome.  Kate’s work has examined factors that come together to precipitate behaviours that can be challenging for individuals with Prader-Willi syndrome, such as temper outbursts.  Her team is currently engaged in work that applies this knowledge to the development of intervention strategies.  For example, caregiver led behavioural support strategies, cognitive training intervention programmes, and early intervention strategies.

 

Kate carried out her PhD research at the University of Birmingham between 2005 and 2008.  Two years of her Postdoctoral Research were at Peking University, China between 2011 and 2013. Kate held a lectureship position at the School of Psychology, Queen’s University Belfast between 2014 and August 2017. During her time in China, Kate developed conversational skills in Mandarin Chinese and speaks to an advanced conversational level.  Before commencing her academic career, Kate spent time living in Tanzania, Guatemala, Bolivia and Argentina, engaged in work for a variety of non-governmental organisations, including Save the Children. During this time, Kate also developed her Spanish language skills and speaks Spanish fluently.  Kate has been a special educational needs link governor in a primary school in Birmingham, UK since September 2015.

Board members standing for second term

PRESIDENT

ANTHONY J. HOLLAND, MD, CBE (UK)

Health Foundation Chair in Learning Disabilities

Tony is a clinical and academic psychiatrist specialising in the field of intellectual disabilities. Since 2002 he has led the Cambridge Intellectual and Developmental Disabilities Research Group in the Department of Psychiatry at the University of Cambridge, UK. He has been the psychiatric advisor to PWSA UK and is now their Patron. With colleagues he has undertaken extensive research, particularly into the hyperphagia and the behavioural and mental health problems commonly associated with having PWS. His research has been published in academic and practice-based journals and he has been involved in the preparation of guidance for IPWSO and PWSA UK. He has attended all of the IPWSO International conferences and was one of the organisers for the IPWSO conference held in Cambridge in 2012. In 2015 he was awarded a CBE in the Queen's Birthday Honours List for services to psychiatry.

JAMES O'BRIEN (Australia)

Underscored by a powerful desire to maximize outcomes for all people living with PWS, James education, management and operating experience spans national and international charities, special school settings and disability services. 

Honed lateral thinking skills with proven ability to rapidly visualise alternative processes and solutions, coupled with his sense of fairness, compassion, integrity and respect for the opinions, skills and beliefs of others, has led to numerous volunteer appointments, including:

  • Director, International Prader-Willi Syndrome Organisation

  • Council Member, RADE Global Advocacy Leadership Council, Global Genes

  • President, Prader-Willi Syndrome Australia

  • Founding Director, PWS Better Living Foundation 

James’ love for his two children, including his son Ashley (26 yrs) living with PWS, drives his desire to establish PWS education, advocacy and support services across Australia and around the globe.

VERENA GUTMAN (Austria)

Educational Head of Department  responsible for the Educational Management of 100 youngsters from 14-20 years.  Also responsible for the formation of the Austrian PWS Association and  chairperson for 10 years. Verena was an auditor for IPWSO before joining the board.  She has a 29 year old daughter with PWS living in the  Regens Wagner Instiution in Absberg, Bavaria, Germany.

AMALIA BALART ( Chile) 

Amalia is a Teacher of English and Teacher for Special Needs.  Head of Junior Dept at The Newland School in Chile for the past 26 years and a graduate of  Master in Special Education, she has worked as Bilingual Therapist to help children with attention deficit disorder, learning disabilities and poor executive functions.  She is the mother of a 35 year old daughter with PWS.

Douglas House, 18b Trumpington Road, Cambridge

CB2 8AH. UK

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