Conference Programme

6th International Prader-Willi Syndrome Caregivers’ Conference

PDFs of all presentations are linked where permission is given by the speaker. Note that for workshop presentations the PDF is linked under the speaker’s name.

Summaries of the Workshops are also available and are linked from this page. 

Day 1 | Tuesday 21 May

09:00 – 09:30 Opening and welcome Dr Andreas Eckhoff, CEO of EJF gemeinnützige AG, Germany, Lynn Garrick, Chair of the IPWSO Professional Providers and Caregivers Board (PPCB), USA, Hubert Soyer, PPCB Member, Germany and Tony Holland, IPWSO President, University of Cambridge UK

09:30 – 09:45 Thank you caregivers! Video of thanks from people receiving PWS care around the world.

09:45 – 10:15 Pam Eisen Lecture: The future of care for people with PWS Norbert Hödebeck-Stuntebeck, PhD, PWS-InterNational, Germany

10:15 – 10:45 Break

10:45 – 11:15 IPWSO’s initiative to give people with PWS a voice Svetlana Labun, Managing Director, EJF Hollerhaus gGmbH, Trustee, IPWSO, Germany

Give people with PWS a voice: Requirements and solutions (example of a group in Germany) Christian Blohm, Metalworker, Germany

11:15 – 11:30 Outcomes for persons with Prader-Willi syndrome in full-time services: Findings from international archival data and future research directions Brian Hughes, Professor of Psychology, University of Galway, Ireland

11:30 – 11:45 Operationalised list of infrastructure and staff skills required for specialised care of PWS as rated by residential care providers in the USA Janice Forster, MD, Board Certified General and Child and Adolescent Psychiatrist in private practice in Pittsburgh PA, USA

11:45 – 12:00 Service involvement for children seen in the specialist PWS child mental health service in UK: Supporting a multi-agency approach to food security and wellbeing (and how restrictions can be liberating) Dr Sarah Carman, National and Specialist CAMHS Specialist Prader Willi Syndrome Service, Mental Health of Intellectual Disabilities Team, SCAAND, Michael Rutter Centre, South London and Maudsley NHS Foundation Trust, UK

12:00 – 12:15 Introduction to the poster presentations and afternoon workshops Laura Keane, Co- Chair of the IPWSO Professional Providers and Caregivers Board, Chief Executive, Resilience Healthcare, Ireland

12:15 – 13:15 Lunch Break

13:15 – 13:45 Poster presentations

Moderated by: Laura Keane, Chief Executive, Resilience Healthcare, Ireland

13:45 – 15: 30 1st workshops begin. Choose between:

          1. Therapy options: Art and ABA Leaders: Tovi Florsheim, Israel and Vikacha Phiri, USA

          2. Balancing rights and restrictions for individuals with PWS Leaders: Hubert Soyer, Germany, Gary Brennan, Ireland, Johannes Fuhrmann, Germany and Lynn Garrick, USA

          3. Friends, partnerships and sexuality Leaders: Patrice Carroll, USA and Neil Gumley, Australia

          4. Understanding behaviour Leaders: Norbert Hödebeck-Stuntebeck (Wellbeing Presentation | Behaviour Analysis Presentation | WAIS-IV Presentation), Germany and Tony Holland, UK (Click here for Observation Sheet.)

Summaries of the Workshops are also available.

15:30 – 16:00 Break

16:00 – 17:45 1st workshops continue

17:45 End of day

Day 2 | Wednesday 22 May

09:00 – 10:30 First workshops continue. Concluding session.

10:30 – 11:00 Break

11:00 – 11:30 Overview of the Clinical Trials process Nathalie Kayadjanian, Ph.D. Scientific advisor, Raymond A. Wood Foundation, USA

11:30 – 12:30 Research and Clinical Trials Updates June Sanson, Executive Director of Patient Advocacy & industry Relations, Acadia Pharmaceuticals, USA | Santiago Figueroa Pérez, COO Palobiofarma, Spain |  Dr. Dairine Dempsey, VP, Europe, Soleno Therapeutics Inc., Ireland

Moderated by: Tony Holland, IPWSO President, University of Cambridge UK

12:30 – 13:30 Lunch Break

13:30 – 15:15 Second workshops begin. Choose between:

          1. Ageing Leaders: Susanne Blichfeldt and Larry Genstil

          2. Staff retention: and what happens when there’s a breakdown? Leaders: Lynn Garrick and Claire Poor-Harmon, USA (Click here for worksheet.)

          3. Friends, partnerships and sexuality (repeated) Leaders: Patrice Carroll, USA and Neil Gumley, Australia

          4. Understanding behaviour (repeated) Leaders: Norbert Hödebeck-Stuntebeck (Wellbeing Presentation | Behaviour Analysis Presentation | WAIS-IV Presentation), Germany and Tony Holland, UK (Click here for Observation Sheet.)

Summaries of the Workshops are also available.

15:15 – 15:45 Break

15:45 – 17:00 Second workshops continue

17:30 – 19:00 Break

19:00 – 23:00 Conference Dinner

Day 3 | Thursday 23 May

09:00 – 10:30 Second workshops continue. Concluding session.

10:30 – 11:00 Break

11:00 – 11:30 Meaningful Employment for people with PWS Larry Genstil, Psychologist, Genstil Institute of Human Behaviour, Israel

11:30 – 11:45 Network Switzerland Bastian Bühler, Social educator/Team leader, Stiftung Arkadis, Switzerland

11:45 – 12:00 PWS Competence Center Austria Janine Sinner, Team Leader, Caritas Oberösterreich, Austria

12:00 – 13:30 Lunch Break

13:30 – 14:15 Panel discussion: Self-determination, self-control: Opportunities and limitations Lee Chamberlain, VP & Chief Strategy Officer, Latham Centers, Inc., USA | Maria Kirby, Clinical Services Manager, Resilience Healthcare, Ireland | Fred Nikolai, Chairman Prader-Willi Stichting, The Netherlands | Michelle Torbert, President, Friends of IPWSO (USA), USA

Moderated by: Hubert Soyer, Psychologist, Germany

14:15 – 15:00 Questions and Answers: Your medical questions David M. Agarwal, MD, FSIR, Indiana University School of Medicine, USA | Susanne Blichfeldt, MD, The Danish Prader-Willi Association, IPWSO Clinical and Scientific Advisory Board (CSAB), Denmark | Janice Forster, MD, Developmental Neuropsychiatrist, Pittsburg Partnership, Pittsburgh, PA, USA

Moderated by: Lynn Garrick, Programme Director, AME Community Services, USA

15:00 – 15:45 Panel discussion: What supports are available for people with PWS who overburden the system with their challenging behaviour?  Patrice Carroll, Director of PWS Services, Latham Centers, USA | Lynn Garrick, Programme Director, AME Community Services, USA | Larry Genstil, Psychologist, Genstil Institute of Human Behaviour, Israel | Myles Kelly, Project Manager, PWSA UK,  UK | Maria Kirby, Clinical Services Manager, Resilience Healthcare, Ireland

Moderated by: Norbert Hödebeck-Stuntebeck, PhD, PWS-InterNational, Germany

15:45 – 16:15 Close and thank you

Lynn Garrick, Chair of the IPWSO Professional Providers and Caregivers Board, and Laura Keane, Co- Chair

16:15 End of conference