Conference Programme

6th International Prader-Willi Syndrome Caregivers’ Conference

Please note: The Conference Organisers reserve the right to amend the content and timings of the programme as deemed necessary.

You can also download the PDF here.

Day 1 | Tuesday 21 May

09:00 – 09:30 Opening and welcome 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

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 and Lynn Garrick, USA

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

          4. Understanding behaviour Leaders: Norbert Hödebeck-Stuntebeck, Germany and Tony Holland, UK

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

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

          4. Understanding behaviour (repeated) Leaders: Norbert Hödebeck-Stuntebeck, Germany and Tony Holland, UK

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 Participants TBA shortly

Moderated by: Hubert Soyer, Psychologist, Germany

14:15 – 15:00 Questions and Answers: Your medical questions Susanne Blichfeldt, MD, The Danish Prader-Willi Association, IPWSO Clinical and Scientific Advisory Board (CSAB), Denmark and 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: Laura Keane, Chief Executive, Resilience Healthcare, Ireland

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