Family Meetings
Progressing from childhood to adulthood
Saturday, 23 November
9am AND 5pm London, UK time
To accommodate participants from around the world this meeting will be held at 2 times. Participants need only attend 1 of the 2 meetings, though you are welcome to attend both if your time zone allows. Meetings are 90 minutes.
Periods of transition can be some of the most stressful and difficult times for people with PWS. Planning for change is important to help reduce possible reactive, fearful and oppositional behaviour that can develop as a result of change. Supporting someone with PWS through major life changes takes time, patience and encouragement as well as guidance and direction.
At this meeting we’ll discuss challenges within the family, school, work, group homes, social settings and more. Speakers and participants are invited to share transition planning strategies, and personal experiences of transition challenges.
The meetings will be held at 9am and 5pm London, UK time and will include presentations from both professionals and parents, followed by Q&A and discussion. Topics include:
- Human rights / self-determination
- Friends, relationships and sexuality
- Family testimonials
- Care in the family / care in group homes
More information on the speakers for each meeting can be found at the bottom of this page.
The meeting is directed at parents and families, but anyone with an interest in PWS is welcome. There is no cost, but registration is required.
IPWSO strives to make collaboration in our community as accessible as possible. If you would like to take part but feel you may experience difficulty with language or any other aspect of communicating with the group, we encourage the support of interpreters, family members or caregivers. Please let us know if you would like to plan any special arrangements and we’ll be delighted to support this.
About our speakers
9am Meeting
Gary Brennan is National Development Manager for the Prader-Willi Syndrome Association in Ireland. He joined PWSAI in May 2019.
Gary has 16-years’ experience in the social care disability sector, 10 of which were in residential care supporting adults with PWS. Gary holds an Honours degree in Social Care from the Technological University of Dublin, a Diploma in Training and Further Education from the National University of Ireland, Galway and a Certificate in Leadership and Management from the University of Limerick.
Gary has recently co-authored a report on service provision for people with PWS in Ireland with a strong focus on the voice and lived experience of people with PWS and their families. He is a huge supporter of self-advocacy for adults with PWS and co-chairs the PWS Adult Stepping Up Advocacy Support Group that links the voice of people with PWS to the strategies of the association with a view to develop a strong foundation within PWSAI from which the future of PWS awareness, support and services provision can advance.
We’ll also hear from Karen O’Reilly, a parent in New Zealand, who will share about the process of her child, Cameron, moving out from home into supported living, and what that has been like for the family.
Finally, Liezl Warnich Vlok will talk about Huis Henri, a home in South Africa. This presentation will share some background, some challenges, and also how the carers and the kids manage with the transition to the home.
5pm Meeting
Patrice Carroll is the director of PWS services for both children and adults at Latham Centers in Massachusetts, USA. Patrice received her MSW from Simmons College, Boston, MA 2008. Patrice is the co-chair of the PWSA | USA professional providers advisory board and has been working with children and adults diagnosed with PWS since 2002. Patrice is a co-author of the book “Living Healthy with Prader-Willi Syndrome”. In addition to her experience with developing person-centered vocational programming for people with PWS, she has specialised in the management of skin and rectal picking using intensive, non-contingent, sensory stimulation.
We’ll also hear from two parents who have a wealth of experience with PWS, and are members of IPWSO’s Famcare Board. Amalia Balart is a member of the Board of the Chilean PWS National Association. She created the Chilean PWS network of families throughout the country, organising them by zones, each with a Coordinator that reports to the central Board. Amalia is mother to an adult woman with PWS. This presentation will share some personal experiences of Transition from Amalia’s family.
Verena Wanker-Gutmann is Chair of IPWSO’s Famcare Board. She developed the Austrian PWS Association and was chairperson for 10 years. She am a mother to an adult daughter with PWS. This presentation will focus on the experiences of the family when there are difficult changes in the residential home.
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