Verena, a mother of a 29 year old daughter with PWS, explains why attending this conference will be so valuable for families:
Knowledge is so necessary to manage the challenges of life with PWS.
In Cuba you will have the opportunity to get support if you have a baby, a young child or even a grown-up with PWS: experts from all over the world will come together to report and discuss, to give hope and knowledge.
Topics like nutrition, physical activity and therapy, school education, ageing, work and behavior management at home or in a residence will be treated and discussed with you by scientists, professional caregivers and parents with special PWS experience. This is something unique as living with PWS is not so common. It is like “coming home”! Don’t worry – they will speak to you as a mother, father or another family member. They will understand you. The IPWSO family speaks the same language – maybe the first time since the birth of your daughter or son!!?? But you will get also hope and perspectives that a quality of life with PWS is not only possible but also experienced! I am sure that you will find in Cuba the part of the puzzle which is useful and helpful for your future and the future of your individuals with PWS!!
Mother of a 29 year old daughter with PWS
IPWSO board member
Board member of PWS AUSTRIA