Prader-Willi Syndrome Association Workshops

Lifeplan recently had the great pleasure, of inviting Kate de Josselin from the Prader-Willi Syndrome (PWS) Australia Association, to visit Lifeplan in Western Australia. Kate presented two Workshops for Lifeplan staff, Parents who have children living with PWS and other interested service providers.

The Prader-Willi Syndrome (PWS) Australia Association are a not-for-profit organization, who’s purpose is to help people born with PWS, along with their parents and other family members, friends and other interested parties. The Association are involved in many different activities, with the end goal to help people with PWS to live their life to the full. This is through a range of activities, including educating the community, directly helping with life supports, or liaising with the NDIA ensuring the NDIS service needs of participants are met.

PWS is a non-inherited genetic anomaly, which effects many parts of the body, including affecting appetite, growth, metabolism, cognitive function and behaviour and it is typically charactered by small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), weak muscles, insatiable hunger, extreme obesity, intellectual disability and anxiety-driven distress. It is estimated that one in 12,000 to 15,000 people has PWS.

Kate was able to give a unique insight into what it means to live with Prader-Willi Syndrome, as her son lives with PWS. She was able to call on her 36 years of living with PWS, to share her wealth of formal and first had experience on the better practice of supporting people living with PWS. All training participants attending her sessions, acknowledged Kate’s authenticity and were so appreciative of her traveling to WA to deliver the training, which was highly thought provoking and educational.

Also attending the sessions was Carol Franklin. Carol, who’s son also lives with PWS, has formed a WA chapter of the PWS Association, with the shared aim to support families and individuals with Advocacy, Peer support and raising the awareness of PWS in Western Australia.

Lifeplan is pleased to support the WA Chapter of PWS with a space at our centre in Welshpool, so that the organisation has a regular meeting place into the future.

If you would like further information PWS WA, you can visit the Australian website or contact Carol via email on: praderwilliwa@gmail.com.

Lifeplan are always here to support you in any way we can, so please feel free to contact us, if we can assist in any way.