Erin Gumbleton talks about her life with PWS with a wonderfully positive outlook. Erin is speaking at the 3rd Asia-Pacific Conference in Melbourne, Australia, 2015.
Jacob Zavitz, age 21, talks about his personal experiences of living with PWS and his battle with food. Jacob is speaking at the FPWR Canada Conference 2013.
Ivan Dingle lives in Taradale, Hawkes Bay, and has hosted his own radio show. At the end of 2016, he achieved a Radio Kidnappers Broadcasting Achievement Award. Read about his successes in this newspaper article which was printed in the Napier Courier and Hastings Leader.
Hannah’s Story: Living Life with PWS. Hannah made this awareness video for PWS Awareness Month in 2013. It explains about PWS and the challenges Hannah is determined to overcome.
You may be keen to join our Adults with PWS Leadership Group. The group might discuss ideas about support needs from the NZ PWS Association. You might also speak for other people with PWS by being leaders or creating awareness. We are also looking for people who would like to write information for the group website page.
Here are some other groups you might want to get involved with:
WHERE CAN I GET SUPPORT?
Join one of our Facebook groups
We have 2 private groups you can join! This means only members can see your posts.
My PWS Online Network is just for people with PWS living in New Zealand and Australia who are 16 or older (13yrs+ with parental permission.)
PWS Matters For All (NZ) is for people with PWS, plus support workers, parents and carers. You need to live in New Zealand and be 16 or older.
Contact your local NASC (Needs Assessment and Service Coordination)
NASCs talk with you about your support needs and decide what support services will be funded for you. You can ask for a review if your needs change. Follow this link and scroll down to find the contact details for your local NASC.
Enabling Good Lives
The disability system is slowly changing. The new system should make it easier for you to access support. If you live in an Enabling Good Lives area, nothing will change until your next review, unless you contact them earlier. So far, the system was trialled in Christchurch and Waikato, and has been rolled out in MidCentral since 2018.
Contact an advocacy provider to advocate for you or help you be a self-advocate. (An advocate is someone who speaks up for your beliefs or rights.)
IHC offer lots of services such as residential services and vocational services, but they also offer advocacy and you do not have to be using their other services to get advocacy support. Freephone IHC Advocacy on 0800 442 442 or read more: www.ihc.org.nz/advocacy
CCS Disability Action have a great tool for helping you be a self advocate. It’s called How’s it Going? and helps you think about the areas of your life that are working well and some of the things that could be better. Follow this link for more information about CCS advocacy.
Find out about other advocacy providers on our NZ Links page.
Contact a support helpline
There are lots of free helplines that might be able to help you, for example: Youthline, 0800 What’s Up?, The Samaritans, Citizen’s Advice Bureau, Skylight, 1737, The Lowdown, Depression Helpline and Lifeline Aotearoa. Click here for details.
Abbott Philson is a PWSA(USA) Advisory Board Member and has made this awareness video to explain what Prader-Willi syndrome is and describe his experiences.
Meagan Michie, age 23, talks about her experiences, overcoming challenges and her amazing achievements. Meagan is speaking at the FPWR Canada Conference 2013.
Katherine Stanley is the author of the book ‘A Book of Bullies’. Unfortunately, Katherine was bullied because she has PWS, but at age 17, she published her book about bullying which is for sale on Amazon. She also has a website, a Book of Bullies Facebook page and gives talks about bullying! Read more about her in this blog post. Her book can be borrowed from our Library.
Our Way of Life is a book written by people with PWS in the UK and especially for people with PWS. It’s about what it’s like to live with PWS and how to create a positive and fulfilling life. The book can be borrowed from our Library.