Western Australia Meeting Report
PXE WA Support Group
Meets in Perth, Western Australia!
On Sunday July 26, 2009, a PXE Support Group Meeting was held in Perth, Western Australia (WA). A new group has been formed and we have named ourselves “PXE WA”. The purpose of the meeting was to see if people wanted a group and if so, what they would like to gain from it, and, of course, to meet and chat and put faces to names.
We met in the conference room of the Genetic Support Council of WA. Kristina, representing the Support Council, kindly came in on a Sunday and joined us for the meeting. Kristina welcomed everyone and gave a brief description of what the Genetic Support Council can do for us. The council has been wonderful in supporting our endeavour to form a group.
Seven people attended and everyone seemed to really enjoy meeting and talking. Four attendees have PXE and have known for many years, and two have a daughter, aged 20, with PXE.
We came up with some ideas of useful things that we could do, such as build a database of doctors in WA who are familiar with PXE and whom members have found to be supportive and competent. Another idea was to share experiences on insurance and cosmetic surgery because although we read peoples´ comments on the PXE Chat list, they are not always the same experiences that we may have in Australia. A newsletter will go out regularly. Members can contribute notices and articles. We will also keep a database of contact details of members and share these contacts once people have indicated that they are happy to have their details passed on. A contact list will make it possible to efficiently forward on any important or new information.
A pamphlet summarizing PXE has been printed. Information was gathered from PXE International and from a local retinal specialist working at the Lions Eye Institute in Perth. This pamphlet will be distributed into doctors´ waiting rooms throughout Perth to help any newly diagnosed people and their families and to encourage them to join the support group.
We plan to meet socially for a coffee every six months and have a more formal meeting once a year. If you would like to be a part of PXE WA, please don't hesitate to contact Sally Growden, PXE WA Support Group Office leader.
188 Growden Road
Kondinin WA 6367, Australia