On the 17th - 19th October the Australian Pompe's Association held its first National patient and family support forum in Melbourne.The objective was to bring everyone together and provide advice on diet and exercise and provide some advice on living with Pompe disease.
With Australia being so vast, similar size to Europe, but with only 33 patients the task of bringing members together was going to be a challenge. Members are living in every state and territory and some members had flights of over 4 hours to join the meeting. Three of our New Zealand colleagues also made the journey across the Tasman to be at the meeting. The forum was important as many of the members being so isolated had never met another Pompe patient or one who is not related to them. The opportunity to learn from one another and to just see how others have conquested the challenge of getting up or negotiating a few steeps was so important.
The forum started on the Friday with a reception and then on the Saturday and Sunday there were a range of speakers. A variety of information was provided to give everyone, some new information on Pompe disease, from the members who had just joined the association last month to members who have been with the association for years.
The following presenters supported our meeting: Dr. Barry Byrne from the University of Florida, Professor John Hopwood (APA patron), Associate Professor Andrew Kornberg, Associate Professor Gerard de Jong and Dr. Kate Carroll. All gave much insight into the care of patients with Pompe and how to cope with the challenges of Pompe. There were also speakers invited to discuss regulatory issues, public relations and from ResMed, a company in respiratory care equipment.
Patients gave insight in their stories. These stories were very moving, particularly from members who do not yet have access to treatment. Their stories reminded everyone how important it is to continue to press the Australian and New Zealand governments to provide funding for every Pompe patient to ensure that all can live full and productive lives.
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A group photo of all participants in the first National patient and family support group forum in Melbourne.