On the 30th November 2012, Helen Walker OAM (Member of the Order of Australia) passed away. Helen was board member of the International Pompe Association (IPA) and President of the Australian Pompe’s Association. Helen passed away at the age of 72 having benefited from Myozyme treatment for the last five years which both improved and extended her life. Helen had been member of our board for over 10 years.
Helen made sure that her Australian compatriots and her friends from New Zealand were never forgotten. She fought constantly in the interest of Pompe patients in her country and New Zealand, and also of those in other countries; especially around South East Asia. Together with the APA Committee in Australia Helen created a guide on how to care for Pompe patients when they are first be admitted to hospital. Too often the nurses and doctors have never seen people with Pompe disease before and are unaware of their needs.
Helen was an active contributor in the writing of the Pompe Connections and the Pompe Connections Treatment Edition to help educate patients about their disease. When patients needed advice and guidance Helen was always there and was a tireless advocate to obtain treatment for all Pompe patients in Australia. Helen always pressed for a new idea or way of approaching things, had a lovely optimism and never gave up on people.
We will always keep her in our heart as she touched our lives deep in our souls.