By: Tiffany House posted on: July 22, 2013

On November 30, 2012 the Pompe Community lost one of its most valued Advocates: Helen Walker.  Helen was the President of the Australian Pompe Association (APA) and a Board Member of the International Pompe Association.  She was also decorated as a Member of the Order of Australia.

During the 16 years that I knew and worked with Helen, one thing never changed–her unwavering support for her fellow Pompe patients.  She was always available to lend an ear or to give her support to the Community.  I honestly don’t know where she found the strength and energy!

As a fellow Board Member of the IPA I witnessed first-hand her tireless efforts to fight for access to treatment for all patients in Australia and New Zealand.  She was an inspiration to all who knew her and a steady and continuous source of support for all who needed it.

In addition to her tireless efforts to advocate for patients, she was also instrumental in producing several pivotal publications for patients.  She was one of the original authors of the IPA’s Pompe Connections and Pompe Connections: Treatment Edition.  These publications are available on the IPA website ( and are an excellent resource for patients and physicians to learn more about Pompe Diseae.

Together with the APA Committee in Australia, Helen also created a guide on how to care for Pompe patients when they are first admitted to hospital for Australian patients. Too often the nurses and doctors have never seen people with Pompe disease before and are unaware of their needs.

In honor of Helen’s dedication to the Pompe Community, the 2013 AMDA Research Grant will be renamed the 2013 Helen Walker Research Grant.

Thank you Helen for your friendship, your support, and your dedication to the Community.  We will miss you, but you will never be forgotten.

Tiffany House
AMDA President
IPA Vice-Chair