As the Acid Maltase Deficiency Association (AMDA) restores its research grant to its original name, the AMDA Research Grant, we want to pause and honor the woman it was renamed for in 2013: Helen Walker OAM. Walker was a recipient of the Medal of the Order of Australia (OAM), a founding president of the Australian Pompe Association, and a board member of the International Pompe Association.
Walker was diagnosed with Pompe disease in 1990, at a time when almost nothing was known about the condition in Australia. She found her way to Professor John Hopwood’s research after seeing him in a television interview, and the relationship she built with him and his team in Adelaide shaped the rest of her advocacy. In 1997, Walker joined with three other Australian patients — Bet Cook, Bob Morrison, and Gloria Halliwell — to found the Australian Pompe Association. She served as its first president and became a trusted point of contact for people newly diagnosed with Pompe disease, welcoming them into a growing Australian Pompe community.
That welcome was personal. Those who knew Walker described her as warm and knowledgeable, someone who greeted new patients with open arms and, often, a slice of her “world famous sponge cake.” At the same time, she was a fierce and tireless campaigner for patient access to treatment, carrying that fight from Australia onto the International Pompe Association’s board, where she worked alongside advocates around the world, including the AMDA’s own Tiffany L. House.
Walker passed away in November 2012. Although she had received Myozyme for the final five years of her life, she did not live to see treatment become available to all Australians with Pompe disease in 2015. In 2007, her years of service had already been recognized with a Medal of the Order of Australia. After her death, Walker’s legacy continued at the South Australian Health and Medical Research Institute (SAHMRI). Her gift to SAHMRI was the institute’s first bequest, supporting research into lysosomal storage disorders, and SAHMRI later named its bequest society, the Walker Society, in her honor.
In 2013, the AMDA renamed its research grant the Helen Walker Research Grant to carry her legacy forward and to inspire the next generation of Pompe disease researchers and advocates. As the grant now returns to its founding name in memory of Tiffany, it is not a step away from Helen. It is a continuation of the same partnership and shared vision she and Tiffany built together: uniting patients, families, and researchers, and making sure everyone living with Pompe disease has access to treatment and a voice in their community.
Walker’s story is part of the AMDA’s story. We are grateful for her life and her work, and we will keep telling it.