A gift to last more than a lifetime

17 Sep 2016
A gift to last more than a lifetime

Helen Walker was 50 when she was diagnosed with Pompe disease, a glycogen storage disorder (GSD). A rare metabolic disease, it damages nerve and muscle cells, and is ultimately fatal. 

When she was first diagnosed, the doctor told Helen there was no treatment to offer her, and there was definitely no cure. 

Helen’s determination to make a difference 

No-one knew much about Pompe disease. They knew how to diagnose it, but had little else to offer patients. Helen decided that wasn’t good enough. 

She saw South Australian researcher Professor John Hopwood AM on television talking about his work in glycogen storage disorders, and reached out to him. Professor Hopwood helped Helen contact international research colleagues in her hunt for more information about potential treatments for the brutal disease. 

Helen became an active and passionate advocate for the development and use of a potential treatment for Pompe disease, a drug called Myozyme. With fellow Pompe sufferers, she lobbied government, pharmaceutical companies, doctors and researchers tirelessly. Eventually Helen was awarded the Order of Australia in recognition of her efforts. 

“I try to count my blessings not my burdens but some days are easier than others.”  

Helen died on 30 November 2012 after a battle with cancer. She left a gift to SAHMRI in her will that is directly supporting research into lysosomal storage disorders like Pompe disease.  

A bequest society named after an inspirational woman 

Helen embodied the passion that drives our research; an unending quest for answers to tremendously difficult questions. 

She commented to a friend “Every day that I press on and persevere is my way of saying blast you to the disease.”  

Helen’s gift to SAHMRI was our first bequest, and we’ve named our bequest society in her honour. The Walker Society is a special group of people who have decided to leave SAHMRI a gift in their will. 

Make a gift in your will to SAHMRI 

Like Helen, you can make a difference when you leave a gift to SAHMRI in your will. If you would like to hear more about how a gift in your will can benefit the health of generations to come, please get in touch. You are welcome to contact Rebecca Miller (08 8128 4105 or rebecca.miller@sahmri.com) for a confidential discussion.