Helen Walker OAMMy sister, Helen Walker was diagnosed in 1990 with Pompe’s Disease. Little was known about this rare disease in Australia at that time. One morning Helen serendipitously happened to watch a TV interview with Professor John Hopwood on the research his group in Adelaide was doing on Glycogen Storage Diseases. She rang him the next day and had a long conversation. His interest in her situation resulted in a firm professional friendship between them. He informed her of his connections with the scientific work developing therapies at Erasmus University and at Sophia Children’s Hospital in Rotterdam.

John also arranged contact with three other known Pompe patients in Australia: Together they formed the Australian Pompes Association with Helen as President.

Through the Australian Diagnostic Service for Pompes Disease in Adelaide, Helen was able to inform managing physicians of the existence of the Association as new diagnoses were confirmed. Doctors were requested to inform their patients of the existence of the APA. And so the organisation grew in membership.

Helen’s gratitude and respect for John Hopwood and the research team in Adelaide was never forgotten. She owed so much for the success of her endeavours to this dedicated group and as a consequence she left a substantial amount from her estate to the South Australian Health and Medical Research Institute for future research.

I first met Professor Hopwood at Helen’s funeral in November 2012. John flew to Melbourne to speak at her funeral. Earlier this year he rang me to announce his imminent retirement and his wish to launch a memorial benevolent fund in honour of Helen at The Institute. He invited me to attend the launch and to speak. On May 10 this year I attended SAHMRI’s launch of the beneficiary fund called ‘The Walker Society’.

The establishment of the South Australian Health and Medical Research Institute (SAHMRI) began in 2007 when the South Australian Government commissioned the Review of Health and Medical Research in South Australia which recommended the establishment of a dedicated research institute for South Australia.

In response to this recommendation, the South Australian Government committed to establish SAHMRI in 2008, and the Federal Government allocated $200 million to build the research facility. In December 2009, SAHMRI was incorporated as the state’s first independent health and medical research institute.

As a new institution, the stunning architecture of the completed building and the research which SAHMRI is undertaking has attracted much interest both within Australia and worldwide. The institute is composed of approximately 400 researchers, both local and international.

The research carried out is divided into seven main areas, namely: Aboriginal Health, Cancer, Healthy Mothers, Babies & Children, Heart Health, Infection & Immunity, Mind & Brain, Nutrition & Metabolism

Each one of these areas is seen as being important for human development and well-being and all research is subject to funding, and of course the amount of funding will determine how much research can be carried out.

With ever tightening government budgets, there is a desperate need for philanthropists to support ongoing research into human diseases.

It is my hope that ‘The Walker Society’ will be a successful endeavour for SAHMRI.

If we had more warriors like Helen working in liaison with institutes then scientific research would have the opportunity to achieve far greater outcomes.

 

Speech by Bruce Walker at the opening of The Walker Society in honour of his late sister Helen Walker OAM a warrior for Pompe patients

Firstly, I would like to thank Professor Wesselingh and the Institute for inviting me to the launch of ‘The Walker Society’ in honour of my deceased sister. It is wonderful to be here representing Helen.

For one moment I would like you to imagine the following scenario:

It is 1990 and you are experiencing difficulty walking with swaying hips. You travel from Swan Hill to Melbourne expecting to have a hip replacement but instead a neurologist tells you that you have a rare glycogen storage disease called ‘Pompes’. You are then told by your GP that there is very little known about the disease, that it will be terminal and that you should go home and get your affairs in order in anticipation of an early death.

What would be your reaction? What would you do?

It was an incredible shock for Helen. But she was never a person who threw in the towel. She had an incredible determination to conquer this affliction and started her own search for information.

And it was here in Adelaide that Helen turned to Professor Hopwood and his research team. One morning she serendipitously happened to watch a TV interview with John on the work his group was doing on Glycogen Storage Diseases. She rang him the next day and had a long conversation. His interest in her situation resulted in a firm professional friendship between them. He informed her of his connections with the scientific work developing therapies at Erasmus University and at Sophia Children’s Hospital in Rotterdam.

John also arranged contact with three other known Pompe patients in Australia: Together they formed the Australian Pompes Assocation with Helen as President.

Through the Australian Diagnostic Service for Pompes Disease here in Adelaide, Helen was able to inform managing physicians of the existence of the Association as new diagnoses were confirmed. Doctors were requested to inform their patients of the existence of the APA. And so the organisation grew in membership.

At the same time Helen established an internet friendship with a fellow sufferer: Maryze Schoneveld van der Linde in the Netherlands. Maryze has a world wide reputation as an advocate for the cause of Pompes sufferers. She was at that time on the International Pompes Board and she became an invaluable contact and informer. Maryze was able to supply Helen with all the latest developments and useful contacts in the pursuit of the new enzyme replacement therapies.

Pharming Group, (in the Netherlands) was starting a venture for the worldwide development and commercialisation of enzyme replacement for Pompes Disease prepared from the milk of genetically modified rabbits.

At the same time an unrelated venture was begun by the Genzyme Corporation in Boston(USA) to prepare the appropriate enzyme from cultured cells also for trials in patients. Helen asked Maryze’s advice about the protocol for getting Australian patients to be included in the Pharming treatment trials.

Once again it was the Adelaide team which Helen turned to in 1999. The possibility of a trial was discussed at a meeting here with John, representatives from Pharming, the US Acid Maltase Deficiency Association, Helen and the other three Australian Pompe patients. However in 2000 Pharming announced financial difficulties and Genzyme acquired its assets and knowledge in 2001.

The Dutch group of patients advocated for trials to be conducted in a number of centres. Helen pushed for Australia to be included. She was a fierce warrior for the cause of Australian patients. She never gave up and used every strategy she could muster to support her cause.

At one stage she wrote a strongly worded email to Marybeth Matteo, Director, Patient Advocacy, Genzyme, USA:

Dear Marybeth,

As I sit here and see yet again (from the UK report) another delay in the trials for adults … I just want confirmation from your company that there WILL be adult trials.

I also have concern that Professor Hopwood seems to be used by the Pompe groups all over the world but yet no advice is given that adult trials will come this way to Australia. … For as far back as the Pharming days John has been involved. He has spent numerous hours with the Guthrie Test. Most of the Aussies have given blood and anything else that was asked for to further the studies. His work in preparation for infantile testing makes him a giant in his work with GSD.

I am feeling angry. … Helen

Shortly after Helen became aware of a Genzyme initiative: the International Charitable Access Program (ICAP) to assist patients unable to fund the cost of therapy.

This opened the possibility of treatment in Australia for Pompe patients while waiting for approval for the drug Myozyme to be funded by the Australian Federal government.

She became aware of the ICAP criteria for patient selection and set out to get her Australian members included in the program.

Through all her persistent work and with the support of John, Genzyme finally agreed to introduce the ICAP initiative into Australia. A great milestone but the battle had only begun.

The next obstacle was with doctors and hospitals who were reluctant to initiate the therapy. Avoidance of time consuming paper work and hospital budgets were the main reasons for hesitancy. But Helen never gave up – harassing both hospital boards and participating doctors. She used every means possible – including TV and radio news interviews and letters to government ministers. But ultimately her persistence paid dividends and treatments began.

Last year the Australian Government finally approved funding for Myozyme to all Australian patients. At the last count that number is now 45.

Ironically Helen did not live to see this final achievement. In November 2012 she died from ovarian cancer.

After receiving an Order of Australia Medal in 2007 she successfully instigated the same investiture for John. Her gratitude and respect for him and the team here in Adelaide was never forgotten. She owed so much for the success of her endeavours to this dedicated group and as a consequence she left a substantial amount from her estate to this Institute for future research.

With ever tightening government budgets, Australia desperately needs philanthropists to support ongoing research into rare diseases.

It is my hope that ‘The Walker Society’ will be a successful endeavour for this Institute.

If we had more warriors like Helen working in liaison with this Institute then scientific research would have the opportunity to achieve far greater outcomes.

Thank you for allowing me the opportunity of sharing with you the life of Helen Walker - my amazing sister.