Latest HeartKids Australia news

HeartKids Australia News

During the Summer, our new Chair hosted a special farewell dinner for the Frawleys. During the evening an engraved decanter was presented on behalf of everyone associated with HeartKids to Dom which recognised his vision, leadership and commitment in working to establish HeartKids Australia and for his work as the founding Chair of the Board.

Chair Stephen Shepherd with Dom and Maggie Frawley and CEO Neil McWhannell

During February Pasta Master conducted a series of launches of its support for HeartKids. With the significant expenses involved, these were only conducted on the eastern seaboard in Melbourne, Sydney and Brisbane. It was pleasing to see, HeartKids families and leading cardiologists from each state take up the offer to attend and speak about the partnership between HeartKids and the hospitals. The support of Andrew Douglass and his company will always hold a special place in the history of HeartKids and is one that we are most appreciative of.

Pasta Master CEO Chris Szlachetko presenting the cheque to Riley Brown and his parents. Dr David Winlaw, who is to have his research funded through our corporate donations, looks on.

Over the summer there was also a range of fund raising events throughout the country. HeartKids Queensland and HeartKids West Australia held most successful Gala Balls, whilst in NSW the Vodafone group held a Charity Golf Day. This was held at the spectacular St Michael’s course overlooking the ocean. Despite a fair few balls ending up in a watery grave, a great day was had by all with over $50,000 being raised. This is to be shared between HeartKids and the other selected charity.

Research

With the assistance of our major sponsors, Manchester Unity and Pasta Master, HeartKids has recently begun its support of research into children’s heart disease. The first recipients of this support are Assoc Prof David Winlaw from the Kids Heart Research Unit at The Children’s Hospital Westmead and Dr Michael Cheung from the Murdoch Research Institute located at Royal Children’s Hospital in Melbourne.

Prof Winlaw’s project will investigate the genetic causes of children’s heart disease. In the project he will be comparing the DNA of children affected by heart disease with that of 1000 other individuals without any family history of congenital heart disease. Through identification of specific but subtle genetic abnormalities, it is hoped that future interventions can be better targeted, similar to the way in which folate has reduced incidence of spina bifida.

In accepting the grant David stated that childhood heart disease remains a common and complex disease and this study is a necessary step toward lessening its impact. In the future, knowing how these genes interact with the foetal environment will also lead to greater understanding of why CHD occurs and the risk to future siblings or offspring. This may later lead to matters of prevention, lifestyle and intervention.

Assoc Prof David Winlaw with Senior Scientist Dr Tanya Butler

The second project is being lead by Dr Michael Cheung. Dr Cheung is a senior cardiologist at the Royal Children’s Hospital in Melbourne whilst conducting his research out of the attached Murdoch Research Unit.

Dr Cheung’s project titled, ‘Remote Ischaemic Preconditioning’ will look at reducing cardiopulmonary bypass induced injury. In the past many children who have undergone open heart surgery have acquired injury to other major organs, including the brain and liver.

Dr Cheung states patients with more complex forms of disease require surgical repair in the first month of life where risk of significant morbidity and mortality is greatest. Over the past few years he has carried out studies into injuries caused by heart-lung bypass support of the circulation during open heart surgery.

Essentially, brief periods (5 minutes) of reduction in blood flow to the arm or leg, using a blood pressure cuff, activates protective pathways throughout the body. He has shown that this simple non-invasive and drug free method of organ protection reduces injury to heart muscle in animal models of heart attack and also heart-lung bypass.

He has also shown significant benefits, with reduced injury to the heart and lungs, to a group of older children undergoing surgery. He now wishes to extend his work to children with the most severe forms of heart disease and also study whether this technique protects against brain injury in an animal model of cardiac surgery. He predicts that reduction in organ injury will have significant benefits to children with heart disease with reduction in morbidity and mortality both in the short and long term.

Neil McWhannell
CEO

Chairman’s Report

In February the National Board met in Sydney, for what turned out to be a ‘watershed’ moment in our evolution. New Board members took up their respective roles with each one presenting to the meeting. Outcomes included the endorsement of a 3 year Strategic Plan, along with the acceptance of a comprehensive Governance Manual which we hope will be adapted for use by all States.

During the meeting we also reviewed where we are at as an organisation. Common themes from all states included:

• Everyone is in a process of transition
• Need for clear and ongoing focus on local fundraising
• Need to get the right people and manage costs
• Need to develop appropriate structures to manage state organisations
• State Governance responsibilities are increasing as we become more professional
• Need to review how we use volunteers, now than we are employing staff to ensure that they continue to perform valuable and valued tasks as part of the team

In reviewing the Strategic Plan we also identified key priorities for HKA in the coming year. These were:

• Help ensure that all state organisations are thriving and aligned
• Become the Public face of CHD
• Grow and align CHD Research

As a follow up to the meeting we resolved to commission a ‘White Paper’ on the needs and key issues relating to Children’s Heart Disease. Coupled with a strong communication program, his will significantly increase awareness in CHD and help future proposals to core sponsors and State and Federal Governments. We are also began work on a ‘Positioning paper’ which will provide a clear strategy on how we should present ourselves as the Public face of CHD.

I look forward to sharing progress on these important initiatives as the year progresses.

Stephen Shepherd
Chair