A needle in a haystack: unlocking the secrets of genetic heart conditions

Date

Time

  @ -

We invite you to join us in person at Rydges Camperdown or online for our free event ‘A needle in a haystack: unlocking the secrets of genetic heart conditions’.

You will hear from Peter Wilson, Head of Philanthropy at the Centenary Institute who will provide an introduction and update on the Institute. This will be followed by a panel discussion featuring Associate Professor Richard Bagnall, Dr Charlotte Burns and the Bellingham family.

Our panellists will discuss the lifesaving research taking place in Centenary’s Centre for Cardiovascular Research, the clinical support provided to families affected by genetic heart disease and the Bellingham family will share their own lived experience and research advocacy with you.

For guests who are able to attend in person, the event will conclude with light refreshments and the opportunity to chat with our Centre for Cardiovascular Research team members from 4.00pm – 6.00pm.

We do hope you can join us in person or online via zoom. We would be delighted if you would like to extend the invitation to family or friends.

Our Presenters and Facilitator

  • Head, Centenary Institute Centre for Cardiovascular Research

    Associate Professor Bagnall is a research leader in the study of human genetic diseases. He defined the genetic causes of the blood clotting disorder, haemophilia A, at King’s College London, UK (PhD) before moving to Sydney. He joined the Molecular Cardiology Program as a Senior Research Officer and now heads the Bioinformatics and Molecular Genetics Group. His current research focus is on understanding how genetic variants cause inherited heart diseases and sudden cardiac death. This is achieved by developing new computational approaches to analyse genome sequencing data and new laboratory-based methods to identify and characterise genetic variants.

    His research outcomes have a direct translational impact on the patients and families who attend the Hypertrophic Cardiomyopathy and Genetic Heart Diseases Clinics at Royal Prince Alfred Hospital, Sydney. Richard has published his research findings in leading journals including the New England Journal of Medicine and Journal of the American College of Cardiology. He was the inaugural recipient of a Centenary Institute Future Leaders Fellowship (2018) and is funded by a NSW Health Cardiovascular Senior Scientist Grant (2019-2021).

  • Dr Charlotte Burns

    Associate Genetic Counsellor in the Centenary Institute Centre for Cardiovascular Research and Genetic Heart Disease Centre at Royal Prince Alfred Hospital

    Dr Burns is a senior genetic counsellor who coordinates the genetic heart disease program at RPA hospital. She has worked with the Centenary Institute and Royal Prince Alfred Hosptial for over 10 years. She completed her PhD in genetic testing and counselling in genetic heart disease in 2019 and also has a masters in public health. She is passionate about continuing to improve the clinical service for families affected by genetic heart disease.

  • Bellingham family

    Research advocates with lived experience of sudden cardiac death in the young

    Meg, Adrian and Ashleigh tragically lost their son and brother, Aaiden to sudden cardiac death seven years ago. The family are still looking for answers so that they can understand what caused Aaiden’s sudden passing. They advocate for the important research taking place at the Centenary Institute in the hope that one day they and the many other families that have lost their loved ones so suddenly and young may receive the answer.

  • Head of Philanthropy, Centenary Institute

    For almost 20 years Pete has held numerous senior fundraising positions at the Sydney Children’s Hospital Network, Barnardos Australia and as Development Manager, Student Life, Sports and Entrepreneurship manager UNSW. In this time, Pete has been a highly successful leader, mentor, director and committee member of all the organisations within which he works and successfully guided and stewarded in excess of $25 million. As part of a volunteer capacity in fundraising for several NFP’s Pete has also raised in excess of $1.5 million dollars through many personal initiatives.

    A huge range of strategic direction and success within the Higher education and NFP sector with a demonstrated history of specialising in major donor strategy and corporate partnerships in the non-profit organisation management industry. Skilled in Nonprofit Organisations, Event Planning, Strategic Planning, Marketing Strategy, and Major Gift Development. Strong community and social services professional. Graduated from Marcellin catholic college Randwick.

Did you know?

  • Genes are the ‘manual’ for how your body is made and how it functions. Variants in your genes are like spelling mistakes in the manual and can cause health issues.
  • We all have around 22,000 genes, but a fault in just one can result in a life threatening heart condition.
  • Up to three young Australians under 35 will lose their lives following a sudden cardiac arrest this week.
  • With no known symptoms and no family history, tragically, death is sometimes the first indication that anything is wrong with these otherwise fit and healthy young people.
  • There is a 50% chance that other family members may have inherited the faulty gene.
  • Identifying the genetic causes of sudden death in young people can protect families by enabling doctors to diagnose them more quickly, implement life-saving prevention strategies and care for families with inherited cardiovascular diseases.

Research and clinical support is making a difference

The Centenary Institute’s Centre for Cardiovascular Research encompasses basic DNA and stem cell science, clinical research in patients, and public health initiatives. Most importantly, we have the key clinical resources, including studies of individual patients and families, which form the basis of all our genetic studies.

The Centre’s research focus is to increase the diagnostic yield of genetic testing and to develop new therapeutics for inherited heart diseases. This is achieved by developing improved diagnostic genetic tests and by exploring the therapeutic potential of small molecules in cultures of heart cells that we grow from our patient’s blood.

This work translates to more families receiving a genetic diagnosis, which improves clinical management and saves lives.

Your personal information

By submitting this form I acknowledge that the information I am providing in this form will be managed in accordance with the Centenary Institute Privacy Statement.

At the Centenary Institute we respect and uphold your privacy under the Australian Privacy Principles and Laws.

Your personal information is collected to process event registrations, donations, issue tax receipts and to communicate with you about the Institute’s objectives, news and events. See Centenary Institute’s full Privacy Statement.

Please contact our Supporter Services team to update your communication preferences or personal information via email communictions@centenary.org.au, phone 02 9565 6100 or mail.

Page image: Broken Heart by Dr Seakcheng Lim and Ms Mira Holliday