Love isn't enough. Only research can find a cure

Tamarra Love

“If love was the cure, my daughter wouldn’t be so sick. Please support cardiac research to help unlock the mystery of childhood heart disease.” Tamarra Love (Mother of Chloe, born with congenital heart disease).

For the first few months of my pregnancy with Chloe, it never crossed my mind that my baby could be born with heart disease. Admittedly, I had no idea that congenital heart disease is so common, affecting 1 in every 100 babies born. But then, at my 20 week ultrasound, my husband and I were told our precious baby girl had hypoplastic right heart syndrome (HRHS) and tricuspid atresia. Words that plagued me all pregnancy, and now conditions that haunt my family.

HRHS is a very serious congenital heart disease that’s diagnosed when the right side of a baby’s heart is underdeveloped and unable to pump blood efficiently.

Like 8 out of every 10 congenital heart diseases, doctors have no idea what causes it. Only research can provide answers to these heartbreaking diagnoses.

As a mother of a child born with heart disease, I ask you to please make a generous gift today and help unlock the mystery of devastating diseases like HRHS.

Chloe is now four years of age and in her short life has already had three open heart surgeries – her first at just four weeks old and her last only a few months ago.

This most recent one has been the hardest. I’ve had to summon any strength I could, to cheer her on, despite having tears lurking beneath the surface. And the fear of losing Chloe has been indescribable…Tamarra and Chloe

When you see your child, lying in a hospital bed, hooked up to monitors and having machines breathe for her, you wish you could demand answers.

I want to know why my baby was born with a heart defect. Is there something we could do to prevent this? Will there be a cure for my daughter?

Parents can have all the love in the world for their children but when they are sick, love isn’t enough. We need answers.

Your dedicated gift today could fund incredible research into the detection, treatment and cure of childhood heart diseases. Please give generously to help provide the answers families like mine so desperately need.

I’ve been told that each of us, whether a newborn baby or a full-grown adult, has a genetic sequence in our DNA that is made up of six billion pieces of code.

World-renowned researchers, Professor Sally Dunwoodie (pictured below) and Professor Richard Harvey at the Victor Chang Institute are on the hunt for the gene mutations responsible for childhood heart diseases like hypoplastic right heart syndrome (HRHS).

Thanks to advances in technology, the amazing ‘gene machine’ available to the Victor Chang Institute, can do a job that previously took 12 years, 350 times a week!

Sally Dunwoodie

However, reading the code and finding the mutated genes is a huge job ahead of the professors. Supported by their teams they will:

  • Obtain tiny skin biopsies from babies with HRHS and turn them into stem cells (don’t worry – it doesn’t hurt them!)
  • Recreate a baby’s heart muscle cells from their stem cells
  • Compare the genetic code between a child with HRHS and unaffected family members
  • Research possible gene mutations to find out which has caused the defect
  • Provide genetic counselling to families like ours, affected by HRHS

I wish I could find the cure myself. But I’m not a scientist. I am a mother of a beautiful little girl suffering from this life-threatening condition so all I can do is plead that you support the Victor Chang Institute and enable this vital work. Click here to donate.

Every single gift, that someone like you gives the Victor Chang Institute, gets researchers one step closer to finding a cure to childhood heart disease. For parents like me that would mean more than you could ever imagine.

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Tamarra Love

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Privacy Policy

1. Our privacy commitment

The Victor Chang Cardiac Research Institute respects your privacy.

We collect, store and use your personal information to help us fight heart disease. This Privacy Policy explains how we handle the personal information we collect relating to our fundraising activities – this includes marketing, events, our website, and health promotion services such as the Health Check Booth.

2. What types of personal information we collect

Personal information means information that identifies you or that could reasonably be used to identify you. The types of personal information we collect may include your name, gender, contact information, email address, credit/debit card information and if you consent to take part in our activities and events, health promotion services or to receive marketing materials from us.

3. Health information and other sensitive information

We do not collect health information or other types of sensitive information as part of our general fundraising activities or through our general web-site.

4. Using unsolicited information

Unsolicited information is information that is given to us that we haven’t asked for, from you or anyone else. If we receive this type of information, we will check whether this information is reasonably necessary for what we do. If it is, we’ll handle this information in the same way we do all personal information under privacy laws. If we don’t need it we’ll destroy or de-identify it.

5. How we collect your personal information

Where possible, we will collect your personal information directly from you. This may be in person (e.g. when you attend an event), on the telephone, or on-line.

We only collect information by lawful and fair means.

We may also obtain personal information from third parties or publicly available sources. In this case, we will take reasonable steps to contact you and ensure that you are aware of the circumstances surrounding the collection and purposes for which we collected your personal information.

6. Why we collect your personal information

We may collect your personal information for a number of purposes, including:

  • Marketing: to communicate with you about donations, our activities and fundraising events.
  • Health promotion: to provide you with services and information related to cardiovascular disease and its risk factors and research-related events and seminars.
  • Other activities: communicating with you to verify your identity, to improve and evaluate our programs and services, and to comply with relevant laws.

7. What happens if you don’t provide your information?

If you do not provide some or all of the personal information requested, we may not be able to offer you services, process your donations, or provide you with information about our events and activities.

8. Using a pseudonym or engaging with us anonymously

Anonymous donations may be made to the Victor Chang Cardiac Research Institute at any time by contacting us directly. Please note that we are unable to provide anonymous donors with receipts.

If you want to make a general enquiry or browse our web-site you can do so anonymously.

9. Website usage information and cookies

We do not use ‘cookies’ or any other methods to record information that is personally identifiable such as a visitor’s contact details, IP address, or domain name. We do use ‘cookies’ to anonymously track visits to our web pages and the documents that are downloaded in order to compile statistical information. This provides us with information about which pages are popular. If you prefer for ‘cookies’ not to be used, you can set your browser to disable them.

10. When we disclose your personal information

We may need to disclose your personal information to our agents in order to carry out our fundraising activities. This may include agencies who perform services on our behalf, such as mailing houses, printers, information technology services providers, archiving services, database services and telemarketing agencies. These services will always be provided under strict confidentiality agreements.

In rare cases, we may be required by law to disclose your information to a government or law enforcement agency (for example to investigate an allegation of credit card fraud).

11. Security of our information

We take all reasonable steps to protect the personal information we hold from misuse, interference and loss, and from unauthorised access. Electronic information is stored on secure servers that are protected in controlled facilities.

We do not use data hosting facilities or third party service providers that store information overseas.

Hard copy information is generally stored in our offices, which are secured to prevent entry by unauthorised people. Any personal information not actively being used is archived, usually for 7 years, with a third party provider of secure archiving services. Where personal information is stored with a third party, we have strict agreements in place that require those third parties to maintain the security of the information.

12. Security of direct debit and credit card information

We use a third-party financial institution to process our credit card transactions. It receives the credit card number and other personal information of our donors only to verify credit card numbers and to process credit card transactions in a secure environment. Where your financial information is stored on our servers, access to this information is restricted to our authorised staff only.

13. Accessing or changing your personal information

We take reasonable steps to make sure that the information we collect and use is accurate, up-to-date and complete. You may contact our Fund Development Officer at any time if you wish to:

  • change or correct your personal information (for example address or telephone number)
  • cancel some or all of the communications that we provide (we include opt-out mechanisms on the majority of our communications)
  • request access to the information that we hold about you
  • request further information about our privacy policy.

14. Questions and complaints

If you have any questions, concerns or complaints about the way in which we have handled your personal information, please contact our Fund Development Officer.

Once we receive a complaint, we will respond to you as soon as possible and will let you know if we need any further information from you. We will notify you of our decision within 30 days, however, if we are unable to do so, we will let you know the reason for the delay and the expected timeframe for resolving the complaint.

You may also lodge a complaint with the Office of Australian Information Commissioner, for more information visit

15. How to contact the Fund Development Officer



Victor Chang Cardiac Research Institute
PO Box 699
Darlinghurst NSW 2010

Telephone 1300 842 867

For a copy of our full privacy policy, please click here.

Updated: March 2014