Since it's formalisation as a Health Promotion charity in 2004, Hearts of Hope Australia has engaged in a broad range of activities to deliver assistance and provide support to children born with complex Congenital Heart Disease, and to their families. The programs we have implemented and examples of the assistance we provide are outlined below:
- Community Education and Awareness (CEA)
Distribution of Information Brochure
- In-Patient Assistance (IPA)
Care packs for families living away from home
Gifts for gravely ill children
- Medical Equipment Assistance Program (MEAP)
Coaguchek for children on Warfarin therapy
- Medical Research Funding (MRF)
Donations to the MCRI to support various research initiatives including the Fontan Registry
- Support Group Services (SGS)
Family Events and Functions
HoH Website Resources
Please open the tabs below for more details about our programs.
Even though 1 in every 100 children is born with a heart disease, the level of community awareness of such conditions remains very low in comparison to other childhood diseases. Raising awareness, so that there is a better understanding of complex congenital heart disease in the broader community is a primary goal of Hearts of Hope Australia.
We address this issue by publishing an information brochure (pdf) for distribution to hospitals and the broader community.
We also encourage our member families to have their stories presented to the public through popular media such as newspapers, magazines and TV current affairs programs. Please see our “Tips on how to get a good story” for more information.
Please contact us if you you can assist with the circulation of the HoH Brochure.
Let us know where you intend to circulate the brochures and the quantity you require.
Sufferers of complex congenial heart disease may require hospitalisation for medical tests, procedures and surgery on many occasions throughout their life. Many families are required to spend extended periods away from home while their children undergo lifesaving surgeries.
The In-Patient Assistance program was put in place to help families while they settle in to their new surroundings. This assistance is in the form of providing care packs containing essential goods (food hampers, toiletries etc.). As funding allows, we can also provide food shopping vouchers and other financial assistance to help defray the living, travel and accommodation costs.
Nominate a child or family for assistance.
If you know of a child that is either in hospital now or will be in the foreseeable future, please let us know so that we can provide assistance and support.
The quality of life of sufferers of complex congenital heart conditions can be considerably enhanced by ensuring they have access to equipment that allows better control of their condition. Hearts of Hope Australia introduced the Medical Equipment Assistance Program to help meet these needs.
- Equipment such as Coaguchek instruments for home monitoring of INR are provided to children through this program. The purchase of such medical equipment is targeted at areas of greatest need and will be funded primarily through grant applications and fundraising events carried out in the region where the equipment is required.
- In addition to providing medical equipment for personal use, MEAP also includes the purchase equipment for health care providers such as Cardiac Wards, Intensive Care Units, and Clinics etc. Such purchases are made as needs are identified and funded through specific fundraising activities.
For more information about the HoH Medical Equipment Assistance Program please download our the MEAP Information Pack and Application Form (pdf) via the buttons in the right margin.
Nominate a child or family for assistance.
Please download the MEAP Information Pack and Application form for more details about this program. If you know of a family or child that is in need of medical equipment, please nominate them for assistance.
Medical research can significantly improve the quality of life of sufferers of congenital heart disease. HoH reserves 10% of funds from charitable collections to support organisations that carry out research that helps improve mortality rates and the quality of life of the survivors of complex CHD’s.
We are always interested in hearing about research initiatives that will benefit those affected by complex congenital heart disease. Please let us know if you know of any research projects that HoH can support.
Nominate a Research Program or Study for assistance.
Please let us know of any current research that you believe would lead to improving the lives of childres born with CHD.
HoH support services have been put in place for all sufferers of complex congenital heart disease and those that care for them. HoH engages in a variety of activities to support children and their carers including:
- Bereavement Support
As some children do not survive the heart conditions they are born with, HoH believes that bereavement support is an integral part of the services we provide to families. We do this through our ‘Angels’ email support group'. From time to time we purchase items such as Christmas tree decorations for families in memory of the children that have lost their battle. We also hold an annual balloon release ceremony to commemorate the passing of these children.
- Children’s Gifts
HoH provides gifts to gravely ill children to help alleviate their distress and suffering.
- Family and Children’s Events / Functions
We can provide funding for family get-togethers to encourage social interaction of all members of the community affected by complex Congenital Heart Disease. Members can also promote their events via the HoH Events Calendar.
- HoH Newsletter
Newsletters featuring family stories, photos and other information to help support families that have children with complex congenital heart disease are published from time to time. The newsletter content also makes it very suitable to support our aims to raise awareness of Congenital Heart Disease in the broader community. Additionally, electronic newsletters are sent to our members to keep them up to date on the organisation’s activities. Contributions to both the print and electronic newsletters are made by our members.
- HoH Website Resources and Online Services
The HoH website provides up to date and accurate information about complex Congenital Heart Disease such as Hypoplastic Left Heart Syndrome. It also serves as a portal to HoH member services.
- Telephone Support Services
Telephone support service plays an important role in helping parents advocate for their children. Hearts of Hope Australia has a team of volunteers that are available to assist parents that are in need of support and information.