Fundraising

Information

Information Sheets

The forms below may assist you when your child starts childcare, preschool or school.

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Research Articles

Kidz4Heartkidz

Kidz4HeartKidz is a support group for HeartKids and their siblings within HeartKids Qld Inc.
Our slogan is “Kidz Empowering HeartKidz”.

We would like to organise gatherings and excursions with HeartKidz and their siblings and create a place with friends that understand what you are going through.

If you would like to join us in some fun activites please have Mum or Dad email to the link listed below.

To join, please have Mum or Dad complete the Kidz4HeartKidz Membership Form and send to:
Kidz4Heartkidz Membership Form
Kidz4Heartkidz
P.O. Box 118
Underwood. Qld 4119

Email:
Make sure you check the website each quarter for the Heartkids Newsletter for what’s happening with Kidz4Heartkidz and make sure you let us know what you need.

Kidz4HeartKidz Photo Album

image

Fun Fairies, left to right Paige, Taylor and Mel

December 06, 3 teenagers with remarkable similarities met for the first time at the Prince Charles Hospital.

Paul hails from Moranbah (central QLD), Yannis from Mossman (FNQ) and Alex from Grafton (NSW). All were born with Tetralogy of Fallot, repairs when they were babies.

Paul, and Alex had their repairs at the Prince Charles Hospital, while Yannis had his surgery in the UK.

The 3 budding sportsmen – Paul (rugby league), Yannis (surf life saving) and Alex (hockey), all received donor pulmonary valve replacements in this round of surgery.

Yannis had a total of 24 days in hospital, Paul 11 days and Alex was out in 8.

Adult CHD

“Once a HeartKid, Always a HeartKid”

With more and more children surviving heart disease, but having to live with the treatments, operations, uncertainty etc, HeartKids felt there was a real need to meet the needs of this group.
Our first ever (that I know of) adult CHD get-together was held at the beginning of October 2006 beside the river at Toowong Rowing Club. Grown-up heatrkids Nick Frassetto, Bronwyn Bird, Jarod Moseley, Paul Higgins, Kelley O’Donohue and Michael Toon along with Michael’s mother and Heartkids Vice-Pres Lindy gathered in perfect spring weather for a BBQ and a few drinks to chat about anything and everything as well as, naturally growing up and living as an adult with heart disease.
The event was a success for the small but dedicated group that kicked this group off, with special mention to Jarod who drove up from the coast for it and to Boston, Michael’s labrador puppy who provided most of the entertainment.

image
The lunch was very relaxed and enjoyable. It is hoped we can turn a small, friendly, diverse group into a large, friendly, diverse group that can not only provide friendship and support for each other but a significant lobby group to make positive differences in adult CHD services as well as maintaining inspiration and support for the Heartkids following in our footsteps!

So don’t be shy, if you want to join our online forums or meetings just give us a call or email:
Co-ordinator: Kelley O’Donohue
Mobile: 0413 083 815
Email:

  • Heartkids Qld forum
    A place to come and chat to other people with ACHD and share your experiences

Read a few of our stories at Grown up Congenital Heart Stories

This group aims to meet regularly, perhaps bi-monthly (every two months) at a hotel on a Sunday for drinks to maintain friendships and form new ones. If you are interested in being on the e-mailing list for notification of events and news for this population send you details through to heartkids.

Great sites for additional support and information:

How to become a Partner/Sponsor

As a Charity with both State and National offices we welcome partners/sponsors at both levels.

HeartKids Queensland recognises National Fondation Partners as well as Gold, Silver and Bronze State Partners

Campaign and Event Sponsorship

Through out the year HeartKids holds various campaigns including Stick on a Smile, Gala Balls and other fundraising events. These can be sponsored on either a state or national level.

Equipment or Research Sponsor

With HeartKids making up the majority of admissions into Intensive Care Units around the country, there is always a need for new equipment. At HearKids we can direct your sponsorship dollars directly to the area you would like to contribute. This can range from beds to tv’s to cardiac monitoring equipment. OR if you prefer we can channel your donations specifically into research.

Create your own event at work or your mother’s group.

There are a number of ways you can raise funds independantly for HeartKids, each state offers their own unique angle on what’s fun to do, or you can simply make up your own.

Corporate Membership

HeartKids Corporate Membership is State based and is open to all businesses, associations and organisations.

In today’s competitive world, it’s important to get the balance right. Lending your organisation’s support to a worthy cause like HeartKids not only builds your reputation as a ‘good corporate citizen’, it makes your staff and clients feel positive about you, so they’re more likely to want to work for, and with, you.
Aligning your company with HeartKids gives your company the chance to promote your commitment to social responsibility and share the opportunity to express that commitment with your staff.

By taking up the opportunity to make a difference, your staff will not only gain great satisfaction, they’ll have the chance to build better relationships with their colleagues, utilise their skills in a new and positive way, and perhaps demonstrate some new skills that will build their own reputation and regard within the workplace.

Corporate Membership offers you:

  • Corporate Certificate Membership Registration ready for framing
  • Guide to Workplace Giving Program
  • Priority registration at corporate fundraising events
  • Employee Information Kits
  • HeartKids Merchandise Box with donation tin for $200

Corporate Membership fees:
Bronze: Businesses with 0-20 employees $400 per annum
Silver: Businesses with 21-99 employees $600 per annum
Gold: Businesses with over 100 employees $800 per annum

Membership is subject to approval in accordance with the rules of HeartKids Queensland.

If you would further information please contact HeartKids on 07 3341 8145 or email:

Associate Membership

HeartKids Associate Membership is State based and is open to all interested persons.

  • Any interested person

Associate Membership Annual Fee $27.50

Associate Membership offers you:

  • A seasonal Newsletter available on the HeartKids Qld Website keeps you informed and updated.
  • Opportunities to participate in your areas of interest.

Membership is subject to approval in accordance with the rules of HeartKids Queensland.

General Membership

HeartKids membership is State based and is open to individuals and families as follows:

  • Persons with congenital or childhood heart disease
  • Parents or guardians of a child with pediatric heart disease
    General Membership Annual Fee $27.50

Click on the link below to download the form.

Membership Form Heartkids Qld

General Membership offers you:

  • A seasonal Newsletter is available on the HKQ website to keep you informed and updated.
  • Family Support Coordinator – present in the Mater Children’s hospital to offer you support at critical times, by phone and email as required.
  • Regular coffee mornings so that you can meet and share experiences with other families, these are held in the Mater Children’s hospital every Tuesday and Thursday morning. We also encourage you within your local area to host regular coffee mornings this helps to develop a local network of support for you and your families.
  • Opportunities for your heart child to attend events with other heart children
  • Opportunities to attend special afternoon or evening information events by invited medical practitioners and other professionals as they arise.

Membership is subject to approval in accordance with the rules of HeartKids Queensland

In order to overcome the confusion in regards to the Heartkids Qld membership, the following clarification has been made by the Board of Management.
Your membership runs from January 1st to December 31st each Calendar year as per our financial reporting.
This in effect means that all membership fall due on 1st January each Calendar year. An example of this would be if you joined Heartkids in October 2007 that payment is recorded as your 2007 membership, with a further $27.50 due on January 1st 2008.
The Board hopes this clears any confusion in regards to Membership, and they believe this will reduce administration cost and allow more resources into establishing greater benefits and services to Heartkids and their families.

Volunteers

HeartKids Queensland offers a wealth of opportunities to become involved as a volunteer – fundraising activities, supporting one of our functions, providing secretarial and office work to help our small team, or even supervising kids at Teens Camp… whether you spend hours a week, or an hour a year or as a ‘one off’, all of it is appreciated.

Queensland provides support, advocacy, equipment and research for kids with heart disease and their families, but it is volunteers like you who make it possible.

Together, we can make a real difference. Call HeartKids Queensland on (07) 3341 8145 .and learn more about how you can help and don’t forget to tell others about us and help spread the awareness that will ensure better outcomes for all HeartKids.

home page sponsor logos

Bundall Store
Robina Store
James Home Services

home page text

Our aim is to provide useful information and avenues of support for families of heart children.

Please browse the site for information on:

  • Our support services
  • A list of our partners and supporters
  • Upcoming events and regional news
  • Our contact details and membership details and,
  • Your Stories generously shared by the families affected by CHD.

Thank you for getting in contact with us

Enquiry Pack

Disclaimer

Please remember that the opinions expressed in any article herein represent personal experience only. MEDICAL DETAILS ARE SPECIFIC TO EACH INDIVIDUAL CASE AND MAY NOT BE APPLICABLE TO ANOTHER CHILD. Parents who require more specific information should check with their child’s own Cardiologist.

Also, please note, that the opinions expressed in the articles herein, are those of the author and do not necessarily represent the beliefs or opinions of the committee of Heartkids Nsw Inc.

Further Disclaimer:

Graphics found on this site were not created by the webmaster. They were obtained from various sources on the internet that labeled them as “freely distributable”. If you should discover images in this collection which you recognize as copyrighted, please email the immediately so that they may be removed.

Useful and Interesting Links

QLD Links

Australian Links

Overseas Links

Adult Congenital Heart Defects

Childrens Congenital Heart Defects


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Patient Associations

National Organisations

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Sad Links

Sadly, sometimes heart children die.

Sometimes families and friend no matter how much they might wish to, can’t be the one you need to turn to. You may not have lost your child but maybe a friend has and you want to help but can’t quite find the place to start. The following are links to sites in both Australia and overseas that have been started to help families, both parents and siblings who have lost a child.

We wish that we did not have to add these links but are very grateful that we are able.

Sids and Kids QLD is an organisation that offers grief/bereavement counselling to families who have experienced the sudden and unexpected death of a child up to six years of age; there are groups also in the Hunter and other states of Australia. This site was suggested by a member who has used it and found them to be helpful.

M.I.S.S. Foundation in the USA was started by Joanne Cacciatore after the death of her daughter. There are lost of different areas on this site and it is the place of the well known kindness project. While checking this site over I found it a little sad, informative, complex and surprising to me, very uplifting. I have ‘spoken’ with Joanne via email and found her to be a very lovely woman who was pleased to be asked to be a link on our site.

The Compassionate Friends was founded in Coventry, England, in 1969, by Rev. Simon Stephens, Assistant to the Chaplain in the Coventry and Warwickshire Hospital. Simon noticed that the intensity and duration of parental grief was much greater than that of others who lost loved ones. He brought together two couples whose children had died at the same time, hoping they might comfort one another. It worked; each parent understood the pain the others were going through, and they were able to support and help one another as no one else could do. In time, the two couples reached out to other grieving parents, and The Compassionate Friends was founded. Compassionate Friends has Australian Offices.

Further telephone contacts are:

  • Kids Help Line: 1800 55 1800
  • Lifeline: 131 114

Our Contact Details

Queensland

HeartKids QLD Inc.
Phone: 07 3341 8145
Fax: 07 3341 5460
Post: P.O. Box 118 UNDERWOOD QLD 4119
Email:
Web: heartkidsqld.org.au

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State Manager

Family Support

Hospital Support

Kidz4heartkidz

Adult Congenital

Newsletter

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Our Branch Contacts:

  • Brisbane Southside: Paul (07) 3800 6012
  • Brisbane Bayside: Anne (07) 3822 4327
  • Brisbane Westside: Monica (07) 3376 3583
  • Brisbane Northside: Bronwyn (07) 3882 2472
  • Sunshine Coast Amy (07) 5452 5646
  • Hervey Bay Susan (07) 4128 7401
  • Bundaberg Wendy (07) 4156 1083
  • Gladstone Gail (07) 4973 9242
  • Rockhampton Robi (07) 4926 5495
  • Whitsundays Leah (07) 4947 1751
  • Townsville/Mt Isa Leanndra (07) 4776 5399
  • Cairns Lyn (07) 4054 4726 or 0417632501,
  • Goondiwindi/Remote Qld Carolyn (07) 4671 0195
  • Northern NSW Carol (02) 6621 8637

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HeartKids Australia

HeartKids Australia Inc.
PO Box 204
WAHROONGA NSW 2076
Email:

For any Vending Machine enquiries contact Lisa White on:
Email:

Please call during work hours or leave a message on our phone line and you will be contacted within 24 hours.
Office: 02 9487 8256
Web: heartkids.org.au

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HeartKids State Organisations in Australia

New South Wales

HeartKids N.S.W. Inc.
Phone: 02 9294 0800
Fax: 02 4423 5812
Post: C/-Adolph Basser Cardiac Institute
Children’s Hospital Westmead
Locked Bag 4001
Westmead NSW 2145
Email:
Web: heartkidsnsw.org.au

Western Australia

HeartKids W.A. Inc.
Phone: 08 9340 7996
Fax: 08 9340 7997
Post: P.O. Box 1554 WEST PERTH W.A. 6872
Email:
Web: heartkidswa.org.au

South Australia

HeartKids S.A. Inc.
Ph: 0406 165 111
Post: PO Box 364 North Adelaide SA 5006
Email:
Web: heartkidssa.org.au

HeartKids Victoria including Tasmania

PO Box 803
Parkville VIC 3052

Email:
Web: www.heartkidsvic.org.au

Phone: 03 9513 9030
Fax: 03 9345 6001
This is a message bank service, please leave a message and we will return your call promptly.

Northern Territory

Heart Kids N.T.
P.O. Box 848
Palmerston N.T. 0830

Merchandise

HeartKids is currently running a number of fundraisers to help us continue our support programs and raise awareness about congenital heart defects. To order please call (07) 3341 8145 . Please pass on to your friends, family, work colleagues or anyone who may be interested.
We stock a range of items ranging from pens to shirts and hats..

  • With All Our Hearts 2008 HeartKids Calendar

Partners/Sponsors

We want to take this opportunity to thank the following organisations for their support of HeartKids QLD.

Gold Partners

The Good Guys

Good Guys – Bundall and Good Guys -Robina

Silver Partners


Lamelec Australia The Mortgage Gallery


Brisbane Convention Centre




Grapeshot Studios

  • The Joseph Family

Bronze Partners

United Way Queensland

Foundation HeartKids Australia National Partners

Manchester Unity Pasta Master
St Jude Medical Kiwanis Beaver Machine Corporation

How to become a Sponsor

As a Charity with both State and National offices we welcome sponsors at both levels. For details on how to become a sponsor at a State level please contact us directly.

Email:
Phone: 03 9513 9030
Fax: 03 9345 6001

How to Make a Donation

You can help HeartKids make a difference in the lives of children with heart disease by generously donating. This will continue our vital services of supporting these children and their families as well as raising funds for research and items of need in the Cardiology areas of Children’s Hospitals in Queensland.
You can make a donation via our secure website or by post.

Online Donation – click on the logo

Postal Donation – Please complete this coupon, enclose with your donation and mail to: Post: P.O. Box 118 UNDERWOOD QLD 4119 or fax 07 3341 5460
DONATION_SLIP_QLD.pdf

Bequest

What is a bequest?
A bequest is a gift that can be either named or anonymous. It is contained within a Will and specifically reserves part of an estate for a particular beneficiary.

A bequest may be:

  • a sum of money from your estate
  • a fixed percentage of your estate
  • the residue of your estate
  • shares, bonds, life insurance policies, artworks
  • other personal property

Whilst we are mindful of the personal and sensitive nature of a Will, HeartKids appreciates knowledge of your intention to provide for HeartKids in the form of a Bequest so that we can thank you in your lifetime. All correspondence and information will be held in the strictest confidence.

HeartKids and bequests
HeartKids relies on the generosity of the community in order to run our activities for our Heartkids and their families. Leaving a bequest to HeartKids will ensure that these services continue to support our children and their families living with congenital heart disease.

A Bequest to HeartKids
For more information please contact HeartKids Queensland, on (07) 3341 8145 or by email:
Email:

Membership

General Membership

Associate Membership

Corporate Membership

Facts about Childhood Heart Disease

Incidence of Childhood Heart Disease (CHD) is far greater than most people expect. Although it comes as quite a shock to family and friends alike, an astounding 6 babies each day in Australia are diagnosed with heart disease! Cures remain predominantly unknown and little in general is known about the disease and its causes. Therefore we need your help to assist in addressing this situation

Common known facts about CHD include;

  • Heart defects are present in 1 in 100 babies.
  • Heart defects are the most common birth abnormality.
  • Heart disease in children is the leading cause of young children death in Australia, accounting for more than 30% of all childhood deaths.
  • CHD takes more lives than all other childhood diseases combined.
  • More than 2015 babies are born in Australia each year with a heart defect.
  • Childhood heart disease is no fault of the parents or the child.
  • The severity of defects in heart children can range from a hole in the heart, to a highly complex combination of conditions.
  • Up to 20% of heart defects are gene-linked abnormalities, but for the remaining 80% the cause is largely unknown.
  • More than half of these conditions are serious enough to require treatment through medication or surgery – sadly some cannot be repaired.
  • Cures of these heart conditions remains unidentified, therefore there is an immense need to develop early intervention strategies to identify and prevent heart disease in children.
  • Heart disease is the most common reason for admission of Australian children to intensive care units with more than 1300 being admitted each year.
  • The term ‘congenital heart defect’ refers to an abnormality of the heart, which is present at birth. It has nothing to do with diet or obesity.
  • Heart valve replacements come in 3 forms: homographs (valves from humans) tissue valves (from cows or pigs) and mechanical man-made valves.
  • Some children acquire heart conditions during childhood, eg cardiomyopathy, Kawasaki disease or as a result of rheumatic fever.
  • A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is rampant in many communities.
  • Heart Transplants are much more challenging for children as their immune systems are not fully developed.
  • The only Paediatric transplant unit in Australia is at the Royal Children’s Hospital, Melbourne.

More than 4 young Australians will die this week as a result of congenital heart disease.
Will you help to save them?

Sources:
Australian Institute of Health and Welfare
Australian Bureau of Statistics
American Heart Association

Annual Reports

Annual_Report_2008_PDF.PDF

Our partners

coming soon

HeartKids Queensland - Board of Management

Board members are elected at the Annual General Meeting. Most of the Queensland Board members are parents of HeartKids who are concerned with the high incidence of congenital heart defects. All Board members are voluntary who donate their time and experience to support HeartKids Queensland in its goals.

HeartKids QLD Board of Management & Staff 2008-2009

Chairperson: Janis Pratt
Vice Chairperson: Emma Hodgkinson
Secretary: Mary Crisp
Treasurer: Darren Pratt
HKA Board Member Jean-Jacques Lasm

Our Staff

State Manager: Janis Pratt
Family Support Coordinator: Silvia Stohr

Corporate Address:

Suite 1,
2908 Logan Rd.,
Underwood,
Qld 4119

Postal Address:
PO Box 118
Underwood,
QLD, 4119

Corporate & Office Administration & Family Support:

Ph: (07) 3341 8145
Fax : (07) 3341 5460

Our History

Over 25 years ago, ‘HeartKids’ was born of the passion of a few families who had experienced the kaleidoscope of emotions associated with having a child with congenital heart disease.

In the ensuing years HeartKids offices were established in the various states in Australia, with management and a team of Family Support Coordinators able to support families, all backed by a board and a group of committed volunteers.

In 2004 sixteen delegates at the annual conference unanimously supported the proposal that an alliance of state associations be created to form an Australian HeartKids group, and that its name be ‘HeartKids Australia’ (HKA).

An Interim Board was established to support and guide the working party, and oversee Heartkids Australia’s progress.

The journey into 2006 saw HeartKids Australia adopt a constitution, become incorporated, develop its corporate identity, raise funds for research and form alliances with a range of related organisations, sponsors and supporters.

Recent Developments

In June 2007 the appointment of the new full-time Chief Executive Officer was confirmed and the National Office of HeartKids Australia began operating.

In August 2007 a part-time Chief Financial Officer was appointed. This person is contracted to fulfil both HeartKids Australia and HeartKids State Organisations work.

At the July 2007 National Conference we confirmed our Vision, Mission and Core Focus areas.

At the National Conference it was agreed that the organisation should review its governance structure to allow for a mix of representational and skill based directors.

These changes were endorsed at a Special General Meeting held on 27 October 2007.

HeartKids is currently experiencing a very exciting phase in its history as it moves to become the ‘public face’ of chidlhood heart disease. If you would like to suport us or be part of this process, please contact HeartKids Queensland on 07 3341 8145

Our Vision and Mission

Our Vision

Embracing the future for HeartKids.

Our Mission

Australia will have a reduced incidence of children with heart disease, a reduced mortality rate in children affected by heart disease and significant support will be provided to HeartKids and their families.

This will be achieved through the development of: Research, Support, Awareness and Advocacy.

Who We Are!

HeartKids is a support group for families of children with heart disease, be it congenital (born with) or acquired. We started as voluntary group of parents and individuals dealing with and concerned about the day to day realities of raising and caring for children with cardiac conditions, and sometimes dealing with the loss of a child due to their congenital heart defect. We have grown to an organisation of some strength with a presence in almost every state of Australia, as well as a National body – HeartKids Australia.

Our members wish to offer their support to other families who are in crisis, providing opportunities to share common anxieties and challenges. We arrange, where possible, to meet with other families affected by the impact of life with a child with a cardiac condition and to create a ‘network of support’ for all families.

Over the years, HeartKids Queensland, with the help of members, sponsors and friends, has been able to help out the children’s hospitals by way of donations of money, equipment and research grants.

HeartKids has several regional representatives who offer their time to arrange coffee mornings and special activities in order to support families with a child with congenital heart disease. Telephone support is also offered. Our aim in this area is to ensure that parents aren’t struggling alone.

HeartKids’ produce a seasonal newsletters which update and inform our members on patient progress; special ‘heart family’ activities; government policy information of relevance, upcoming events and much much more. HeartKids news keeps our geographically diverse membership aware and ‘close’.

HeartKids can assist with information about your hospital stay, for example information on available accommodation, meals, and transport and parking. We can also assist with information on the availability of certain hospital services such as social workers, occupational therapists, and speech pathologists.

Most valuable to our families during the crucial time of surgery is our Family Support Co-ordinator. These co-ordinators are ‘heart mums’ and understand more than most what families are experiencing during the often tension filled hospital stays.

As well as offering support to families, HeartKids aims to increase awareness in the general community and corporate sector about the high incidence of congenital heart defects and its ongoing consequences.

A Team of dedicated staff
Family Support Program
Community Awareness
Website
E-Newsletter
Fundraising & Events
Research
Adult Congenital Heart Survivors (ACHS)
Information
Kidz4HeartKidz
Membership Packs
Advocacy
Parents Lounge Catering
Teen Camp
Emotional Support

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