Quarterly Magazine for Victoria and Tasmania
* Sweetheart Day Award * Family Camp *
Volume 26 Issue 3
One HeartKids Update
Matters of the Heart State Manager
By the time our Spring Magazine has gone to print, and you are settling in to read it, HeartKids would have completed most of its major changes that have been evolving throughout this year. Perhaps the most significant change is that we have appointed our “inaugural” HeartKids Limited CEO, Mr Mark Brooke, who has taken up this position after extensive experience as the national CEO of The Asthma Foundation. One of the early commitments made under the new national model was to deliver a National Teen Camp. It is very exciting that this will be occurring at Rottnest Island, just off the coast of Perth, in January 2017. On a more local front Family Support continues to do its amazing work headed up by Tracy Stanley and her team, which includes all our volunteer Branch Coordinators both in Victoria and Tasmania. As we start the run into Christmas please look out for a few of our very special activities including the Christmas Party for Special Children which again will be held at Moonee Valley Racecourse on 11 December. Sherrie McDonald and Lynette McCoullough are teaming up to start work on our National Sweetheart Day Campaign in February. Please look out for it and if you are able to participate, Sherrie and Lynette would welcome you. Another one of Sherrie’s projects, when not at Koala Ward, RCH or MonashHeart, is to work with a number of our Branch Coordinators to implement one of our newer member based fundraisers…Two Feet and a Heartbeat. Again, please look out for it on our website and Enews. One more major activity that you will also see more of in the near future will be our 2017 Super Boss Day Campaign. Luisa Kenos is our “Super” resource delivering this major fundraiser. This is a great fun activity so if you are in a workplace feel free to encourage their involvement and “dob in your boss”. Finally, and on a more personal note, in late September we said goodbye to one of our Staff Team members Sandra Zlatanovski who has taken up a role elsewhere. Sandra was a dedicated HeartKids Staff member who helped to significantly shape a number of our activities such as Super Boss Day, Two Feet and a Heartbeat, together with producing our Enews (which she will do offsite for a little while longer). We wish Sandra all the very best and thank her for her outstanding contribution. Kind regards Norm Norm Hutton State Manager
Front cover: Badger Creek Fire Brigade Volunteer Matt Thomas with Spiderman on dress-up day at the Family Camp Photo courtesy of Capture Mates Photography Thanks to all who sent photos and information for this edition. Contributions are always welcome - send to: firstname.lastname@example.org s. Thanks to Fuji Xerox and Documents On Call for printing our magazine images. digital some of g processin post for Patullo Thanks to Gordon
Our Team HeartKids Vic Inc Board 2015-2016 * Chairperson: Tania Tytherleigh * Vice Chairperson: Paul Lunardi * Treasurer: Anthony Flapper * Secretary: Robert Cugno * General Board Members: Erin Cervelli David Cervelli Anthony Mahady
HeartKids Vic Inc Employees * State Manager Norm Hutton 0409 874 452 email@example.com * Family Support Manager Tracy Stanley 0478 091 773 firstname.lastname@example.org * Family Support Coordinator Sherrie McDonald email@example.com * Youth Support Coordinator Rebecca Peters firstname.lastname@example.org * Family Support Coordinator Helen West email@example.com * Member Support Officer Lynette McCoullough firstname.lastname@example.org * Member Support Officer Margaret Patullo email@example.com * Finance and Administration Officer Jason Alabakis firstname.lastname@example.org * Business Relationship Manager Luisa Kenos email@example.com * Magazine firstname.lastname@example.org
HeartKids Vic Inc proudly supports children with heart disease and their families throughout Victoria and Tasmania. For Tasmanian enquiries - please refer to the back page for our Tasmanian Branch Coordinators’ contact details.
Permission to reprint any of the personal stories in this magazine is required from the author or the Chairperson. Any other articles may be reprinted with an acknowledgement to HeartKids Vic Inc. Please note that articles published in this magazine do not imply endorsement and may not reflect overall views of HeartKids Vic Inc. Also note that the opinions expressed in child stories represent personal experiences and that medical details are specific to each case. Although the conditions may appear similar to your child’s, other details may differ. Parents requiring more specific information should check with their child’s cardiologist.
Coming Events Aiden's Heart Awareness Family Fun Day Date: Sunday 6 November, Time: 10am-2pm Venue: Warragul Showgrounds, entry via Howitt Street Entry: $5 entry for 16+, under 16 free Aiden's Heart Awareness Family Fun Day annual market/fundraiser for HeartKids Vic/Tas; a fun event with something for everyone!
Off the Cuff Date: Friday 11 November 2016, Time: 1pm Venue: The Trust Restaurant, 405 Flinders Lane, Melbourne Please take this opportunity to join HeartKids and Jet Couriers at our next Off The Cuff Luncheon to hear our Special Guest Speaker Shane Jacobson, multi award winning actor and entertainer. Limited tickets are available for this special presentation by calling HeartKids 03 9329 0446 @ $95pp. Tables of 8 are also available. Other contacts: 0409 874 452, email@example.com
8th Annual Broadmeadows Car & Bike Show Date: Sunday 13 November, Time: 10am - 4pm Venue: Penola Catholic College, 29 Gibson St, Broadmeadows Entry $5; Kids under 12 free entry with an adult Come and join us to enjoy cars, bikes, sausage sizzle, drinks, music, kids entertainment and raffle. For more information please contact Luisa M: 0409 383 354 or Adam M: 0437 233 477
In This Issue
3-4 Coming Events 5 One HeartKids Update 5 Sweetheart Day Award 6-7 Isaiah's CHD Story 8 HeartKids Youth 9 Fontan Education Day 10 Congratulations! Volunteering 11 Fundraising Opportunities 12 Branch News 13 Tasmania News 14 Support Matters, MonashHeart News 15 Hospital Happenings 16-17 Reflections 18-19 Heartfelt Thanks for Your Support 20-21 Members Participate in Amazing Activities 22 Foundation Member Presentation 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates
Christmas Parties for Special Children Registrations for these Christmas parties have now closed. We can now only take waiting list registrations for places at the Melbourne Party. For more details, please view: • Melbourne: http://heartkidsvictas.org.au/events/?event=595 • Albury/Wodonga: http://heartkidsvictas.org.au/events/?event=621 • Launceston: http://heartkidsvictas.org.au/events/?event=608
The World Festival of Magic Show Various dates from 17 November to 2 December We can order tickets for you to attend these shows if you are a HeartKids member. Please express your interest in receiving a free ticket by registering on www.trybooking.com/NANZ • Albury – Thurs 17 Nov, 12.30pm & 4.30pm, Albury Entertainment Centre • Ballarat – Mon 21 Nov, 12.30pm, 6pm, Founders Theatre • Burnie – Tues 29 Nov, 12.30pm, 5.30pm, Burnie Arts Function Centre • Devonport – Mon 28 Nov, 11am, 5.30pm, Devonport Arts and Entertainment Centre • Geelong – Tues 22 Nov, 12.30pm, The Arena • Hobart – Sat 26 Nov, 1.30pm, 4pm, FGC Federation Concert Hall • Launceston – Fri 25 Nov, 12.30pm, 5.30pm, Door of Hope • Melbourne – Sat 19 Nov, 11am, 2pm, Melbourne Convention and Entertainment Centre • Mildura – Sat 2 Dec, 6pm, St Joseph’s College Stadium
Simple Pleasures Brunch Date: Friday 18 November, 9.15am-11am Venue: The Botanical, 169 Domain Road, South Yarra Tickets are $50, includes continental breakfast Book by 4 November at www.trybooking.com/226661 All funds raised will be used for running the twice-weekly morning teas held at The Royal Children's Hospital which provide support to families affected by childhood heart disease. Contact Details: • Nikki Cambridge firstname.lastname@example.org 0417 057 719 • Luisa Kenos email@example.com 0425 788 705
Hobart Christmas Party Date: Sunday 20 November 2016, 10.30am – 3:00pm Venue: Richmond Zoodoo Zoo, 620 Middle Tea Tree Road, Richmond, Tasmania HeartKids families are invited to join us at this event, which is for your immediate family ONLY. It is an ALCOHOL FREE EVENT Please book via www.trybooking.com/NIGB RSVP deadline is strictly Sunday 13 November Zoodoo is well known for its hands-on approach that lets you get closer to most animals than you ever thought possible. We will do a bus tour, see the animal presentations, a native tour to hand feed free roaming wallabies and kangaroos and we will have some special visitors. BBQ lunch will be provided – please bring a plate of nibbles or a salad to share. Please bring a wrapped, named Christmas gift for your child/children for Santa to distribute (maximum value $10.00). For further information please email Kaye Nugent on firstname.lastname@example.org
City2Sea - Sunday 20 November The 2016 Sunday Age City2Sea presented by Westpac is one of Melbourne’s favourite sporting events! With a great family friendly 5km event. Take on the Sunday Age City2Sea presented by Westpac and help us raise funds to improve the lives and futures of those affected by Childhood Heart Disease. Create your own fundraising page now and raise money for a charity close to your heart. The more families we have register, the more fun we can have as a HeartKids team! https://city2sea2016.everydayhero.com/au/heartkidsvictoria/get-started
Coming Events HK Youth Social - Sunday 27 November
Shepparton KidsTown Picnic
We have an upcoming HeartKids youth social event at Strike Bowling, Melbourne Central for young people with heart conditions aged 10 – 13 years. The afternoon will be a fun, casual chance to hang out, enjoy bowling and some lunch. These HeartKids youth social events are all about young people with CHD coming together to have some fun and a great opportunity to meet other young people with CHD. When: Sunday 27 November, 1.00–3.00pm, pizza provided Where: Strike Bowling Melbourne Central Cost: Free!! Places are limited, so get in quick! RSVP: email@example.com by 24 November Any questions or dietary issues, please don’t hesitate to contact firstname.lastname@example.org
Date: Sunday 2 April 2017 Time: 10.30am - 2pm Venue: SPC Ardmona KidsTown, Midland Highway, Mooroopna www.kidstown.org.au Courtesy of the Kiwanis Division 7 clubs, families with a heart angel or heart child are invited to attend a free picnic and family fun day. Free entry to KidsTown Adventure Playground and a sausage sizzle lunch will be provided. Register via www.trybooking.com/NPKP Enquiries about the day, contact Cheryl Alexander: email@example.com or 0408 547 418 Any problems with booking, contact Lynette on: firstname.lastname@example.org or 0418 548 879
Emma & Tom's Christmas Fun Run
Steam Locomotive Society of Victoria Fun Day 2017
Date: Wednesday 7 December, start times 6pm or 6.40pm Venue: Palms Lawn, Albert Park Lake A fun run can’t get more festive than Emma & Tom’s Christmas Run. Get into the Christmas spirit this year with Sole Motive’s Emma & Tom’s Christmas Run. End your year on a high note with a personal best, and kick off a summer of running this December by registering to join the HeartKids team. Choose from the 5K run/walk, 10K run or enter your child into the 2K Kids Rudolph Run!
HK Youth Xmas Social - 10 December This social event will be a fun, casual chance for all young people who are part of the HeartKids youth community to hang out, create some awesome cupcakes and get involved in the Christmas spirit. Date: Saturday 10 December Time: Two sessions for young people aged 14-20 years. • First session is 10.00am - 12.00pm • Second session is 1.00pm - 3.00pm Venue: Bake Boss Glen Iris, 59 High Street, Glen Iris, Victoria Cost: Free to all HeartKids Youth, but places are limited for the cupcake classes, so get in quick!!! RSVP or any questions, please contact: email@example.com by 24 November.
Sweetheart Day - 14 February 2017 Sweetheart Day, held annually on Valentine’s Day, raises muchneeded funds to provide support for Aussie kids with childhood heart disease as well as fund vital medical research. To raise extra funds for our Sweetheart Day in February next year, we would love your help to gather donations. • Save the date, 14 February and fundraise for us. • Register your workplace: https://www. heartkids.org.au/sweetheart-day-2017register-your-interest-2/ • Register your school: https://www.heartkids.org.au/ sweetheart-day-2017-register-your-interest/ • Request a donation tin for your workplace or local store, collect donations and return tin by 28 February 2017: www.trybooking.com/NLQF • Fundraise at shopping centres, train stations or city streets: www.trybooking.com/NAKP (for extra details see page 10)
Date: Sunday 23 April, Time: 9.30am - 1pm Venue: 128 Rowans Road, Moorabbin Thanks to the Kiwanis Club of Moorabbin, families who have a heart child or heart angel are invited to attend a fun day out at the Steam Locomotive Society of Victoria in Moorabbin. A free sausage sizzle lunch and free train rides will be offered. Register via www.trybooking.com/NQEO
Super Boss Day 2017 Save the Date: May 2017
Christmas Hampers for Families in Hospital
On Christmas Eve our Support Team will distribute hampers to families who are not able to be home for Christmas. We make 60 hampers for these families to be able to share some special Christmas cheer and show that we are thinking of them. Would you like to make a donation to assist in preparation of these hampers? Please deliver non-perishable items to HeartKids by Friday 16 December. If you are attending the Christmas Party for Special Children in Melbourne, please bring your donation to the HeartKids marquee, which is a dedicated area for our families to meet. If you prefer to drop in at the HeartKids office, please phone in advance to arrange a suitable time: (03) 9329 0446
For more information about any of these events or activities, check Facebook and our website Event Calendar: http://heartkidsvictas.org.au/events/
One HeartKids Update I'm thrilled to be able to update everyone as we have some really exciting news to talk about this month. The integration into one HeartKids is still being undertaken in a planned, steady and coordinated manner, and is now starting to gather real momentum. Firstly and most importantly, all of our great teams in Victoria and across Australia have now been asked to transfer across to the new HeartKids organisation on 1 November, so you'll be seeing all the same familiar faces to support you on a day-today basis. We are also really excited that Jan McClelland AM has accepted the role of Chair of HeartKids. Jan is an experienced chair and company director, chief executive officer and management consultant. She has held leadership, governance and advisory roles in government, not for profit and private sector organisations across a broad range of industry sectors including education and training, health, medical technologies, transport, waste and energy, primary industry, technology and professional services, consumer services, law, insurance and financial services. Based in Sydney, Jan plans to get around to all States as soon as possible. She will work closely with our new CEO to lead HeartKids into its next exciting phase. Which leads me to the next part of my update… we are also very excited that Mark Brooke has been appointed as the Chief Executive Officer for HeartKids, and will be formally joining us on 31 October. Mark has extensive experience in managing and leading a national not for profit organisation, has integrated a federated not for profit and has great established networks and relationships. Mark is based in Brisbane and currently leads a national team, based all across the country, from there.
Mark Brooke, CEO HeartKids Ltd
Similarly, he will be leading the HeartKids teams from Brisbane. With modern technology, video conferencing and some national travel, Mark will become a very familiar face in all our state offices. We would all like to congratulate both Jan and Mark on these two key appointments, and wish them all the best in these roles. I know both Mark and Jan look forward to working with you all as we build an organisation that marks a new era for supporting heart kids and their families, that can continue to provide support for more families and fund more research into the future. Jayne Blake Caretaker Chief Executive Officer, HeartKids Australia
Sweetheart Day Award HeartKids is excited to announce that our wonderful pro-bono media planning partners (Initiative) who support SweetHeart Day so effectively have been rewarded with a win at the prestigious MFA media comms awards. The Sweetheart Day 2016 campaign and Initiative recently won the MFA Award in the Pro Bono/Cause Marketing Category for their fantastic work on SweetHeart Day 2016 .... so a massive thank you has been given to the fabulous Nicki Willoughby and her team at Initiative for their work - and they are already busy working on Sweetheart Day 2017! The Media Federation Awards program is the pre-eminent Awards program in the advertising media communications industry in Australia. The purpose of the Awards is to highlight the value that the advertising media communication industry contributes to clients' businesses. The pro bono category focuses on the greatest
contribution and effort being made by the media industry to support charities, appeals, fundraising or various not-forprofit community programmes. Congratulations and thank you to Nicki, Linda & the rest of the Initiative team who worked so tirelessly on the campaign - a very well deserved recognition. Also a big thank you to our wonderful partners at UnLtd who introduced us to Nicki - without them, none of the great outcomes would have been possible! The Sweetheart Day 2016 30-second video featuring Ambassador Shane Jacobson has been featured on the Media Federation website: http://www.mediafederation.org.au/ mfa-awards/2016-awards/2016-awardwinners Jayne Blake Caretaker Chief Executive Officer HeartKids Australia
Sweetheart Day 2016
Show your heart this Sweetheart Day to fight childhood heart disease.
Event Date: Date & Time:
Event Location: Don’t forget you can send a personalised
Valentine’s card to your Sweetheart!
For more information visit:
MY FUNDRAISING PAGE LINK
Isaiah’s... Isaiah’s Congenital Heart Disease journey began like most heart child stories I have read, at the 20 week ultrasound. After two relatively “normal” pregnancies my wife Helena and I went in for what we thought would be a routine ultrasound at the Latrobe Regional Hospital. While Helena undertook the procedure I was entertaining the our two older children Xavier (aged 5) and Emmerson (aged 3) in and out coming hospital’s playground. I can still vividly recall Helena stating “There is something wrong”. We both went down to the Monash Medical Centre where our baby was diagnosed with a complex congenital heart condition. The was doctors explained our options to us and to our shock, termination we knew both we on presented as a viable choice. Without any hesitati the with that, nt confide were and would proceed with the pregnancy support of our family and the strength of our relationship, we could handle any outcome, either good or bad. Speaking with cardiologist Professor Sam Menahem after the initial diagnosis filled us with hope that there could be a positive outcome. Helena was scheduled for an induction at Monash Medical Centre Clayton at around 38 weeks and on 3 January 2007, Isaiah John Taylor was born. He was in such a hurry to come into the world that I missed the actual birth after heading out briefly for some lunch! At around 3kg birth weight he looked massive amongst the mostly premature babies in the NICU. Isaiah was born with a complexity of conditions including hypoplastic right heart syndrome, transposition of the great vessels, ventricular septal defect (VSD) and double inlet left ventricle (DILV) and much to our relief he did not require immediate surgery. His first operation was at three months of age in April 2007 when the first stage of the Fontan, the shunt banding, was completed. Complications from bleeding around his heart saw him rushed (his first plane trip) back from our home in the Latrobe Valley to Monash a few weeks later for follow up surgery.
...CHD Story Regular check-ups with Sam followed over the ensuing years and Isaiah finally had the Fontan operation aged 5½ on 29 August 2012 at The Royal Children’s Hospital. What a marvellous job the cardiac surgeons and staff do at the RCH. Amazingly we were home by 10 September (after just 12 days) and the only real issue since that time was a brief overnight stay in September 2013 to remove a bulging chest staple. With all the extra energy Isaiah now has, he can comfortably ride his bike, enjoy going to the beach and the swimming pool, play basketball and he even won his first football grand final playing for the Trafalgar U10’s last year. Just to run out on the football field was a massive achievement we never envisaged would eventuate.
Like any other 9-year old, Isaiah seems to have boundless energy at times. Other than the occasional check-up, his daily blood thinning medication, the odd night when he complains his legs are sore (normally after a very active day) and some “off” days where he feels lethargic, life is pretty normal. One thing we have learned from this experience thus far is to take each day as it comes and enjoy the simpler things in life. Paul Taylor
HeartKids Youth Supporting Young Hearts Health Forum
On 11 August I attended the Heart Foundation’s Supporting Young Hearts Health Forum for people aged 18-40 who have had a heart event, heart surgery or living with a heart condition. This event for supporting young hearts was the first of its kind and was hosted by the Heart Foundation. The day was well attended and it was great to see some familiar faces and meet some new ones on the day also. The forum included some fantastic speakers, who included: • Cardiologist Dr James Hare, Cardiovascular Services, The
Some of the Guest Speakers on the Panel
Alfred Hospital James gave a fantastic presentation explaining a wide variety of heart conditions, including congenital and acquired heart conditions. James was also very supportive of all who attended, including taking the time to be on the expert panel to answer some tough questions from audience members. • Exercise Physiologist Trent Malcolm, ACTIVEONE Health Professional Group Trent’s presentation was really engaging as a lot of the audience had concerns post-surgery or after heart events about exercise restrictions. Trent’s level of knowledge and experience was great as he provided an in-depth explanation about different training methods which would suit people based on their differing abilities. • Dietitian Sian Armstrong, Heart Foundation Victoria It was great to hear Sian speak about the importance of healthy eating. It’s not often you will hear a dietician speak at a cardiac forum so it was very refreshing to hear Sian’s presentation about what foods are recommended by the Heart Foundation. Overall it was a great reminder about the benefits of healthy eating.
HeartKids Youth Social
Our HeartKids Youth Committee hosted a pizza and games day at The Royal Children's Hospital on 7 August. If you would like to be advised about future youth events please contact firstname.lastname@example.org
• Psychologist Associate Professor Rosemary Higgins, Australian Centre for Heart Health, Cognicare and Deakin University Rosemary’s session was particularly engaging. She really involved the audience in her session which was viewed very positively by audience members as their thoughts and feelings were acknowledged during this session. Rosemary’s expertise and specialised work in the area of Psychology and her work at the Australian Centre for Heart Health made her a very valuable speaker. Her session was a highlight for many who attended. We thank the Heart Foundation for holding such a great event. It was a fantastic day which was extremely informative and very supportive. The Heart Foundation hopes to hold more days like these in the future, so make sure you check MyHeart, our Events Calendar and social media for more great events like these for young people to attend. Rebecca Peters Youth Support Coordinator HeartKids Victoria/Tasmania
MyHeart Facebook page
The HeartKids MyHeart Facebook Group is our official online community specifically for young people with CHD. If you are between 13 and 22 years of age and living with CHD, join MyHeart now at https://www.facebook.com/groups/myheartheartkids/ If you know a teen or young adult, please encourage them to join.
Fontan Education Day On Saturday 10 September 2016 the Australian and New Zealand Fontan Registry, in conjunction with HeartKids New Zealand, hosted a dedicated Transition Workshop for young people and their parents at Auckland University. The workshop covered topics that helped young people and their parents to learn more about their cardiac condition, how to manage stress, preparation for transition to adult care and the opportunity to share their stories and hear from the experts in Transition. The following day, Sunday 11 September 2016, the third Fontan Education Day was held at the University of Auckland. Education Day provides a unique opportunity to hear from specialists in paediatric cardiology and congenital heart disease. It was an informative day covering a range of topics: • The Development of the Heart – what went wrong and when • Parent View – Diagnosis Challenges • The Fontan Procedure – Fixing the plumbing • Liver Renal Study Results • Aspirin/Warfarin Study Results • Functional Outcomes – Cardiac Exercise MRI & CPX • Study Participation • An update about current research projects and what’s going on at the Registry • Muscling out traditional ideas about exercise for Fontan hearts • A Patient’s View – Living life and loving it • An update about the Fontan Advisory Committee • HeartKids New Zealand
There were breakout sessions including: • Pre Fontan – Preparing for surgery • Fontan in Adolesence • Long-term wellbeing – Strategies for dealing with the mental health implications of a long term health condition • Fontan in early Childhood – what do schools need to know • Fontan in Adulthood – Pregnancy, work and lifestyle implications The day finished with an Open Forum where attendees were able to ask the experts questions. The presentations will be uploaded to the ANZ Fontan Registry website http://www. fontanregistry.com/ Fontan Education Day builds on the good work of the Fontan Registry - an Australian and New Zealand database. This initiative is the world's largest database of Fontan patients, and it involves specialists and researchers working closely together to ensure patients and their families will benefit from the highest standard of evidence-based care and treatment. I always enjoy attending Fontan Education Day as it provides me with an opportunity to hear from experts in the field, the latest research and importantly, share patient insights and lived experiences. I look forward to attending next year’s Fontan Education Day in Brisbane and hope to see many of you there. Tracy Stanley Family Support Manager
Congratulations and our very best wishes to all these
families who have welcomed new babies in recent months. Marc Brooks and Sarah Rossiter are excited to announce the arrival of HK Oscar, born 23 January.
Paul and Jayne Behm are excited to announce the safe arrival of HK Jackson, born on 7 April.
Brendan McCoy and Elysia Nener proudly welcomed their HK daughter Zoe Anne born on 5 July.
Sher and Laurenda Jawan are pleased to announce the arrival of their long awaited handsome son HK Hakeem Nathaniel born 30 August. Younger brother of Izaiyah, Aqeel, Zakariyah and Aalayna.
Trent and Ashliegh Parsons are happy to announce the arrival of HK Elana on 28 September, a little sister for Julian.
Nicholas and Heather Simpson are delighted to announce the arrival of HK Indi, born 28 June. Little sister to Lily, Ruby and Jedd.
Alex and Sonia Taranto are pleased to announce the arrival of their precious baby girl Alessia Josephine born 6 October, a little sister for HK Lucas and Kiara.
In each edition of the magazine we like to welcome any new babies who were born recently. If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the magazine, please send us the details.
A very ‘Happy Birthday’ to all the heart children and their family members celebrating birthdays during Spr ing!
Tom's Inspiration Tom is eight years old and was born with Transposition of the Great Arteries, Ventricular Septal Defect, Coarctation of the Aorta and multiple holes in the heart. Here's a picture of Tom with Melbourne United basketballer Nate Tomlinson. Tom's family are members of the club. When they attended a club game this year they found that Tom loved it and he was super excited to meet his favourite player!
Please check the Volunteers page on our website to view current volunteer opportunities. http://heartkidsvictas.org.au/how-you-can-help/volunteering/ For enquiries please contact our Volunteer Coordinator, Lynette, on email@example.com or 0418 548 879.
IKEA Springvale – Face/Finger Nail Painting Various dates. Venue: 917 Princes Highway, Springvale VIC
Are you talented in face painting or finger nail painting and would you like to offer your services to paint the faces of IKEA customers in return for a gold coin donation for HeartKids? Then please register via www.trybooking.com/NPKR if you can help out 11am – 2pm on the dates below (you would be required to register at the IKEA office half an hour before the start time): • Weekends in December - Saturday/Sunday 3/4, 10/11, 17/18
Christmas Party Working Bee Date: Saturday 10 December, 10.30am – 2.30pm; Moonee Valley Racecourse We will be looking for volunteers to help pack up gift bags for our children under 3 years old, ready to be given out at the Christmas Party for Special Children the next day. Register via www.trybooking.com/NPKT
Christmas Party for Special Children Date: Sunday 11 December, 8.30am – 2pm; Moonee Valley Racecourse Man the desk at the HeartKids marquee, sell raffle tickets, hand out gift bags to the children aged under 3, other duties as required. Register via www.trybooking.com/NPKU
Sweetheart Day volunteers – expression of interest Sweetheart Day is on Tuesday 14 February 2017 and is a day when we celebrate our Heart Children and remember our heart angels. We need lots of volunteers to spread the word about HeartKids and raise funds in the days leading up to this day. The more the merrier – ask your family and friends if they will get involved too. You must be over 16 years of age to volunteer. If you are passionate about HeartKids and want to volunteer: • to help on a stall to sell merchandise and shake a money tin on Saturday 11, Sunday 12, Monday 13 or Tuesday 14 February at various shopping centres (Forest Hill, Waverley Gardens, Keilor, Broadmeadows, Epping, Victoria Gardens) OR • to sell merchandise and/or shake a money tin in the Melbourne CBD on Saturday 11 or Tuesday 14 February or at a local train station on Tuesday 14 February, please express your interest via www.trybooking.com/NAKP This is an expression of interest only and you will be contacted once all details are confirmed.
Acknowledging Recent Volunteers Thanks to the team of volunteers who attended the recent Family Camp from 'setting up to packing up' - it was a great success!
Fundraising Opportunities Rotary Raffle Would you like the opportunity to park a bran
d new car in your driveway? The Rotary Club of Ballarat South is conductin g its annual Community Raffle to raise funds for charitable organisations. This is a great opportunity for us to raise much needed funds - the cost of ticke ts is $2.00 and we retain 80% of all tickets sold. • 1st Prize - Ford KUGA Ambiente 2WD Auto
$34,487 inc On Road Costs (ORC) • 2nd Prize - Ford FIESTA Hatch Ambiente Manu al Hatch $19,082 inc ORC • 3rd Prize - Harvey Norman Homeware Vouc her $5,000.00 Tickets on sale now - please contact sherrie.mc firstname.lastname@example.org to order tickets. Raffle drawn at 12:30pm at The Ballarat Showgrounds on Sunday 12 February 2017.
IKEA Christmas Cards Our Christmas cards don’t just look good, they do good! Each box contains 10 seed-embedded HeartKids Christmas cards and matching envelopes. Each card contains a heart shaped piece of seed-embedded paper that can be removed and planted to grow Australian native Swan River Daisies. Box of 10 seed-embedded HK Christmas cards @ $10 per box. To order please complete the Christmas Card Order Form on our website. Go to http://heartkidsvictas.org.au/ and then click on the followin g: • How You Can Help • Buy Our Merchandise • Christmas-Card-Order-Form.pdf Cards can be sent to you or collected from our office in North Melbou rne.
Seed-embedded Christmas Cards Pack of 10 cards and envelopes. Each card contains special paper that can be planted to grow Swan River Daisies. All proceeds from the sale of these cards go towards improving the lives and futures of those affected by childhood heart disease in Australia. Visit our website heartkids.org.au
New Partnership - Compare & Connect HeartKids is very excited about a new corporate partnership which we are
developing with Compare & Connect. Homeowners, renters and even Real Estate Agents save money by engaging Compare & Connect to complete a comparison with multiple retailers in the market. For every new connection made, just by simply telling Compare & Connect you are from HeartKids, they will make a $40 donation to HeartKids on your behalf. Since many homes have up to four or five connections HeartKids could earn up to $200 (or even more) whilst you save dollars on your Utility bills. It is the very definition of Win…Win...Win Whether it is gas, electricity, telecommunications, internet, pay TV
or even insurance all you need do is call Compare & Connect and they can work out which Utility Service providers on the market suit you and how you can save money….but that is not the best part. Their service even extends to the workplace. So if your business wants to save and see a donation go to HeartKids, all you need do is contact Compare & Connect and say HeartKids sent you. We are very grateful to Chris Bartels and his team for putting this opportunity to HeartKids, our members and supporters. So let’s all start to save and give together. Call Compare & Connect on 1300 859 258 or go on their website: www.compareandconnect.com.au
Moving home? Get connected!
will donate $40 to HeartKids for each connection!
You Save & They Give!
For a comparison please call: 1300 859 258
Branch News HeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine. Follow us on Facebook or watch the Events Calendar on our website for upcoming Catch-up dates: http://heartkidsvictas.org.au/events/
Geelong Father's Day The Geelong Branch families celebrated Father's Day together. They all had good fun with the kids doing some Father's Day Craft and then enjoying the Kids vs Dads soccer match at the play centre. The dads were determined to win even though it was a challenge trying to keep up with the kids. Very entertaining for those watching!
Bundoora Branch held a Dinner for Parents in August
Geelong Branch Disco
On 30 September HeartKids Geelong held another very successful Disco
Thank you to all those who donated their time to help out at the Geelong Disco: • Mitch Pilgrim (DJ Mitch) for the entertainment • Marlene Holahan for the photography • Cassie Silva and Jeanette De Boer for Face Painting • Victoria Miller for the crazy hair • Brittany Gibson for manning the lucky dips • Audrey Godfrey and Tom Godfrey for helping set up and pack up • Kerri Loney from Hepburn Waters and Beverages for donating the drinks for the event • Wayne Gibson for doing a bit of everything as usual. • Lastly thank you to everyone that came and made the day so much fun and such a success. Libby Gibson Geelong Branch Coordinator
Tasmania News Burnie Catchup Regular catchups are being held on the northwest coast - all are welcome to join in. Here's a photo which was taken when the families recently met at Devonport minigolf. Any feedback or input for future events is welcome.
Presentation at Hobart
Hobart Branch Coordinator Kaye Nugent is presenting Stewart Pither with a Certificate of Appreciation, acknowledging his amazing effort in the Run Melbourne community fun run in Melbourne on 24 July.
NMFC v SWANS Football Match A massive thank you to North Melbourne Football Club for donating 100 general admission tickets for our families to attend the North Melbourne v Sydney Swans game at Blundstone Arena on 20 August. It was a great game as the Swans led for most of the day, but were forced to hold off a spirited North fightback to seal the 12.13 (85) to 10.16 (76) victory. Our families thoroughly enjoyed the experience.
Support Matters Welcome to the Spring Edition of our magazine. We are happy to see the back of winter – it seemed to last forever and was colder and wetter than usual. It’s great to be on daylight saving time so we can enjoy longer days and hopefully more sunshine! Tracy and Rebecca enjoyed travelling to Auckland, New Zealand for Fontan Education Day in September. It’s always amazing to hear the latest research and have the opportunity to network with clinicians, researchers, young people and families. Please read the article on page 9. Tracy along with Lisa Selbie and Donna Hammond from HeartKids Australia took the opportunity while in New Zealand to catch up with the team at HeartKids New Zealand. They had great discussions, shared lots of information and agreed to work more collaboratively in the future. Our team is busy planning our Tween Camp, Youth Social Events, Christmas party, Teen Camp and other summer events. We are pleased to be providing more opportunities for adolescents and young people to catch up - we have more socials planned before the end of the year. For the latest information on upcoming activities and events please check the Events Calendar on our website www.heartkidsvictas.org.au
Jersey Day Friday 2 September was Jersey Day, a simple concept designed to raise awareness of The Organ and Tissue Authority and the Donate Life network. The awareness day asks schools and workplaces to allow students and employees to wear their favourite sporting jersey to school or work to show their support for the Donate Life network and begin the conversation with their friends and families about Organ Donation. Heart child Adam participated in Jersey Day while he was on Koala ward at The Royal Children's Hospital.
We are constantly inspired by the courage, strength and tenacity of our heart children and their families. Your stories have a big impact and we would encourage you to share your stories and photos to help us raise awareness about Childhood Heart Disease to the wider community. Please send them to email@example.com. A reminder that Privacy Laws prevent us from viewing the patient lists in hospitals. If you would like one of our team to visit you, please advise the ward clerk/nurse/send us a message either via email: firstname.lastname@example.org or text message 0478 091 773 Enjoy the spring sunshine! Best wishes Tracy, Sherrie, Rebecca & Helen
MonashHeart's dedicated paediatric cardiology team provide a crucial cardiological service to some of the most vulnerable patients in our community. L to R: Paediatric Fellows Dr Ibtihalat Mohamed and Dr Ala Mustafa, Consultants Dr Suraj Varma, A/Prof Sarah Hope (Head of Service) and Dr Bennett Sheridan.
Support at MonashHeart
r Our Family Support Coordinato on ic clin the ts visi ld ona Sherrie McD pm 4.00 pm 1.00 ys Wednesda Medicine Monash Children’s Clinic, Special se) Hou ch ullo McC Centre (next to 246 Clayton Road, Clayton
Hospital Happenings AFL Grand Final HeartKids decorated Koala ward to celebrate the AFL Grand Final. We also provided pizzas and grand final themed cupcakes for the families on the ward to enjoy some food and come together to watch the Grand Final.
Father's Day HeartKids organised gift bags for the fathers who had children on the Koala ward (cardiac) and Rosella ward (PICU) at The Royal Children's Hospital. Thank you to those who donated items for the bags, the volunteers who packed them, and the lovely nurses who delivered them. As you can see they were appreciated by the fathers and heart child Kaitlyn was very happy to celebrate her father's first Father's Day!
RCH Morning Teas
wishes A special hello and our very best e been in to all the heart children who hav hospital in the last three months.
All ward, ICU and outpatient fam ilies are welcome to join us for mornin g tea, held on Tuesdays and Thursdays from 10:30am - 12:00pm in the Par ent Lounge on the 3rd Floor. We look forward to seeing you the re!
Reflections In Loving Memory of Ivànovic Augusto Petruccelli 11-9-2015 ~ 5-8-2016
With a heavy heart Ivànovic lost his fight to congenital heart disease on 5 August, just minutes after sunrise. Our beautiful boy closed his eyes forever. He was and is the most beautiful, happiest little boy we have ever had pleasure of loving. His big smile would light our hearts up with warmth and joy. His little Alfalfa hair, big beautiful eyes forever in our memory. The moment he came into this world he was special. Ivànovic was like no other.
You taught us how to love and live with the Unknown, To appreciate every moment, To embrace every glimpse of sunshine that touches my face. When the sun comes out we'll know it's you, When the stars are shining we'll think of you and when the moon lights up the streets at night we'll close our eyes and imagine we are with you. We miss you Ivànovic forever and always. We're not sure how to get thru life without you but we endeavour to keep our promises to you my love.
Our dearest Ivànovic Thank you for choosing us to be your mama and papa, You taught us so much in a small amount of time. There are no words to describe the love we have for you. We loved spending every day with you, you are our best friend. We loved our sleepovers.
There will never be any words to describe the loss we feel without you here. Missing you tirelessly Forever young and happy Love your Papa and Mama xx Laura Petruccelli and Phillip Romano
In Loving Memory of Vimukthi Pannila Vithanage 18-10-2015 ~ 4-10-2016 My sweet little Vim, I’m wondering where you are? Why did you leave me so soon, I wanted more love from you I want to hold you, cuddle you and give you lots of kisses The pain is unbearable and it’s piercing my heart I feel so empty and miss you my love You will always be my son forever and ever and ever! Himale Liyanage ~
Kids and Palliative Care team. Thanks to everyone: RCH cardiology unit, HeartKids, Very Special He wouldn’t have made it this far without your amazing care. We are ever grateful for your support. May triple gem bless you all. ~ Love Vim's mother, father and sister, Himale, Tithira and Nijane
Reflections Heart Angel Remembrance
A poem for fathers It must be very difficult To be a man in grief, Since "men don't cry" and "men are strong" No tears can bring relief. It must be very difficult To stand up to the test, And field the calls and visitors So she can get some rest. They always ask if she's all right And what she's going through. But seldom take his hand and ask, "My friend, but how are you?" He hears her crying in the night And thinks his heart will break. He dries her tears and comforts her, But "stays strong" for her sake. It must be very difficult To start each day anew. And try to be so very braveHe lost his baby too. ~Eileen Knight Hagemeister
Thinking of You
Our thoughts and prayers are with the families and friends of all Heart Angels.
We remember these Heart Angels whose birth date or anniversary is in the Spring months.
Birth Dates Eliza Davis Cody Kent Avelynn Wood Meher Pahwa Estelle Slater Ivanovic Petruccelli Peter Elder Mayah Gambin Thomas Goodfellow Bryce Ibbs Rowan Seward Kiara Ward Jesse Cotter Vimukthi Pannila Vithanage Matthew Moran Oskar Dobell Simon Holmes Jacob Holden Alyssa Alsop Katherine Lin Owen Crew Georgia Morrison Mia Campbell Michael Meares Frank Desensi Parker Easton
3 September 2010 5 September 2003 10 September 1999 10 September 2011 11 September 2013 11 September 2015 13 September 2001 18 September 2013 24 September 1999 7 October 1989 7 October 1994 8 October 2005 12 October 1990 18 October 2015 20 October 2004 26 October 2013 28 October 1994 5 November 2001 7 November 2001 8 November 2013 15 November 2005 16 November 1998 16 November 2009 19 November 2007 20 November 2004 26 November 2013
Piper Laurie Asha McNamara Phoebe Rolando Eliza Davis Blake Gordon-Cooke Peter Elder Dylan Grilli Cody Kent Kiara Ward Jaime Ekberg Nikki Stavris Corey Lake Finn Adair Poppy MacKenzie Estelle Slater James Kelleher Oskar Dobell Kiera Ziegenhardt Adriana Acosta Matthew George Simon Holmes Alyssa Alsop Adem Urban Meher Pahwa Stephanie Williams Jack Farley Thomas Goodfellow Zach Beadel Katherine Lin
4 September 2014 10 September 2011 12 September 2012 13 September 2010 13 September 2013 14 September 2001 17 September 1994 18 September 2003 21 September 2011 3 October 2007 6 October 1995 11 October 2013 11 October 2006 18 October 2015 20 October 2013 22 October 2008 26 October 2013 29 October 2010 4 November 2015 5 November 2015 8 November 2012 11 November 2005 12 November 2013 14 November 2011 14 November 2013 23 November 2013 29 November 2010 29 November 2010 30 November 2013
Heartfelt Thanks... Biggin & Scott Awards Night HeartKids valued supporters, Biggin and Scott, held their annual Awards night on Thursday 11 August at the Lincoln of Toorak. The event was a sit down dinner and everybody that attended was dressed to the nines. Luisa Kenos, HeartKids Corporate Relations Coordinator, attended to represent the organisation and to ensure our gratitude to Biggin and Scott was well and truly communicated.
The evening was centred around the presentation of various Awards to members of the Biggin and Scott team. This was great fun and also a fantastic way of recognising the achievements of many of their retail offices as well as individual staff members. An outstanding total of $18,027 was presented to HeartKids at the event. This was made up of $12,080 that was donated from connections made through Compare and Connect and we would like to sincerely thank Chris Bartels and his team for working with Biggin and Scott to make this donation possible. A further $ 3,267 was raised from online auctions and $2680 from five live auctions. We would like to again thank Biggin and Scott most sincerely for their ongoing support of HeartKids and a special thank you to Michelle Page for organising such a successful night.
Sunshine Lantern Festival The 2016 Sunshine Lantern Festival was held on Sunday 11 September. The festival was full of amazing street performers, music, food of many nations, a colourful lantern parade, 20 minute fireworks and displays by many local businesses. Biggin & Scott Sunshine had a stall at the event and their focus was raising money for HeartKids through a donation for photo booth photos. We send a special big thank you to Dominica, Chiara and Laura who managed to raise over $300 at the event for HeartKids. The highlight of the day for the Biggin & Scott Sunshine team was meeting a HeartKids family -gorgeous 3 year old Addie (by the way it was her birthday) with mum Melanie, dad David and big sister Cece.
...for Your Support A Night With Lisa and Michael In September HeartKids was the beneficiary of a unique and outstanding intimate event at Milano’s of Brighton. This special performance of two of Australia's finest talents, Lisa Edwards and Michael Cristiano, came about 12 months earlier at our Gala when Lisa was so moved by the HeartKids story that she made a quick call to Michael to see if he would team up with her to auction a special one-off “gig” to the Gala audience. Our then Chairman Mr Phil Riggio, who openly is a massive Lisa Edwards fan, immediately put his hand up to bid. The result was a very personal performance for around 70 of mainly Phil’s friends and acquaintances.
Lisa has performed with some of Australia’s, and indeed the world’s, greatest musical artists including a long standing partnership with John Farnham, but also with Olivia NewtonJohn and Tom Jones. Michael is a renowned musician, producer and musical director, who has also worked with the industry's elite as well as directing The Seekers shows at London’s Wembley Stadium and Royal Albert Hall. HeartKids extends our sincerest appreciation to both Lisa and Michael for making such a kind gesture for us…and to Phil for making a night to remember.
Photos courtesy of Bray Photogr
Cuppa for HeartKids Our Cuppa for HeartKids fundraising campaign ran through the months of August and September with a few Cuppas still to be held in October. It has been another successful year with over $3,000 raised thus far. These fundraising events not only provide much needed funds for HeartKids but also raise awareness about Childhood Heart Disease. We are always overwhelmed with the time and effort that our community and corporate supporters put into hosting a Cuppa event. A very special thanks goes to everyone who participated this year to make it a very successful campaign. We would like to acknowledge Yolanda Care who raised over $1000, Melanie Brahaut over $700, Cameron Carter who is an 11-year-old heart child with HLHS who hosted his own Cuppa and raised $388, Meagan Arnold, Tracey Hardy, Simone Wright, Hannah Lenz, Jennifer Pike, Hannah Leigh, Alison Trevean and Lanthi Locke.
Our Members Participating... Mrs Australia Globe Events Mrs Australia Globe entrant Amanda Neophytou organised a number of fundraising events supporting HeartKids and Bully Zero Foundation. Amanda generously offered tickets to the Bridget Jones's Baby movie fundraiser. Our heart mums who attended had a fantastic time, thoroughly enjoying Amanda's hospitality, watching the movie and appreciated the opportunity for some much-needed respite.
Circus Quirkus Courtesy of the following organisations, we were offered tickets to the Circus Quirkus shows held around Victoria and Tasmania. • Rotary Club of Albury • IDFA • Rotary Club of Highton • Lions Club of Hobart Town • Rotary Club of Central Launceston • Rotary Club of Preston • Lions Club of Shepparton A number of our families took up the offer for free tickets and had a great time watching the show.
One lucky heart mum who is starting a new job loved the opportunity to participate in a group styling session run by Melina Bagnato from ‘Style me Over’ at her Style Me Over Boutique in Oakleigh. We'd like to thank Amanda for her fundraising efforts and her wonderful support.
...in Amazing Activities Candlebark Farm Family Camp Candlebark Farm was once again busy when we gathered for our family camp on the weekend of 16 - 18 September. We had mixed weather over the weekend a beautiful Spring day with glorious sunshine followed by misty rain the next day but that didnâ€™t deter families from enjoying all the activities on offer. The Art Cabriolet team had the families engrossed in art activities, the flying fox was in full swing with our children and parents flying down the mountain and canoeing was great fun. The local Emergency Services gave our children a great thrill by attending the camp and allowing them to view their vehicles and sound the horns. Our children had great fun under the guidance of child care coordinator, Natasha and her team so that our parents could enjoy a dinner out at the local RSL club. All were in good hands with our volunteer medic Chris in attendance. We thank Kiwanis for their support and sponsorship of this camp and sincerely thank the following volunteers and organisations who made the camp a success: Bruce, Brian, Shirley, Cameron, Natasha, Corrine, Matt, Simone, Paul, Shaye, Paige, Margaret, Lynette, Kathy, Nerissa, Chris, and all the Kiwanis volunteers. The Art Cabriolet team, SES, Police, CFA, Ambulance, Candlebark Farm Manager Mike and staff, Healesville RSL, Bendigo Bank.
Thank you for your recent gifts... Ample Café and Bar
St Bernards Football Club Ladies Lunch
Keilor Rotary Club
Latrobe Lions Club
Team Asha City 2 Sea Fun Run
Cuppa for Valentina & Isabella Care
North Melbourne Football Club
Z Transport Group
HeartKids Shepparton Branch
Pither, Stewart - Run Melbourne
Jack shaves his beard for HeartKids
Financial and in-kind contributions over $500 are acknowledged in this column.
Presentation to HeartKids Victoria Founding Members A special occasion was held on Tuesday 16 August when awards were presented to the Founding Members of HeartKids Victoria which was formed in May 1990. Most of the women on the first Management Committee had young children with heart conditions and one was an adult with CHD - all were volunteers who showed great passion and dedication. Founding Chairperson of HeartKids Victoria, Carol Bosward related the story of the beginnings of HeartKids in 1990. The presentations by HeartKids Victoria/Tasmania Chairperson Tania Tytherleigh acknowledged the valuable contribution of those who began the organisation which has become HeartKids as we know it today.
Margy Kyberd, who passed away in 2009, was one of the Founding Members
Tania Tytherleigh (left) with Margaret Patullo, Jan Kyberd representing her daughter heart angel Margy Kyberd, Julie Polson, , Carol Bosward, Margaret Jeffery, Debbie Peel, Margaret Agetzis rs Saunde Nicole Yvonne Ryan and
Thanks to Widi Baskoro Photography for the photos taken at
Sponsors and Supporters Victorian Partners:
ROTARY CLUB of TULLAMARINE
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MELBOURNE METRO BRANCHES Bundoora Jessica Shakespeare 0409 165 004 email@example.com East Bentleigh Maggie Stavrou (03) 9563 7133 firstname.lastname@example.org East Brunswick Marnie Ceballos 0433 342 716 email@example.com Eastern Suburbs Yolanda Care 0433 136 326 firstname.lastname@example.org Frankston/Peninsula Maxine Selzer 0421 561 958 email@example.com Melton Lauren Tyrrell 0424 594 757 firstname.lastname@example.org Pakenham Joanne Arrowsmith (03) 5967 7083 email@example.com Point Cook Jonathan Mackley 0411 114 008 firstname.lastname@example.org Tullamarine Paige Donnelly 0424 239 964 email@example.com REGIONAL BRANCHES VICTORIA Albury/Wodonga Cathie Kelly 0417 049 341 firstname.lastname@example.org Ballarat Rohini Dobell & Alan Smith 0407 851 648 email@example.com
HeartKids Vic Inc CONTACT US PO Box 803 Parkville Victoria 3052 P: (03) 9329 0446 E: firstname.lastname@example.org
VISIT US Suite 33 204 – 218 Dryburgh Street North Melbourne 3051
Facebook: HeartKids Victoria/Tasmania Twitter: @HeartKidsVicTas Instagram: heartkidsvictas
ARN: A0021470B ABN: 16 336 986 918
Contact Details Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 email@example.com Clare Fountain 0418 140 347 firstname.lastname@example.org Nadine Daly 0413 710 342 email@example.com Cobram Bianca Quinane 0419 674 408 firstname.lastname@example.org Echuca/Moama Tracey Hard 0438 962 056 email@example.com Geelong Libby Gibson (03) 5250 2439 0411 057 905 firstname.lastname@example.org Horsham Gaynor Baker 0407 504 538 email@example.com Kyneton/Woodend Amy Crosbie 0411 552 264 firstname.lastname@example.org Mildura Caitlin Andrews 0412 447 269 email@example.com Portland Kerry Sluggett (03) 5523 2503 0418 312 320 firstname.lastname@example.org Shepparton Cheryl Alexander (03) 5825 4005 email@example.com Stawell Leanne Amarant 0419 864 412 firstname.lastname@example.org Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 email@example.com
Wonthaggi Erin Howell 0431 702 863 firstname.lastname@example.org TASMANIA Burnie/Devonport Claire Gluyas 0408 351 661 email@example.com Hobart Kaye Nugent 0410 410 440 firstname.lastname@example.org Paul Hyland (03) 6247 8435 0418 561 504 email@example.com Launceston Kylie Smith (03) 6393 6240 0448 983 587 firstname.lastname@example.org Steven Wright 0407 908 674 email@example.com SPECIAL INTEREST GROUPS 22q11 The VCFS and 22q11 Foundation Maria Kamper www.vcfs22q.org.au BEREAVED FAMILIES SUPPORT CHD Child Loss AUSTRALIA Facebook group BRUGADA SYNDROME Pavlina McMaster 0438 233 414 firstname.lastname@example.org CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/ DOWN SYNDROME Sam Jackson 0439 360 035 email@example.com EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 firstname.lastname@example.org
hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 email@example.com hearts4heart.net.au HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 Leanneamarant@hotmail.com Csaba Ovari (Tasmania) (03) 6229 8169 firstname.lastname@example.org KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 email@example.com Website: www.sakks.org KAWASAKI DISEASE Shirley Mates (03) 9894 1257 firstname.lastname@example.org Website: www.kdfoundation.org.au LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 email@example.com www.sads.org.au or www.sads.org.uk/ MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 firstname.lastname@example.org MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 email@example.com OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984