February is HeartKids Awareness Month & Valentine’s Day (14 Feb) is HeartKids Awareness Day! HeartKids is trying to raise awareness and funds in Australia about Childhood Heart Disease (CHD), which is one of the biggest killers of children under the age of one.

HeartKids is an amazing Australian organisation that focuses on all aspects of children’s heart disease. HeartKids offers support to children and their families who are suffering with CHD and they also fund research projects into Childhood Heart Disease.

Our Molecular Cardiology Research Program recently received a generous $29,000 grant from HeartKids to support our research into the potentially deadly role of genetic heart diseases in sudden death in children, including Sudden Infant Death Syndrome (SIDS).

The much-needed funding will support the efforts of a passionate young Centenary Institute scientist Annie Evans. Annie is investigating key genes that may be responsible for electrical disturbances in the hearts of babies and young children. We hope this work will help prevent these heart-breaking deaths in the future.

There are a number of great ways to get involved in HeartKids Awareness Month & Day, check out their new website at www.heartkids.org.au to find out how you can get involved in events like:

• Capture a Heart on Facebook – upload a heart image that you’ve spied and photographed
• Wall of Hearts – write a message of love and support at any Retail Food Group outlet such as Donut King, Brumby’s and Michele’s Patisserie
• Golden Heart Campaign – on Valentine’s Day swap the roses and chocolates for a heart-warming donation to HeartKids

Prof Chris Semsarian

Question: As part of the dietary limitations on a person suffering from a SAD’s, what is the recommended limit of stimulants such as caffeine? Kathy C

Answer from Professor Chris Semsarian:

High levels of caffeine can have negative effects on the heart as it can alter the heart’s rhythm and raise blood pressure.

In the past year, several of my patients have been hospitalised with heart rhythm problems after consuming energy drinks high in caffeine and other additives. Cardiologists in various parts of the world have also reported similar events.

High levels of caffeine, especially when combined with other ingredients like guarana or taurine, can make the heart go faster, leading to very dangerous rhythms that can ultimately cause sudden death.

For someone with an underlying heart condition, this combination of ingredients could have a potentially lethal effect.

It’s also dangerous when a young person or adult doesn’t know they have an underlying heart problem. Drinking the energy drink could unmask the problem with deadly consequences.

People have asked me about whether it’s the same deal with coffee. It doesn’t seem to be the case. I believe this is because, compared to energy drinks, standard coffee is drunk more slowly, it’s lower in caffeine and doesn’t contain potentially harmful additives like taurine.

My verdict

For people with heart problems, especially someone with a heart rhythm disease (e.g. Long QT Syndrome/LQTS, CPVT, Brugada), I suggest avoiding high-caffeine energy drinks altogether and limiting standard coffees to no more than 1-2 per day.

I also suggest the same precautionary measures for anyone who has had a family member – whether it’s a parent, aunt/uncle, cousin, grandparent or great grandparent – who has died suddenly for no apparent reason.

In the news

You can also read a news story and watch an interview at ninemsn.

Got a question?

If you have a query or an issue related to genetic heart disease, please email us, post it on our Facebook page or tweet @CSHeartResearch to get an answer.

The latest enrolment on the National Genetic Heart Disease Registry has taken us to the 1000 mark!

This huge achievement is thanks to the collaborative efforts of key centres across Australia and the involvement of Australian families affected by genetic heart disease who are keen to help make a difference.

The valuable data we have collected from the 1000 people on the Registry is helping us identify better ways to diagnose and treat people with genetic heart disease. Ultimately, we hope this will improve and save lives both now and in future generations.

Reaching 1000 is a great start but we still have a long way before we enrol every Australian family with genetic heart disease (our lofty goal for the Registry!).

This goal may seem overly ambitious to some. But I’m inspired by the amazing positive support we’ve had from people with genetic heart disease, their families and their health professionals. If we continue to receive this great level of support, I’m confident we can get there.

If you have genetic heart disease and would like to join the Registry, please email me at registry@centenary.org.au for the secure online link.

Jodie Ingles

Following the tragic death of a much-loved husband and father of two young children, Anton, friends rallied together to form the Keep Young Hearts Beating committee to help make a difference. Anton died unexpectedly from a genetic heart condition known as Long QT syndrome at just 33 and the members of the Committee were keen to help other families avoid a similar loss.

To help raise critical funds for research into Long QT Syndrome and other genetic heart diseases, the Keep Young Hearts Beating committee held their first fundraising ball on Saturday 8 October in the Grand Ballroom at Taronga Zoo.

Guests at this amazing event dressed in black tie with a touch of Zebra in honour of Anton’s South African upbringing. Keep Young Hearts Beating committee member Katie Patterson said she was overwhelmed and touched by the generous response they had from the event supporters and guests.

The Young Hearts Fundraising Ball has raised much-needed funds for the Agnes Ginges Centre for Molecular Cardiology (The Centenary Institute, University of Sydney) to support research into genetic heart diseases in people under 35 including the National Genetic Heart Disease Registry.

Professor Chris Semsarian, Head of the Agnes Ginges Centre for Molecular Cardiology, said: “I am truly honoured to be the chosen charity for this wonderful event set up by an amazing group of people in memory of their friend.

“The vital funds raised from this ball will help us improve our understanding of genetic heart disease, especially in young people like Anton. We hope to use this understanding to develop new ways to treat these conditions and prevent sudden cardiac death.”

To donate online visit http://www.keepyoungheartsbeating.com

On behalf of all the Registry research team, we wish everyone a very Merry Christmas and Happy New Year!! We hope you have a great break and look forward to an exciting 2012.

2011 has been an amazing year for the National Genetic Heart Disease Registry (NGHDR). We launched our new website, sent our first update and hundreds of people have started connecting with us via Facebook and Twitter.

But what’s even more important is the increasing number of people supporting the Registry. We thank all those people who have joined the Registry – your participation will help us improve our understanding, diagnosis and treatment of genetic heart disease in Australia.

In 2012, we hope to see more people with genetic heart disease and their families join the Registry to help us improve and save lives. We’d also love to hear from you so please email us at registry@centenary.org.au if you have any ideas or suggestions or queries you’d like us to answer in our new Q&A section on our website.

Wishing you all the very best for a safe, happy and healthy festive season!

Professor Chris Semsarian & Dr Jodie Ingles

COMMUNITY GROUP BEHIND NEW GENETIC RESEARCH INTO SIDS

The Splash of Red Foundation has given genetic research into SIDS a huge boost by awarding a research scholarship of $25,000 to young Centenary Institute scientist Annie Evans. The scholarship, the second awarded to the Molecular Cardiology Research Program, is funded solely through the amazing fundraising events of the Splash of Red Foundation.

As part of Professor Chris Semsarian’s cardiac research team at the Centenary Institute, Annie will study the potential role of genetic factors in SIDS. Annie will examine key genes that may be responsible for potentially deadly electrical disturbances in the hearts of babies to hopefully prevent this heart-breaking disease.

Professor Semsarian said: “While major advances have been made in understanding SIDS, many questions remain unanswered. Identifying gene faults which may lead to SIDS will be an important advance in trying to identifying babies at risk of SIDS.”
The Splash of Red Foundation is a not-for-profit, charitable organisation dedicated to raising awareness and funds for Sudden Infant Death Syndrome (SIDS) and Sudden Unexpected Death in Childhood (SUDC). Their next event is a Sparkling Afternoon High Tea on Sunday 20 November 2011 at The Prime Minister’s Official Residence Kirribilli House.

Find Out More

With more than 1000 people now enrolled on the National Genetic Heart Disease Registry, I’m excited about the progress that has been made over the past four years to establish the first registry of its type in the world.

When I first set this up as part of my PhD in 2007 I didn’t think we would come this far in such a short time. But people have really embraced the Registry as a way to make a difference. Many new participants tell me they’re happy to join if it means it could help other families.

As the world’s first registry for people with genetic heart disease we’re certainly at the forefront in improving our understanding of genetic heart disease.

At the recent national conference for the Cardiac Society of Australia and New Zealand, I presented research on the cost-effectiveness of genetic testing for hypertrophic cardiomyopathy and I was honoured to receive the prestigious CSANZ 2011 Allied Health and Technologists Affiliate Prize at this major meeting for Australian cardiologists. Access to genetic testing is something that impacts a number of our families enrolled in the Registry and we hope our research will aim to change this.

While awards are a great acknowledgement it’s not the reason we established the Registry.

By enrolling every Australian with a genetic heart disease and their close family members in the Registry, we aim to provide a clear picture of how these conditions are diagnosed and treated in Australia. As someone who has worked with families experiencing the diagnosis of genetic heart disease (sadly, sometimes after losing a young family member), I believe the Registry can help lead to new ideas and better ways to prevent, diagnose and treat genetic heart disease.

1000+ people on the Registry is a fantastic achievement but we still have a long way to go. In the past year we’ve noticed a real jump in the number of people who want to be involved and we hope this continues.

I encourage all families with a genetic heart disease to enrol in our Registry. It doesn’t take long and no needles or lengthy surveys are involved (unless you agree to any future research projects ). Email or call me on 02 9565 6185 if you’d like to register online or have an enrolment pack mailed to you (or even if you’d just like to chat more before you decide to join).

Dr Jodie Ingles