Frontline Team take on Wicklow Way in 24 Hours
Around 135 young people every year die due to sudden cardiac deaths from inherited heart conditions and funding for vital research in this area will run out by September unless €30,000 is raised.
In order to continue funding this lifesaving research in the Regenerative Medicine Institute (REMEDI), Dr. Terence Prendiville, a paediatric cardiologist with CHI at Crumlin, and a number of other healthcare professionals associated with the Irish Inherited Cardiac Conditions Network, are walking the 135km Wicklow Way over the course of 24 hours. 1km for each sudden cardiac death in a young person in Ireland a year.
One of the common causes of sudden cardiac death in young people is Long QT syndrome. Research is ongoing to identify what medicines might be the safest for those who have Long QT Syndrome and also to develop a cure for Long QT syndrome by correcting the spelling mistake in DNA that causes the disease. This gene editing is cutting edge medical therapy; it potentially offers a chance of cure to a severely affected young person by re-writing their genetic code.
Dr. Terence Prendiville is part of a wide network which supports the research efforts of the Regenerative Medicine Institute (REMEDI) as they work with families who have Long QT syndrome, whose funding will run out by September unless €30,000 is raised.
Darius Vasseghi died from Sudden Cardiac Arrest when his heart stopped suddenly and without warning when he was 18. He appeared to be a fit and healthy young man. To his mother Mary Desmond Vasseghi “it was a complete shock to me and everyone around Darius. He was Irish Fencing Champion, everybody thought he was so healthy. It turned out he had an undiagnosed inherited heart condition from which he died.” Long QT syndrome caused Darius’ heart to stop but the gene has not yet been identified and in order to ensure other family members’ safety, further research is needed.
Long QT syndrome is caused by an irregular heart rhythm but is very treatable with medicines once identified in the vast majority of people. The research, which is the focus of Dr. Prendiville’s fundraising walk, involves taking samples of the patient's skin cells and turning them into heart cells in a dish so that their particular disease can be studied.
Lucinda McNerney’s family is one of those taking part in the Long QT Syndrome research – there are four generations of her family with Long QT gene. “I videoed my children as their sample was taken. They were amazed at what would happen to their sample and what this would mean for present and future members of not only our family but for so many others.”
In approximately 10% of families who suffer the sudden death of a young person, an inherited cardiac condition is identified in a close relative (siblings, children or parents) and then ongoing care is provided to keep them safe and well.
These devastated families utilise the public and charitable screening services in CHI at Crumlin, the Family Heart Screening Programme (Mater Misericordiae University Hospital) and at Cardiac Risk in Younger Persons a.k.a. CRY (Tallaght University Hospital).
For Dr. Terence Prendiville, “collaboration and sharing knowledge is vital to the research efforts. The fundraising walk brings together the healthcare professional teams at the affiliated hospital sites for our National Centre for Inherited Heart Disease. They have each provided a number of fund-raising volunteers - cardiologists, scientists, GP's, nurses - to 'carry the torch' and participate in a continual relay along the Wicklow Way from start to finish. This research is incredibly important for providing a world-class service for families affected by a sudden, premature and unexpected death in a loved one. We hope you can support our walk and help raise the funds to keep this vital research going.”
Joining Dr. Prendiville on the relay walk are:
- Dr. Joe Galvin, Dr. Catherine McGorrian, and Clinical Nurse Specialist Mags Gallagher who run the ICC screening service at Heart House, Family Heart Screening Clinic, Mater Misericordiae University Hospital
- Dr. Deirdre Ward and Dr. Derek Crinion, who run the ICC screening service at CRY, Tallaght University Hospital
- Dr Brian Blake, a GP who cares for families who have suffered a SADS death
Please donate HERE as the frontline team take on Wicklow Way in 24 Hours.