Matty’s Soldiers have waged a war on HHT and won’t retreat until a cure has been found.
The Violante family founded Matty’s Soldiers after losing 26 year old son and brother, Matthew, to Hereditary Hemorrhagic Telangiectasia (HHT) in 2011, and discovering 20 year old sister and daughter, Alicia, is currently living with HHT. HHT is a genetic disorder characterised by abnormal connections between arteries and veins, which can lead to rupturing and bleeding into tissues and major organs. Matthew was looking to join the Australian Army when he suddenly passed away from the disorder. Matty’s Soldiers’ goal is to raise the much needed funds and awareness for HHT research to lessen the suffering of those with HHT and hopefully find a cure in the future.
Matthew’s sister, Sara Taji says “I am continually overwhelmed by the support we receive from our family, friends, community and other HHT sufferers.”
“Not having Matt here is so hard but having Matty’s Soldiers, and to have such a huge outcome from one of our events makes it a little bit easier. We will continue to fight this battle for all HHT sufferers and to honour my brother,” Sara said.
Professor Ingrid Winship from The Royal Melbourne Hospital said the funds raised would do a great deal for research and support for HHT patients and families.
“The money is used to employ a part time genetic counsellor to maintain the HHT Registry and generate a larger set of resources for HHT patients and their families.”
“Funds are also used to complete the development of an optimal genetic testing panel, for finding the specific genetic cause of HHT in each family. At the moment, the high cost of testing is a barrier,” Professor Winship said.