June is HHT awareness month and to mark the occasion, Adelaide group Matty’s Soldiers raised over thirty thousand dollars for the Royal Melbourne Hospital.
Hereditary Hemorrhagic Telangiectasia (HHT) is a hereditary disorder, which affects major organs, causing the blood vessels in them to build up pressure and potentially burst.
The Violante family founded Matty’s Soldiers after losing 26 year old son and brother, Matthew, to the disorder and discovering 20 year old sister and daughter, Alicia, is currently living with HHT.
Last month, Matty’s Soldiers held their Black Tie Event to raise awareness and funds for the HHT clinic at Royal Melbourne Hospital.
Hosted at The Grand Ballroom in Fulham Gardens, family and friends of the Violantes, as well as local businesses and supporters gathered to join the fun and offer support.
Raising exactly $33801.50 through ticket sales, donations, auctions, games, a fashion parade and raffles, coordinator of the event, Sara Taji (nee Violante) was thrilled with the success of the evening.
“I am so pleased and overwhelmed by the generosity of our guests. I am continually shocked 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,” Taji said.
Staff from the Royal Melbourne Hospital flew over for the event to give a keynote address and meet with guests.
Professor Ingrid Winship from the hospital said the funds raised would do a great deal for research and support for HHT patients and families.
“The money will be 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 will also be 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.
With generous support from a host of local businesses (including a $3000 diamond necklace door prize donated by Everett Brookes Jeweller).
Matty’s Soldiers have waged a war on HHT and won’t retreat until a cure has been found.
Story by Libby Parker
Photo by Michelle Forte