Matty’s Soldiers: Operation Black Tie

Alicia Violante is fighting back against the genetic disorder she was born with and dedicating her life to raising awareness for HHT in her brother’s memory.

Alicia Kate Violante

Alicia Violante is fighting back against the genetic disorder she was born with and dedicating her life to raising awareness for Hereditary Hemorrhagic Telangiectasia in her brother’s memory.

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 20 year old, who was only 14 when she discovered she had the condition said she didn’t really understand the severity until her brother Matthew died suddenly in 2011 from HHT related complications.

“When I was younger I couldn’t do netball training or be outside in the heat too long but never knew why so when I found out I had HHT, it made more sense. My grandmother died from it, my mum has it and it took my brother too,” she said.

The bright, young UniSA student studying psychological science is working towards transferring into Laboratory Medicine to dedicate her life to research and finding a cure for HHT.

“I want to help find a cure, get into the field and research more about genetics and what patients need. It wasn’t until Matty passed away that I realised I wanted to be in the medical field and make a difference; living with HHT motivated that,” she said.

Following Matthew’s passing, his older sister, Sara Taji (nee Violante), Alicia and their family established “Matty’s Soldiers” in his honour to raise funds and awareness for HHT research.

Since forming the group, they have raised more than $60,000 and Sara has been named Holdfast Bay’s Young Citizen of the Year this year in honour of her contribution to the cause.

“Matty wanted to join the army but because they didn’t know what HHT was, they couldn’t take him so we formed the army Matty’s Soldiers to raise awareness and money in his memory; and so he can finally be in an army,” Sara said.

Matty’s Soldiers are the only HHT fundraising group in Australia and all the money raised goes to the Australian HHT Centre at Royal Melbourne Hospital.

For the Violantes who all work together at their family owned shop in Newton Seafood Works, supporting each other and working for the cause keeps them motivated.

June is HHT awareness month so the Violante family have organised a black tie event for May 3rd at The Grand Ballroom and all are welcome.

The red carpet event, complete with entertainment by local Adelaide bands Upper East Side and Fifth Avenue, promises to be a celebration of friendship, family and fashion.

The Violantes have called in the talents of loved ones and they have delivered by providing a fashion show from the collections of local boutique Azalia, and the MC for the evening is none other than local Adelaide comedian Sophy Nassar.

With the door prize a $3000 diamond pendant necklace from Everett Brookes jeweller, there are many reasons to support this brave family and their cause, and enjoy an elegant night out!

Tickets can be purchased by contacting Sara Taji at [email protected]

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