High Tea Event to Raise Funds for Rare Voices Australia and Australians Living with a Rare Disease
Hugo Evans and Owen Barkla, year 12 students studying the International Baccalaureate, are raising funds through a Rare Disease Day high tea event for Rare Voices Australia (RVA) and the estimated two million Australians living with a rare disease. The event had three components:
- The high tea that sold out and was held on Sunday, 3 March 2024
- A silent auction, where people could bid on eight items, including beach house accommodation, pamper packs and other items donated by local and family businesses
- A raffle where people had the opportunity to win prizes donated by family and friends. Raffle tickets were sold on the day by Hugo’s cousins – Oscar, 7 and Felix, 5
The High Tea
The sold out high tea was held on Sunday, 3 March 2024 and attended by 40 people. Guests enjoyed drinks and finger food, including traditional scones and many sweet treats. Hugo and Owen organised the event alongside their friends from school and family friends who work in the food industry.
Hugo shares his motivations for organising the event:
“I wanted to do this fundraiser mainly because of my mum who developed Relapsing Polychondritis (RP) in 2018. I’ve seen her go through things like being unable to find a diagnosis and having to fly to London to get an expert to give her the diagnosis to then facing difficulties with side effects from treatment that made her essentially bedbound and almost as sick as she would be without any treatment. My mum had to give up her career as a law academic at Flinders University which made her really sad.
“All this culminated late last year when doctors told my mum that a scan showed 75% of her trachea had collapsed, as RP affects the cartilage, risking long-term respiratory issues and even death. Fortunately, it is not as bad as the scan showed, but understandably it mentally exhausted her. I wanted to do something positive with her to start off this year. I think the most admirable thing about my mum is the fact that even through all of this, she is still able to keep moving forward. She is still able to take care of me, my sister, and my dad, and is the most supportive and best parent that I could have asked for.
“In total, we aim to raise around $5,000 for Rare Voices Australia.”
Funds Raised Will Support the Estimated Two Million Australians Living with a Rare Disease
Effective rare disease policy transforms lives. Funds raised through this event will help RVA continue overseeing the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Disease (the Action Plan), and contribute to achieving the best possible health and wellbeing outcomes for Australians living with a rare disease. The Action Plan is the first nationally coordinated effort to address rare disease in Australia.