IHMRI researchers with the Saxby and Burns families at the Everyday Superheroes High Tea for Saving Chloe Saxby. Photo supplied.

Community spirit provides hope for children with vanishing white matter disease

The Everyday Superheroes High Tea for the Saving Chloe Saxby campaign on Sunday 19 August was a balloon-filled extravaganza of fun, laughter and support.

Thanks to the generosity of attendees, the day raised over $60,000.

The funds raised will go towards Dr Lezanne Ooi‘s research project on Vanishing White Matter (VWM) disease, a rare genetic disorder that affects the nervous system, causing problems with movement and mental functioning.

For Dr Lezanne Ooi and her research team, the event provided a well-earned break from the laboratory, as well as the opportunity to get to know the people they are helping. 

The research team has been hard at work on the first stage of a project to find potential treatments for Chloe Saxby and Holly Burns, two young girls who suffer from VWM. 

Held in University Hall at the University of Wollongong, the audience was entertained throughout the day with raffles, speeches and live music by Martini Shakers and Chloe Christine Music. Over 500 people attended the event, which was hosted by news journalist and presenter, Natassia Apolloni.

Dr Ooi addressed the audience to provide an update on the research.

Research into rare diseases like VWM is often not supported by Government funding, so the Saxby and Burns families have relied on grass roots fundraising. Fortunately, the community-minded spirit of the Illawarra-Shoalhaven has come to the rescue.

Special thanks

IHMRI extends our warmest thanks to the Saxby and Burns families and to all the people and businesses who supported the event, especially the organisers of the High Tea:

  • Kelly and Sarah Aquilina
  • Amanda Garretty
  • Kim Draper
  • Taniele Stojczan
  • Sarah Shaw
  • Sarah Marshall

Related stories

IHMRI continues research into VWM disease for Chloe Saxby

Support grows for rare genetic disease research

IHMRI researchers provide new hope for Chloe Saxby

Top picture: Back row: Grant Saxby, Professor David J. Adams, Dr Lezanne Ooi, Kara Lamond, Rachelle Balez, Dr Martin Engel, Dr Mauricio Castro, Dr Neville Ng. Front row: Nyree Saxby, Chloe Saxby, Holly Burns and Amanda Burns. Photo supplied.

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