Steps for cure to rare disease

August 5, 2022 BY

Ready to walk: Teghan Henderson and Skye, Wanna, and Mark Robson are all doing their part to raise funds for Sanfilippo Syndrome research. Photo: TIM BOTTAMS

WITH August underway, Mark Robson is aiming to take fifteen-thousand steps a day to raise funds for a cause that is close to his heart.

This month will see his second participation in the Steps for Skye program, a walking fundraiser that seeks to raise money and awareness for Sanfilippo Syndrome.

His daughter Skye was diagnosed with the disease eight years ago and the campaign was founded in 2019 by her carers Teghan Henderson and Bree Pellow.

“She was four years old when she was diagnosed,” Mr Robson said. “We always promised her love, happiness and quality of life, and that we’d never give up looking for a cure.

“It’s estimated only a few thousand have it. There’s no cure and because the numbers are so small there’s not a lot of research being put forward by pharmaceuticals.

“The proceeds will be sent to the Sanfilippo Children’s Foundation, and it’s donations like these that are the driving force behind research into the disease.”

Mr Robson said the campaign has grown each year, with roughly $12,500 raised in the first year and more than $25,000 12 months later.

Over 70 people have registered to participate in the walk, with the goal of $50,000 for this year’s attempt.

Mr Robson and Skye will walk around Lake Wendouree on an upcoming weekend to meet the program’s supporters, and Ms Henderson said the community’s response has been “amazing.”

“I think our first goal was $1000 and when it just kept going, we were like what? We couldn’t believe how far it’s come,” she said.

“This year there’s so many people we don’t know who’ve signed up as well. They’ve just been sharing it around and getting involved however they can.”

To register for or sponsor the campaign, visit bit.ly/3Jg4bCW.