Students from Canobolas Rural Technology High School will take turns pedalling during a 24-hour challenge on Thursday and Friday to raise money for research into Prader-Willi Syndrome (PWS).
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The students wanted to take part in the ride after Orange baby, Mabel Johnson, was diagnosed with the rare, life-long, non-genetic disorder, which has no cure.
Symptoms include insatiable hunger, obesity and small stature, as well as intellectual disability, varying throughout a person’s lifetime and differing in severity from person to person.
Led by students from the Canobolas High Performance Athletes (CHPA) program the Ride for Team Mabel and Prader Willi Syndrome will take place on stationary spin bikes from 1pm on Thursday to 1pm on Friday in the school’s gym.
Participants will be sponsored and there will also be fundraising competitions as well as food provided.
Year 7 student Skye Dent has already raised $347 after she took around a collection bucket at the Monkerai B&S Ball on the weekend.
“I really felt bad for the little girl,” Skye said.
It is the latest in a string of fundraising events inspired by Mabel and CHPA director Mark Skein said the school wanted to become involved because her father, Justin Johnson has supported the CHPA students through his company Phyz X Physiotherapy.
“PhysX are massive supporters of the high performance athletes group,” Mr Skein said.
Mr Johnson said the initial fundraising was started by a friend who wanted to help after learning of Mabel’s diagnosis.
The initial fundraiser was the City2Surf and a $15,000 goal was set to ‘fix the hunger in PWS’.
Mr Johnson said the Prader-Willi Research Foundation of Australia confirmed there were studies in the area of epigenetics (working on the root cause of PWS) that could explore a study into waking up the inactive genes in PWS, and $15,000 would be enough to initiate one of these studies.
”This was perfect in my mind as it may start the process of finding a technology that could directly influence the genes that are affected by PWS and may progress towards therapy that could be applied to people with PWS in the future,” he said.
There was so much support, Team Mabel raised $27,000 by the end of the City2Surf and is now pushing past $31,000.
Tanya Marschke
I am based at Orange and cover a wide range of subjects as well as the weekly business column. I've worked consistently in the the media industry since 2006 including the past seven years at the Central Western Daily. Before moving to Orange, I worked as a journalist at weekly newspapers the Beaudesert Times and the Gold Coast Sun in Queensland, as well as the Scone Advocate in the Hunter Valley. I started my career at the Ridge News in Lightning Ridge while I completed my journalism studies remotely at Charles Sturt University in Bathurst.
I am based at Orange and cover a wide range of subjects as well as the weekly business column. I've worked consistently in the the media industry since 2006 including the past seven years at the Central Western Daily. Before moving to Orange, I worked as a journalist at weekly newspapers the Beaudesert Times and the Gold Coast Sun in Queensland, as well as the Scone Advocate in the Hunter Valley. I started my career at the Ridge News in Lightning Ridge while I completed my journalism studies remotely at Charles Sturt University in Bathurst.
