Teen launches rare disease support group
Moriah College student Gidon Goodman, 15, and his mum Karen, officially launched the Gaucher Association of Australia and New Zealand as part of International Gaucher Awareness Month.
A JEWISH Sydney teenager born with rare genetic blood disorder Gaucher Disease has established the first patient support and advocacy group for Gaucher patients in Australasia, offering a platform to connect, share experiences and access support services and information.
Moriah College student Gidon Goodman, 15, and his mum Karen, officially launched the Gaucher Association of Australia and New Zealand (GAANZ) in early October as part of International Gaucher Awareness Month, posting an information video on the association’s Facebook site that has already been watched 57,000 times.
Gaucher disease is estimated to affect just one in 57,000 births in Australia, but is slightly more prevalent within the Ashkenazi Jewish community.
It is a lifelong condition where the enzyme for the breakdown of fat cells in the body is either missing or deficient, causing symptoms if left untreated including chronic fatigue, bone damage, anaemia and in extreme cases, even death.
Goodman has been receiving fortnightly enzyme replacement infusions at the Royal Children’s Hospital in Randwick to remain healthy since he was nine months old.
He told The AJN last week it will be important for GAANZ to push to safeguard available funding and resources for Gaucher Disease patients, and to include the condition on the newborn bloodspot screening program.
The new organisation will function as a hub to bring people with Gaucher Disease, and their families, together – something Goodman said was missing when he was a child.
“When you are diagnosed with Gaucher Disease you don’t really know what it is, so it can be really scary,” he said.
“Just being able to speak to other people with the disease, and receive guidance from them, can be so helpful and reassuring – that’s the feedback I’ve been receiving.”
GAANZ’s launch is the latest accomplishment in health advocacy by the proactive teen, who has just been announced as one of four finalists for 2019 NSW Young Australian of the Year.
After securing more than 70,000 signatures in an online petition in 2017, meeting politicians and appearing on programs including The Project, Goodman was successful in convincing NSW Premier Gladys Berejiklian to deliver an $11 million package to reduce hospital parking fees for patients that require regular ongoing treatments.
And 31,000 people have signed his latest petition on Change.org calling the federal government to urgently bolster the national newborn screening program for rare diseases, to prevent more babies dying from treatable conditions.
“The support from the community is amazing, and in June I had a meeting with the federal health minister [Greg Hunt] which went well, so I’m feeling optimistic of further progress.”
For more information, visit www.facebook.com/GaucherANZ.
SHANE DESIATNIK
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