Two Sunshine Coast schools and a local Noosa swimming group last week joined thousands of others interstate and around the world to #ShowYourStripes for Rare Disease Day and helped raise funds to cure local Coolum girl, Tallulah Moon Whitrod, of a rare degenerative disease.
Tallulah Moon’s mother Golden Whitrod heads up the local Foundation Genetic Cures for Kids and its first campaign- Our Moon’s Mission – which is funding research to cure the neurodegenerative rare disease, Hereditary Spastic Paraplegia Type 56, or SPG56.
The hereditary disease is a neurological disorder characterised by a progressive spasticity and muscle weakness of the lower limbs that has two subtypes, uncomplicated and complicated forms. Accompanying clinical features can include intellectual disability, dystonia, cerebellar ataxia, subclinical peripheral neuropathy and visual impairment.
“Tallulah is one of more than 300 million people living in the world with a rare disease, and of those millions, only a small percentage have access to treatments right now,” Golden said.
“Our campaign to cure SPG56 was clearly born from our innate desperation and determination to save our daughter, but importantly by developing that cure, our researchers at University of Queensland and Griffith University are developing a replicable framework that could be used to find treatments for other rare diseases, of which there are over 7000,” Golden said.
Noosa Swimmin’ Wimmin (and men), a group of local ocean swimmers backed Our Moon’s Mission at sunrise on Noosa Main Beach by painting their bodies in zinc stripes to join in the international celebration of #ShowYourStripes for Rare Disease Day.
Meanwhile, Peregian Beach College and St Andrew’s Anglican Grammar School held uniform-free days and hundreds of students dressed in bright stripes to raise awareness for Our Moon’s Mission and Rare Disease Day.
“Not only was it fun for students to #ShowYourStripes: the Whitrod family also spoke about their rare disease journey at school assemblies, giving important context to the students about how dressing in stripes was a symbol of advocacy and inclusion” Peregian Beach College principal Shane Dupuy said.
Together, the fundraising efforts across both schools and the club raised over $3500, every dollar of which funds the active research underway at UQ’s Australian Institute of Bioengineering and Griffith Institute for Drug Discovery.
Golden said they were overwhelmed by fundraising efforts and attributed the success to the people of the Sunshine Coast who helped with raising awareness, running cake stall fundraisers and gold coin donations.
“It was a phenomenal effort, but more inspiring than the funds themselves, was the response we felt from this unique Sunshine Coast community. To feel this support, and receive this collective energy is what propels us forward in our mission to give Tallulah and kids like her the life they deserve,” Golden said.
To donate to Our Moon’s Mission: Genetic Cures for Kids, visit ourmoonsmission.org/donate/
