THE LAST day of February this year saw many across the Sunshine Coast come together to collectively, ‘show your stripes’ in an effort to raise awareness for Rare Disease Day which is observed on February 28 each year.
Two Sunshine Coast schools and a local Noosa swimming group 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 foundation ‘Genetic Cures for Kids’ and its first campaign, ‘Our Moon’s Mission’ is funding research to cure the rare neurodegenerative disease, ‘Hereditary Spastic Paraplegia Type 56’, or SPG56.
Golden stated that there are many across the world living with a rare disease.
“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.”
“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 the 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,” Mrs Whitrod 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 show their support on the 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.
Peregian Beach College Principal Shane Dupuy said it was fun for the students to show their stripes and to learn what the day was about.
“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.”
Together, the fundraising efforts across both schools and the club raised over $3,500, every dollar of which funds the active research underway at UQ’s Australian Institute of Bioengineering and Griffith Institute for Drug Discovery.
Golden Whitrod 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 www.ourmoonsmission.org/donate/