In an effort to raise vital funds that will lead to research and a potential cure, some 400 people from across the Sunshine Coast gathered in Coolum on the evening of July 21 for a global moonwalk for local charity ‘Our Moon’s Mission’.
The walk coincided with the last full moon and the wintery clear skies provided the perfect backdrop for the charity event with a very important message and cause.
The gathering was dedicated to walking for those who can’t, and to help find a cure for the rare disease known as SPG56 which is afflicting Coolum five-year-old Tallulah Moon.
The Coolum Moonwalk, held in Tickle Park, featured a variety of activities, including a full moonwalk, a drumming circle, and a raffle with over $1000 in prizes donated by generous local businesses.
As the moon rose, the Coolum wheelchair-accessible moonlit walk took off from Tickle Park, south towards Point Arkwright along Coolum’s iconic coastline, creating a picturesque and inclusive event for all ages.
Division 9 Councillor Maria Suarez opened the event and praised the parents of Tallulah and their drive to combat SPG56 and find a cure for their daughter.
“I met Tallulah’s parents before they’d had a chance to establish this charity, and in three years they’ve come so far.
“Their resolve and focus, starting research for what was initially deemed an incurable disease, is truly inspiring. Thanks to their commitment and community support, they are now close to initiating a clinical trial next year for a disease that once had no hope.”
Mum to Tallulah and Co-Founder of ‘Our Moon’s Mission’ and its parent charity ‘Genetic Cures for Kids’, Golden Whitrod stated that one in ten people live with a rare disease.
“Almost none of these diseases have treatment options and when our daughter was diagnosed with SPG56, she became one of over 500 million people without hope for a disease-free future,” Golden said.
“We decided that our family would take on the challenge, starting with SPG56.
“The scientific groundwork for a cure has been completed, and the gene therapy for SPG56 has met the necessary safety and efficacy standards to advance to the next phase. However, a lack of funding is the only obstacle between us and translating this breakthrough into a clinical trial for these precious children.”
With approximately $3 million required to manufacture the gene therapy for a small clinical trial, Tallulah’s father Chris Whitrod highlighted the need for increased support.
“These impactful events raise awareness and funds while inspiring us to persevere. We need the community’s continued support now more than ever. If you’re planning a charitable event, please consider Our Moon’s Mission and Genetic Cures for Kids as your chosen charity because every effort brings us closer to a cure.”
Join the mission to cure SPG56 and make a difference in the lives of children like Tallulah Moon. For more information visit www.ourmoonsmission.org or follow @OurMoonsmission on social media.
