Some 400 people gathered in Coolum to join a global moonwalk for Our Moon’s Mission, an event that fetched 800 Tallulah’s Army supporters worldwide.
This remarkable gathering was dedicated to walking for those who can’t and to helping find a cure for the rare disease afflicting Coolum five-year-old Tallulah Moon, SPG56.
The Coolum Moonwalk, held on Sunday 21 July in Tickle Park, featured a variety of activities, including a full moon walk, a drumming circle, and a raffle with over $1000 in prizes donated by generous local businesses. Participants enjoyed the park festivities including facepainting by Dainty Daisy Painting and food vans, Deadly Espresso and Gaucho Noosa.
All businesses involved wholeheartedly offered their services to help fundraise for this medical mission to bring a gene therapy to clinical trial for SPG56.
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.
Sunshine Coast Councillor Maria Suarez opened the event and spoke emotionally about the parents’ dedication to combating SPG56.
“I met Tallulah’s parents before they’d had a chance to establish this charity, and in three years they’ve come so far,” she said.
“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.”
The Global Moonwalk events are dedicated to raising awareness and funds for rare disease research, specifically to support the pathway to a clinical trial for SPG56.
This rare neurodegenerative disease is progressive and impacts Tallulah Moon and children worldwide in their ability to walk and talk.
Golden Whitrod, co-founder of Our Moon’s Mission and its parent charity, Genetic Cures for Kids, shared, “One in ten people live with a rare disease, and almost none of these diseases have treatment options.”
“When our daughter was diagnosed with SPG56, she became one of over 500 million people without hope for a disease-free future. We decided that if big pharma wasn’t going to address this shocking unmet need, then our family would take on the challenge, starting with SPG56.”
This year’s moonwalk coincided with the 56th anniversary of the historic moon landing on 21 July, 1969.
Just as humanity achieved the extraordinary feat of landing on the moon 56 years ago, Our Moon’s Mission underscores the potential for science and innovation to cure SPG56 today.
Golden said, “Achieving what once seemed impossible is truly a matter of resolve, collaboration, innovation, and funding. With the rapid advancement of gene therapy, family foundations like ours exist in a fortunate time where we can make real progress and give these children the life they deserve.”
“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,” he said.
“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.”
Golden expressed gratitude for the overwhelming support received.
“We are deeply grateful to everyone who participated and helped make the event in Coolum, and all the global events, a success. Together, we are making strides towards curing SPG56,” she said.
The global events, which included locations in Oregon, USA, Nicaragua’s Emerald Coast, Spain’s Mallorca, and Australia’s Darwin, Perth, Point Edwards, Bondi Beach, Canberra, Murwillumbah, Ballina, and Coolum, collectively raised AUD $17,619.
Every dollar will support the clinical-grade manufacturing of gene therapy, bringing us closer to the proposed SPG56 clinical trial for Tallulah and others affected by this condition.
For more information and to stay updated on future events, visit ourmoonsmission.org or follow @OurMoonsmission on social media.
