Global Moonwalk unites 800 of ‘Tallulah’s Army’ under serendipitous full moon
What an incredible journey we’ve been on together! On the Full Moon of 21 July, more than 800 amazing #TallulahsArmy supporters from around the globe came together for the Global Moonwalk for Our Moon’s Mission. From the USA, Nicaragua, Spain, Ireland and all across Australia, moonwalkers united with one goal: to raise awareness and funds to help cure SPG56, the rare disease that our precious five-year-old Tallulah Moon stoicly battles every day.
The outpouring of support from businesses, local council, and our ever-growing community of supporters has been nothing short of awe-inspiring. Your generosity and solidarity have been the driving force behind our mission to bring a gene therapy for SPG56 to clinical trial.
Here on the Sunshine Coast of Australia, as the moon rose, we launched the Coolum Moonwalk for Our Moon’s Mission. Seeing 400 people come together along our beautiful coastline created an evening of pure joy and hope. Sunshine Coast Councillor Maria Suarez’s opening speech moved us deeply. She recognised the dedication and perseverance that has defined our journey since we first learned of Tallulah’s diagnosis. Cr Suarez noted “I met Tallulah’s parents before they established this charity, and in three years, they have achieved so much, now thanks to their commitment and community support, they are close to initiating a clinical trial next year for a disease that once had no hope.” Cr Suarez’s words resonated with everyone present and reinforced our determination to turn what was once deemed impossible into reality.
Each step we take in these moonwalks is a step closer to raising the awareness and funds necessary to push forward with the research for SPG56. This rare neurodegenerative disease, which impacts Tallulah’s ability to walk and talk, is a battle we fight not just for her, but for children worldwide.
When Tallulah was diagnosed, we were heartbroken to learn that there were no treatment options available for her. She became one of approximately 500 million people living with a rare disease without hope for a treatment or cure. It was in this moment of despair that we decided to take on the challenge of finding that hope ourselves. If big pharma wasn’t going to address this shocking unmet need, then we would.
This year’s moonwalk held special significance as it coincided with the 56th anniversary of the historic moon landing on July 21, 1969. Just as humanity once achieved the extraordinary feat of landing on the moon, we believe that with enough resolve, collaboration, innovation, and funding, we can find a cure for SPG56.
Now with the scientific groundwork laid, a gene therapy has met the necessary safety and efficacy standards to advance to the next phase. However, we still face the significant hurdle of funding. Approximately $3 million is needed to manufacture enough gene therapy for a small clinical trial. We are deeply grateful for every dollar raised across the world on this global walk, stepping us assuredly onwards and upwards through this massive mission.
My husband Chris and I are continually inspired by the community’s generosity and spirit. “These events raise awareness and funds but more than anything, give us the energy to get up every day and keep going,” Chris has often reflected. We are overwhelmed with gratitude for everyone who participated and helped make all of the events around the globe such a resounding success. Together, we raised AUD $17,619, bringing us closer to the proposed SPG56 clinical trial for Tallulah and others affected by this condition.
To everyone who joined us, supported, donated and spread the word: thank you from the bottom of our hearts. Your support gives us the strength and capacity to keep pushing forward. Please continue to stand with us as we work towards a cure for SPG56. For more information and to stay updated on our journey follow @OurMoonsmission on our socials.
With gratitude and hope, let’s make this moonshot a reality.
