At Rally Round Rupert, 2024 was a year of progress, passion, and profound impact. As we reflect on the past twelve months, we’re proud to share the milestones captured in our RRR Annual Report 2025 —a testament to what can be achieved when a community comes together with a shared mission: to support families affected by Spinal Muscular Atrophy (SMA) and accelerate clinical research that changes lives.
💙 Our Mission in Action
Our charitable purpose remains firmly rooted in two key pillars:
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Raising awareness of Spinal Muscular Atrophy (SMA)
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Funding critical clinical research to improve the lives of children and their families impacted by the condition
With your support, we were able to turn these aims into real, measurable action throughout the year.
🚶♂️ The 100 WALK 100: A Landmark Event
One of the highlights of our year was the incredible 100 WALK 100 event. In June 2024, more than 100 participants walked 100 miles along the beautiful Cotswold Way over three days. Not only did the event generate an astounding £110,000 in donations, but it also gained widespread media attention, helping us shine a light on SMA like never before.
The journey began in Chipping Campden and ended at the historic Bath Cathedral—a powerful reminder that every step counts in the journey toward medical progress.
🧪 Advancing Research with Leading Institutions
Thanks to the generosity of our supporters, we were able to fund two major research projects in 2024:
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£107,000 was pledged to Great Ormond Street Hospital and ICANS in Milan, Italy to launch a two-year nutritional study ‘SMA4Nutrition’. Early work is underway, with results expected in 2026/27.
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£100,000 was awarded to the University of Oxford to fund a clinical trial ‘ACESMA’ exploring physiotherapy for children with SMA.
These initiatives are more than numbers—they represent hope, innovation, and the power of partnership.
🔭 Looking Ahead
Building on a successful year, we’re excited to share that we’re in discussions with NHS Sheffield Children’s Hospital about a new clinical research project ‘SMA Spinal Management Study’. We’ll keep you updated as the plans develop throughout 2025.
💬 A Thank You from the Trustees
We want to extend a heartfelt thank you to everyone who supported us in 2024. Whether you donated, walked, volunteered, or simply shared our story—you are part of the change. As a charity led by a passionate group of trustees and powered by community spirit, we couldn’t do this without you.
📊 Financial Highlights
Here’s a snapshot of our financial activity:
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£132,187 raised through fundraising
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£165,396 directed to charitable activities
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£143,492 in reserves as of January 2025, including £41,604 committed to ongoing projects
We remain financially stable, with adequate reserves to fund future research while maintaining our operational commitments.
Together, we’re making strides in the fight against SMA.