Welcome!
Raising awareness and funds in support of clinical research for spinal muscular atrophy (SMA)
research for spinal muscular atrophy (SMA)
100% of money raised funds clinical research projects.
Our Objectives
To relieve the need and protect the health of children and their families affected by Spinal Muscular Atrophy (SMA) throughout England & Wales for the public benefit by:
- Working to improve the understanding and knowledge of Spinal Muscular Atrophy (SMA) among the public.
- Providing financial support to further advance clinical research into Spinal Muscular Atrophy (SMA).
Making a Difference: Where Your Donations Go
Rally Round Rupert has been making significant strides in its mission. Through a combination of generous donations and fundraising efforts, we have funded clinical projects that will dramatically improve the lives of those with SMA.
Additional Allocations
RUNFOREMMA (£35,100)
This donation funds projects that support children with serious disabilities
Great Ormond Street Hospital (£23,900)
This donation supports general operations at the hospital.
SMA UK (£19,700)
This allocation contributes to the general operations of SMA UK.
SMA Poland (£500):
This allocation contributes to the general operations of SMA Poland.
St Albans Special Education Needs Department (£100)
This allocation supports the provision of sensory equipment for children with special needs.
Key Allocations
This observational longitudinal study aims to investigate nutritional status, body composition, energy expenditure and dietary habits in infants and children with SMA types I and II treated with the available therapeutic options. e secondary aim is to evaluate the role of body composition and energy metabolism of fat free mass (kcal/kg) as biomarkers to predict response in patients receiving disease-modifying treatments.
Trial to commence October 2024, duration 24 months.
Our Partners:
Great Ormond Street Hospital - LONDON
Department of Food Environmental and Nutritional Sciences (DeFENS)
University of Milan
RUNFOREMMA
A Monocentric, Prospective and Longitudinal study investigating the acceptability, feasibility, safety and efficacy of an optimised rehabilitation program for treated patients with SMA compared to the current rehabilitation program in the United Kingdom.
Trial commenced June 2024. Duration 24 months.
News and Updates
Meet Rupert: The Inspiration Behind the Charity
Meet Rupert: The Inspiration Behind the Charity In this blog post, we want to introduce
100 Walk 100 2024 – The Cotswold Way Challenge
Are you ready for an adventure that combines breathtaking scenery, physical challenge, and the opportunity
Rally Round Rupert raises over £109,000 raised for SMA clinical trials
In June 2024 100 walkers embarked on a 100 mile walk challenge, in support of