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).
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.
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.
News and Updates

Thank You Cassidy & Tate for championing SMA Awareness
Rally Round Rupert would like to extend a heartfelt thank you to Cassidy and Tate,

Rally Round Rupert Funds £100,000 for Groundbreaking ACE SMA Physio Trial at University of Oxford
Rally Round Rupert, a charity committed to improving the lives of children with Spinal Muscular

SAPSMA Raises £623 to Support Rally Round Rupert
The St Albans Primary Schools Music Association (SAPSMA) has raised an incredible £623 for Rally