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 * Home
 * Our Aims
 * What is SMA?
 * About Us
 * News and Events
 * Our Partners
 * Contact

Donate
 * Home
 * Our Aims
 * What is SMA?
 * About Us
 * News and Events
 * Our Partners
 * Contact
 * Donate Now

W
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We are a new charity aiming to raise awareness of the condition Spinal Muscular
Atrophy (SMA) and provide support to those who live with it. Learn More
A
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S
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Although SMA is the most common cause of death in children under two years old,
the disease is still relatively unknown. We would like to raise the profile of
SMA in the UK. Learn More
A
w
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n
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s
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Fundraising There are currently three approved SMA treatments available in the
world, and only one in the UK. We want to support new research and trials of the
ever improvement landscape of SMA treatments. Learn More for a Cure Encouraging
ACE SMA’s principal target and long-term objective is to enable children to have
as much mobility and free movement as they can. Learn More Exercise


ABOUT US

Read more



MAKE A DONATION

Donate now



GET INVOLVED

Coming Soon



OUR AIMS



ACE SMA’s first goal is to raise money in order to fund clinical research into
the enhanced benefits of bespoke and regular physiotherapy for children with
SMA, who are also receiving the disease’s modifying treatments. The aim of this
two year project will be to gather enough evidence in order to create long term
change in the way in which physiotherapy for SMA is funded and provided by the
NHS and/or drug companies, as well as run a pilot that can be rolled out across
the country.



The project will be in partnership with The University of Oxford and will be
overseen and delivered by Professor Laurent Servais and his team.



READ MORE






WHAT IS SMA?



Spinal Muscular Atrophy is a rare, genetically inherited neuromuscular
condition. Young children’s symptoms present themselves at different times
depending on the severity of the condition. Signs of SMA may include; muscle
weakness, breathing problems, delayed gross motor skills and difficulty with
crawling and walking. There are four types of SMA each with varying levels of
severity.



LEARN MORE






YOUR OWN FUNDRAISING




Of course everybody is welcome to undertake their own fundraising efforts for
ACE! If you would like ideas and inspiration, please email info@acesma.co.uk and
we will email you a fundraising pack. We will support all fundraisers by sending
the details out on our mailing list and use our social media to promote your
activity.



Request Fundraising Pack


ABOUT US



In 2019 our daughter was diagnosed with SMA. Although a very challenging
diagnosis we feel very fortunate to have access to the treatment that she needs.
However, we hit problems with gaining access to physiotherapy, as well as a lack
of awareness in how the treatment could help children with SMA.



We decided to set up ACE SMA to help other children who have had treatment reach
their potential and enable them to take part in as much exercise as they can to
help them live a fun and active life. The more you use the less you lose! The
importance of using muscles and keeping the motor neurons active is essential
for people with SMA to remain as independent as possible. Once a motor neuron is
lost, there is no way of retrieving it.



OUR THREE GOALS ARE AWARENESS, CURE AND EXERCISE: ACE.





AWARENESS



Although SMA is the most common genetic cause of death in children under two
years old, the disease is still relatively unknown. We would like to raise the
profile of SMA in the UK, to increase fundraising and allow more money to be
invested into research and technology, ultimately improving the lives of those
living with the condition.




CURE



There are currently three approved SMA treatments available in the world, and
only one in the UK. These are proving to have a significant impact on the
natural history of SMA, especially when treatment is given in the early stages
of life, and even more so when given pre-symptomatically.

We want to support new research and trials of the ever-improving landscape of
SMA treatments.




EXERCISE



ACE SMA’s principal target and long-term objective is to enable children to have
as much mobility and free movement as they can. Although there is plenty of
evidence to demonstrate that movement is hugely important to quality of life,
until recently there has been limited scope for what this can actually entail
for the majority of sufferers due to the debilitating nature of the condition.
Now that new treatments are available there is a better chance of SMA sufferers
not only being able to move more freely but even being able to walk where
previously they would not have.




BECOME A 'FRIEND OF ACE'

Become a friend of ACE for a minimum donation of £50 per annum. If you are a
friend of ACE you will be the first to be approached to attend or support any
events and kept in the loop via our mailing list and newsletter with key
updates.

Become a Friend
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ABOUT ACE SMA

We are a new charity aiming to raise awareness of the condition Spinal Muscular
Atrophy (SMA) and provide support to those who live with it.

GET IN TOUCH: INFO@ACESMA.CO.UK

FOLLOW US: ACE SMA




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