Professional Documents
Culture Documents
MOMENTUM
NEWS
SMA REACH UK
Clinical Project
The SMA Trust has been funding a 300k
2 year clinical project, SMA REACH, with
the ultimate aim of facilitating successful
clinical trials in the UK. The research
teams, based at Great Ormond Street
Hospital/UCL Institute of Child Health
and Newcastle University, have been
working on establishing the first national
agreement on medical and physiotherapy
assessments and standards of care for
patients with SMA.
We are delighted to report that the teams
have accomplished a great deal and have
created an invaluable tool for the preparation
of clinical trials in four important ways:
A single patient database has been
created enabling validated information
on genetic diagnosis and accurate
up-to-date clinical details about SMA
and how the condition changes over time.
Cotswold
Way Walk
Take the
Research
UPDATE
Page 2
It might sound
daunting, but it isnt!
Get together with friends, family
and colleagues and clock up a
cumulative 1000 miles as a team.
All you have to do is travel 1000
miles theres no time limit and no
limit on how many people you get
to help you. You could bike, row your
boat, walk the dog, take part in a run,
do an exercise class, ride your horse
or even knit! Everyone can take part
and every contribution will help you
reach your 1000 mile target.
FUNDRAISING
TEAM NEWS
Page 4
www.smatrust.org
SMA
STORIES
Page 6
RESEARCH
ACTIVITIES
update
January 2016 saw the start of the first
ever UK SMA Research Consortium.
The lead scientists from each of the teams
in Oxford, Edinburgh, Sheffield and
Royal Holloway London have recruited
the Post-Doctoral scientists who will be
working on the project over the next three
years. A Research Coordinator has also
been appointed to manage the overall
project, based in Oxford. Read more
en
It is important to consider
changes that can occur in
other parts of the body when
performing clinical and
therapeutic studies in SMA.
were changed in the SMA motor neurons.
This is in line with previous findings by
other researchers and illustrates how
novel disease models can be used to
advance the understanding of processes
that underly SMA.
Finally, Prof Chien-Pin Ko of the
University of Southern California
investigated cells from SMA mouse
models and showed that astrocytes
(cells that support neurons and are very
common in the nervous system) influence
the function of motor neurons in SMA.
Their detailed studies indicated a role for
a specific protein in these changes, making
it a future target for therapy development.
This study is another demonstration of
how cell types other than motor neurons
are important in SMA.
For more information about our current projects visit the research
section of our website www.smatrust.org and click on Current Projects
2
RESEARCH
ACTIVITIES
Annual meetings
SMA Europe is preparing for its annual
meetings, which will be hosted by
the Spanish organisation, FundAME,
in Madrid. There is a full programme,
which will span three days and include
a series of individual meetings with
pharmaceutical/biotech industries which
have either an active SMA programme
or one in the pipeline. With 6 potential
therapeutic products now in clinical
development, SMA Europe is keen
to play a lead role in ensuring the
successful clinical development of
these products in Europe.
New website!
SMA Europe has launched its new
website www.sma-europe.eu
FUNDRAISING
UPDATE
FUNDRAISING
Team News
NEW TEAM Team Jude
(Surrey)
Team Rowan
Team Rowan
continues to be as
busy as ever with
their fundraising:
Dean, Jodie,
Robert and Donny
ran the Birmingham
Half Marathon in
Matt
October, raising over
500 between them, and London based
supporters from Capita raised over 1000
giving up the booze for the whole of January.
Rowans dad Matt has been allocated
a London Marathon place and is training
hard to achieve his fundraising target; whilst
other members begin planning their annual
Onesie Walk taking place around the time
Rowan would have turned 5.
Team Abigail
Team Alexa
KATIE SANDEL
Team Layla
Katie Sandel ran the Great South Run in
memory of Layla raising a fantastic 561.
Supporters of Team Layla now eagerly
await confirmation of their 2016 challenges
from grandad Steve Andrews. How on
earth do you beat a challenge like their
2015 Great Glen canoe trail?!
www.smatrust.org
FUNDRAISING
Team Lily-Bea
Team David
Team Tiegan
Nic and Ade from The White Harte
in Kinver have embarked on a weight loss
fundraising journey. They will also host
an open mic night in May.
Team Hollie
Ritchie Armer concluded a year of growing
his hair and beard in November 2015. He
raised a fantastic 490! Team Hollie will
host their annual ball in April and Hollies
mum, Paula, says: This is our 4th year
hosting a ball for The SMA Trust, this year
is a Mad Hatters Tea Party theme so will be
a little crazy! We decided to make this an
annual event as it brings SMA families from
all over the UK & Ireland together for one
night and everyone in the room just gets it!
Its great to see the families and especially
the kids all enjoying the evening and raising
funds for the trust. Our kids future is our
motivation to keep this event going.
Team Emelia
Team Emelia has been keeping it in the
family with some brilliant fundraising efforts
over the last few months. Dad Luke and
Uncle David took part in Iron Run raising
over 200. Great grandma Judy swam 4k
lock to lock in September raising over 600!
All this while Grandma Claire organised
a race night and a Ceilidh!
E DINNER
TEAM MARNI AT TH
Team Henry
Last year, family member, Mark Jardine,
organised a (very wet!) golf day with
Poundfield Products, raising 2300. Friends
Eileen and Pete Molesdale raised 654
by holding a coffee morning. Marriott Motor
Group organised a Christmas jumper day
across the dealerships raising over 1000.
Close family friend, Cathy Ryan, has taken
on the 1000 mile Challenge with dog Bess.
Cathy also organised an event called Women
Who Inspire, raising an excess of 1000.
Henrys Granny held a fizz and pie lunch for
friends and colleagues, raising 204. Next up,
Henrys Dad, Paul, and two colleagues are
running in the Felixstowe Fun Run in May.
Team Marni
N RUN
Team EMELIA IRO
UPDATE
SMA
STORIES
Rowans Story
By Sarah Poole
ACTIVITIES
UPDATE
Continuing to support
ground-breaking research
and clinical trial initiatives
Nuffield Department
of Clinical Neurosciences
Charity of the Year
The SMA Trust has been chosen as
the charity of the year by the Nuffield
Department of Clinical Neurosciences
(NDCN) at Oxford University, meaning
they will be fundraising for The SMA Trust
throughout 2016!
Fundraising got off to a great start with
a Card, Cake and Pancake Sale event
in February where staff baked cakes,
cookies, and flipped pancakes to raise
money for The SMA Trust raising over
200 in just a few hours.
NDCN is now gathering teams to participate
in our 2 main challenges, Ride Scorpion
and the Cotswold Way Walk. There is also
a group of dedicated walkers and cyclists
who are tracking their miles for our 1000
Mile Challenge, resulting in a departmental
Walk to Australia Challenge, aiming to travel
10,000 miles by the end of December!
They will be kicking off the Walk to Australia
with a walk to their local pub, when they
will invite everyone in the department to join
Save the date! UK SMA Awareness Week 26th Sept 2nd Oct 2016
We are already busy planning this years UK SMA Awareness Week. Look out for
more information coming your way about how to get involved.
www.smatrust.org
Team NEWS
Tim Wraith
FURTHER
INFORMATION
GET IN TOUCH
Chief Executive Joanna Mitchell joanna@smatrust.org
Research Co-ordinator Vanessa Christie-Brown vanessa@smatrust.org
Community & Events Fundraising Manager Mary Boullin mary@smatrust.org
Trusts & Partnerships Fundraiser Tim Wraith tim@smatrust.org
Marketing & Communications (P/T) Alison Braithwaite alison@smatrust.org
Fundraising Support & Social Media (P/T) Sarah Poole sarah@smatrust.org
Finance Officer (P/T) Steve Dolphin steve@smatrust.org
The SMA Trust 1c Atherstone Barns, Atherstone on Stour, Stratford-upon-Avon,
Warwickshire CV37 8NE Telephone: 01789 801155
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Data Protection: If you no longer wish to receive this newsletter or any information about The SMA Trust,
please email info@smatrust.org or call 01789 801155.
1 in every
6,000 births is
affected by SMA
Leaving a gift in your
will TO THE SMA TRUST
Leaving a gift in your Will will help to ensure that
we can continue to fund research into finding
a cure and treatments for SMA, which is still
the leading genetic killer of children under 2.
By leaving a gift, no matter the size, you
will continue to make a positive impact and
motivate change beyond your lifetime. If this
is something you choose to do, it is important
that our name, address and charity number
are featured in your Will:
The SMA Trust
1c Atherstone Barns,
Atherstone on Stour,
Stratford-upon-Avon,
Warwickshire CV37 8NE
Registered Charity Number: 1097765
Please see our website for more information or
contact the Fundraising Team with any queries.
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