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Issue 8 April 2016

MOMENTUM

NEWS

Dedicated to finding a cure and treatments for Spinal Muscular Atrophy

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.

This will provide clinicians and researchers


with a rich resource of information on
a large collection of SMA patients.
Longitudinal data (repeated, standardised
observations of patients over long periods
of time) has been gathered through the
recruitment of 95 patients.
In collaboration with the PNCRN (Paediatric
Neuromuscular Clinical Research Network)
in the US, together with the Italian network,
the revised muscle function assessment
scales have been used for the past year
and 157 patients have been assessed
across the 3 international networks.
SMA REACH UK has been leading
the development of the scale, which
is now being written up for publication.

Cotswold
Way Walk

Take the

25th & 26th June


Entry fee: 30

Join us for the Cotswold


Way 50 mile sponsored walk
through the night on June 25th from
Painswick to Chipping Campden, enjoying some
of Britains most beautiful landscapes while watching
the sun rise. The walk finishes on 26th June with
a welcome reception for walkers, family and friends.

50 miles too much?


20 mile and 10 mile
options available
on Sunday 26th June!
Perfect for those who
dont want a race, looking
for good company, this
challenge is suitable for
anyone of any age.

Get family, friends and work colleagues


involved by forming a team.

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

Also, across the 3 networks, parent/


patient questionnaires and focus groups
have been used to establish which small
changes make the biggest difference.
We are delighted to be continuing our
support, which will involve expanding the
network nationally and validating the revised
assessment scale finalised in the first part
of the project. In addition, the team will be
looking at correlating clinical outcomes
to biomarkers (molecules that can be
detected and measured in parts of the
body like the blood or tissue), as this could
help to identify why there are differences
in the disease course between different
SMA patients; Finally, longitudinal data
from children with SMA Type 1 would be
collected for the first time and the network
formally expanded to include the US SMA
network, the PNCRN.

We started the 1000 mile challenge


with only around 5 of us but soon
grew to well over 20 once family and
friends knew what we were doing
and wanted to get involved. My team
ran, cycled, walked, walked the dog,
did boot camp, Zumba, spinning
and we even did some paintballing.
Sophie Freeman, Team Isabel

TEAM ISA BEL

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

on the consortium page on our website


www.smatrust.org/research/researchprojects/uk-sma-research-consortium

The team will:


Establish an internationally leading
network of UK research collaborators
who will develop and execute a
coordinated SMA research program to
maximise the impact of existing synergies.

Join us in making the voice


of rare diseases heard

Every year scientists and clinicians


publish over 250 research papers that
discuss SMA in one way or another.
I will use this space to explain several
recent studies and why I think they
provide important progress in the
understanding of SMA.

The SMA Trust co-funded 2


of the 3 following studies.
SMA RESEAR CHE R, Ewo ut Gro

We look forward to our first


update meeting on 9th June 2016.

Rare Disease Day

Dr Ewout Groens Column

The first study focused on the role of


SMN outside motor neurons. In their
study, the research group of Prof Simon
Parson at the University of Aberdeen
showed that changes in the growth
of blood vessels are important in the
development of SMA. This is interesting
because many researchers view SMA
as a disease that specifically affects motor
neurons. By demonstrating that changes
also occur in other types of cells, Prof
Parson and his team show that changes
in SMN have wide-spread consequences
throughout the body, including outside
the muscles and the nervous system.
It demonstrates that it is important to
consider changes that can occur in
other parts of the body when performing
clinical and therapeutic studies in SMA.
In the second study, Dr Heidi Fuller
of Keele University and her colleagues
investigated changes in the amount
of protein in a specialised cell model
of SMA. In this model, motor neurons
grown from were stem cells that were
generated from the skin of SMA patients.
The motor neurons were then studied
using state-of-the-art methods that allow
the quantity of every protein present in
a cell to be determined. Amongst other
changes, they found that proteins that
regulate the recycling of other proteins

Develop existing drug targets and


identify new neuroprotective therapies
to maintain function throughout the
life of SMA patients.
Identify improved delivery methods
for SMN and non-SMN based therapies.

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.

On the rarest day, 29th February,


organisations all over the world held
activities to raise awareness of rare
diseases and their impact on patients
lives, amongst the general public and
decision-makers. This year, the theme
was based on the role the patient voice
plays in instigating change that improves
their lives and the lives of their families
and carers.
The SMA Trust attended a Rare Disease
Day event at The Royal Holloway in
London, organised by Professor Dickson
and Dr. Yanez. The day was geared
to A level students considering a career
in Medicine or biological sciences. Our
Research Co-ordinator, Vanessa, had a
stand and spoke with numerous students
about SMA, its genetic cause and the
exciting research developments that
have led to current clinical trials.

tHE SMA TRUST


STAND

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

Clinical Trials Update


Since our last newsletter Roche has
entered a second compound into clinical
development, RG7916, which is being
tested in The Netherlands. Like the original
programme which had to be put on hold,
RG7916 works on the back-up gene,
SMN2. Ionis/ Biogen started recruiting
for their pre-symptomatic infant trial,
Nurture, in a number of sites, including
GOSH in the UK; Cytokinetics initiated
enrolment of patients for a Phase 2 study
testing Tirasemtiv in teens and adults
with SMA Type II, III or IV, in California
and Avexis published preliminary results
for their Phase 1 trial of avxs-101.
There are currently 6 potential products
in clinical development, which tackle
treating SMA in different ways:
Compounds which act on the back-up
gene, SMN2, to increase the production
of functional SMN protein, which is
essential for the survival of motor
neurons: Biogen/ Ionis Nusinersen,
Roches RG7916 & Novartis LMI070;
Gene therapy which seeks to replace the
missing SMN1 gene: Avexis avxs-101;
Compounds which work on improving
muscle strength: Cytokinetics Tirasemtiv
Compounds which protect the motor
neurons which are under stress in SMA:
Trophos/Roches Olesoxime.

Sma Europe News


Standards of
care workshop

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.

A workshop took place in Holland in


February, devoted to updating clinical
care guidelines for SMA, which will not
only improve standards/consistency,
but also be invaluable in running future
clinical trials. 2 SMA Europe Board
members represented the patient
voice on behalf of the organisation.

Call for SMA


research proposals
SMA Europes 8th Call for Research
Proposals closed on 9th December
2015, with an impressive total of 18 grant
applications received. The Scientific
Advisory Board will meet this month to
recommend the best projects for funding.

New website!
SMA Europe has launched its new
website www.sma-europe.eu

Recent research events that


The SMA Trust attended
The 5th International Congress of
Myology in Lyon (16th-18th March)
UK Neuromuscular Translational Research
Conference in Oxford (22nd March)
The 7th Neuroscience Symposium
at the University of Oxford (23rd March)

The SMA Trust


will be attending the
following events over
the next few months:
SMA Europe annual meetings at the
Spanish Research Council in Madrid
(14th-16th April)
The 1st UK SMA Research Consortium
bi-annual meeting in Edinburgh (9th June)
Cure SMA Researchers Meeting
in California (16th-18th June)

The child of two


carriers has a one
in four chance of
developing SMA
3

FUNDRAISING

UPDATE

FUNDRAISING

Team News
NEW TEAM Team Jude
(Surrey)

NEW TEAM Team Harry


(Birmingham)

Jude sadly passed


away from SMA Type
1 aged just 20 weeks
and 2 days old last
June. So much
fundraising has
already taken place
in his memory - sisters
Lucy and Sam recently
Jude
ran the Surrey Half
Marathon raising over 250,
Judes mums work held a Christmas jumper
day and a quiz night at a local nursing home
raised 320. Helen Fleck and Mark Soale
will both be running marathons in memory
of Jude later this month.

Big plans for fundraising


this year with
arrangements for
a superhero themed
dinner dance well
underway. Harry
passed away from
SMA Type 1 in
November 2015,
Harry
less than 23 weeks old.
Mum Penny, and Dad Jason, along
with friends and family want to raise funds
for The SMA Trust so no other family has
to suffer like they have. Beck Coventry
has already taken part in a very muddy
wolf run raising over 100.

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

Aliya and Theresa

NEW TEAM Team Ayden


(London)
Fundraisers in the name of Ayden
Anjarwalla, who is just under 2 years old
and has SMA Type 2. Aydens great aunt
Dilu held a Girlies Lunch in September and
raised 2,000. Laila Coffey, Aydens aunt,
took part in the Royal Parks Half Marathon
and raised 680 and Aydens mum Aliya
and her friend Theresa took on the amazing
challenge of the Kilimanjaro Marathon in
February. So far they have raised a brilliant
6,000 and the donations are still coming in!

November saw Sam Addley, Kimberley


Garner and Sadie Mcmanu take part in
the 10k Abbey Dash raising 515. Running
trainers were changed to dancing shoes
in the Huddersfield ceilidh organised by 15
year old Ivy Oldroyd who raised 200. Fran
Brook and daughter Mollie completed the
Silverstone Half Marathon, a record distance
for 17 year old Mollie. Team Abigail will
also be supporting James Walker when
he takes on the London Marathon.

Team Alexa

In November 2015 Ben Walmsley, Chris


Clark, David Brogan and Steve Hearn
of Team Alexa competed in the Antarctic
Ice Marathon. Ben came third in the event
with a time of 04:55:33!

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?!

NEW TEAM Team Elsa


(Rotherham, S Yorks)
Team Elsa has
been working hard
at fundraising in
memory of beautiful
Elsa who passed
away from SMA
Type 1 in April 2015,
aged just 9 months.
Elsas dad Gareth
grew a moustache
Elsa
during November and raised
377 and cousin Richard took on the
Brighton Half Marathon in just 1:46:17.
4

TEAM ALEXA ICE MARA THON

www.smatrust.org

FUNDRAISING
Team Lily-Bea

Team David

Team Lily-Bea has


had a busy couple of
months fundraising
for The SMA Trust.
December saw LilyBeas mum Hannah
use her muscle
power to create some
lovely cakes, goodies
and gifts for her annual coffee
morning raising over 500. Hannah also
completed the Cambridge Half Marathon in
2:21 raising over 800!

Team David has secured us as one


of the benefitting charities of the Hilton
Deansgates 10th Anniversary Star Ball in
Manchester on 8th October. Proceeds will
be split equally between The SMA Trust and
the DM Thomas Foundation. Barrie Taube,
Antony Segal and Jamie Moryoussef took
on the Barcelona marathon and raised over
10,000 to be shared between The SMA
Trust and A Smile for Orly.

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

CATHY RYA N AND BES S

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

Muscle Power Dinner


350 Supporters of The
SMA Trust attended The
Muscle Power Dinner at
The Underglobe underneath
the iconic Globe Theatre in
London on 14th October 2015.

UPDATE

The evening kicked off with a champagne


reception and then guests were taken
down the stairs into the main area
beautifully lit by candlelight. The evening
included interviews by BBC presenter
Tim Wilcox with teenagers who had
SMA. They talked about the challenges
they face but also their positive attitudes
and what really matters to them in
life. Professor Kevin Talbot was also
interviewed about how the new UK SMA
Research Consortium is particularly
focused on improving the lives of people
living with SMA. Guests were treated to
a delicious 3 course meal and a taste
of Shakespeare as well as both live and
silent auctions. The event raised over
100,000 for the UK SMA Research
Consortium. A huge thank you to Tim
Sheffield, Tessa Rice and their fellow
committee members for bringing together
this incredible event.

SMA is the leading


genetic killer of
infants and toddlers

Team Marni has 10 supporters taking part


in the Leeds 10k in the summer. One of their
runners will be Anna Carter, head coach
of the Yorkshire Jets netball team!

Lunch with Tesco


CEO, Matt Davies

Long term supporters and outstanding


fundraisers Team David organised
a unique charity event in September.
Team David supporters from across
the country joined Matt Davies, CEO
of Tesco UK and Ireland, for lunch
at The Point, Emirates Old Trafford
in Manchester. Matt was interviewed
by Bill Turnbull of BBC Breakfast fame
and shared his incredible success story
and experience in both retail and business
transformation to a captive audience, who
then went on to dig deep and bid in a live
auction. The event raised over 85,000
for The SMA Trust!

MAT T DAV IES

SMA

STORIES

To read Rowans full story,


visit www.smatrust.org/
what-is-sma/about-sma

Rowans Story
By Sarah Poole

Rowan was our first baby born in May


2011. All mums are told to not compare
their babies but it was just this that led
me to have concerns about Rowans
development. At 6 months I commented
to our health visitor that she didnt reach
out or grab anything. I was told that each
baby developed differently and my concerns
were dismissed. Only when bringing it up
numerous times, noting that Rowan had still
not rolled over or made any attempt to sit up

Rowan and Mum Sarah

unsupported were we referred to the local


hospital. After being initially misdiagnosed,
Rowan was finally diagnosed as having
SMA type 1. Being told that type 1 SMA
babies rarely live beyond their 1st birthday
and Rowan being 10 months old, we didnt
know how much time we had with her but
would treasure every second.
Rowan was first admitted to hospital in
June 2012. It was such a scary experience
seeing my girl so weak and helpless and
me not been able to do anything for her.
After an 11 day stay we came home with
a feeding pump, tubes and a suctioning
machine. This marked the start of a lot
of intervention from a host of services.
Rowan became poorly again in September
2012. Doctors prepared us for the worst.
Every day was bad news and a bigger
battle for our beautiful girl. They suggested
transferring us to the local childrens
hospice Bluebell Wood for end of life
care, heartbreakingly we agreed. Rowan
triumphed proving every doctor wrong,
and we enjoyed an extra 6 weeks with
Rowan at home.

Challenge Events 2016!


Ride Scorpion 7th May
Sign up for Ride
Scorpion and cycle
100, 60, 20 or 8
miles...all finishing
with a welcome
reception to
celebrate your
achievement
at the finish line
at beautiful The
Howard Arms in the Warwickshire
village of Ilmington in the Cotswolds.
Choose your route/distance:
Great Ormond Street Hospital (London)
to Ilmington 100 miles in total
Ilmington to Bicester and back
60 mile circular route
Ilmington to Sutton-under-Brailles
and back 20 mile circular route
Sutton-under-Brailles to IIlmington
8 mile fun cycle
or you can choose your own
starting point!
Fun Cycle Bring family & friends and
join us for the last leg of 8 miles through
beautiful Cotswold countryside.
Entrance Fees: 10-50 depending
on the length of route selected
6

Matt, Ro wa n & Sarah

Then one beautifully bright morning after an


unsettled night I knew this was the day. Later
that afternoon Rowan took her final breath
whilst holding my finger. She passed away
peacefully at home full of love at 18 months old.
Life without Rowan is hard, its like a constant
piece of me is missing. A big distraction for
me has come from fundraising and we have
so far raised over 65,000 with the help
of family & friends in memory of Rowan.
In June 2015 I started working for The
SMA Trust looking after the trusts social
media accounts, some of our fundraisers
and events. Its a comfort to know that the
fundraisers I support are raising money to find
a cure and treatments for SMA to help stop
other families going through what mine did.

Leeds 10k Run 10th July


Places still available!
Take in the sights of Leeds city centre and
join thousands of runners of all abilities in
this very popular, largely flat and fast course.

Great North Run


11th September Places filled
We have now filled the 5 places available
to run in one of the worlds most popular
and biggest half marathons!

London to Paris Bike Ride


14th -18th September
Places still available!

The Cotswold Way Walk


25th & 26th June
Walk 50 miles through the night from
Painswick to Chipping Campden,
enjoying some of Britains most beautiful
landscapes while watching the sun rise.
50 miles too much? 20 mile and 10 mile
options available on Sunday 26th June!

We are looking for keen fundraisers to cycle


from London to Paris on one of the best
cycling routes in Europe. Through beautiful
English villages and into stunning rural
France youll pass historical landmarks
and famous battlefields from World War I.

Mount Kilimanjaro Trek


9th to 19th March 2017
Places still available!

Virgin London Marathon


24th April Places filled

The challenge of a lifetime. Mount


Kilimanjaro The Roof of Africa.
Our 7-day Machame Route offers time for
acclimatisation resulting in an extremely
high level of summit-success.

We have 3 runners training & raising funds


for SMA research in this the most iconic
of all UK runs. Let us know if you would
be interested in a place next year!

For more details & how to


sign up visit www.smatrust.org
and get involved!

ACTIVITIES

UPDATE

Continuing to support
ground-breaking research
and clinical trial initiatives

Joanna Mitchell, Chief Executive


The first UK SMA Research Consortium
is now up and running. It has taken time
and hard work from many people to get
this project under way but I feel confident
that its now set to deliver great things
and look forward to the first major progress
meeting in June. Im also delighted with
what has been achieved through our
support of SMA REACH UK. We funded
the original project from the beginning
and have been thrilled with what has been
achieved, resulting in a truly impressive
international patient cohort, which will
now be further expanded/consolidated,
as well as including Type 1 patients.
On the international front, we continue
our regular dialogue with the main
pharmaceutical companies involved in drug

development and are working with


them on several initiatives, again with
the emphasis on ensuring that patients
are at the forefront of planning both clinical
trials and future access to new treatments.
Several current trials are showing
encouraging results, but these are more
about stabilisation and improvement than
cure and its important that we maintain
and build on the current momentum.
All our income comes from voluntary
donations so fundraising is ever more
important as we increase our expenditure
on research and related activities. The
Muscle Power Dinner at The Globe last
October was a spectacular evening, raising
over 100,000, and we were so grateful to
Tessa Rice, Tim Sheffield, their committee

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

NCDN MEETING FEB 201


6

them and Pledge a Pint in sponsorship,


by donating the cost of a drink at the pub.
At their annual Summer Party they are
planning a silent auction in support of
The SMA Trust, and later this year there
will be more cake, craft, and card sales,
a Christmas bazaar, quiz event, and
a charity poker tournament, with all
proceeds going to The SMA Trust.

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

and other trustees for their help in making


this event so successful.
Our regional fundraising teams continue
to be as active as ever and weve been
thrilled to welcome several new teams on
board, as well as hugely grateful, as always,
to long-standing supporters such as Team
David who organised the amazing lunch
with Matt Davies, raising over 80,000.
More than ever, I am grateful for the
commitment of staff, the wisdom of
trustees, the brilliance of scientists, the
enthusiasm of volunteers and the support
of everyone who is helping to make all
these breakthroughs possible.

Theres a lot more to be done.


Lets do it together!

Team NEWS

Hugo van Vredenburch


New Chair of the Trustees

In November 2015 Hugo


van Vredenburch was
announced as our
new Chair. Hugo
was formerly CEO
of TMF Group,
where he remains
as a Non-Executive
Director. Prior to that,
he spent 13 years with
Goldman Sachs. Hugo takes over
from Mark Dearlove, who is still a Trustee
but whose relocation to Japan made
it impossible for him to remain as Chair.

Tim Wraith

Trusts & Partnerships Fundraiser


In January we said hello
to a new team member
taking the place of
Ginny Cullen as
Trusts & Partnership
Fundraiser. Tim
previously worked
for Helen & Douglas
House heading up their
Trust Fundraising and brings
to The SMA Trust a wealth of experience
in this area. Tims role will involve increasing
income from grant making trusts, major
gifts and the corporate world.
7

FURTHER

INFORMATION

How can you help?


You can make a regular or one-off donation to The SMA Trust
by completing the form below or online at www.smatrust.org/donate
Take part in one of our Challenge Events or think up one of your own.
Run, walk, cycle, bake, dance or wash cars to raise funds for SMA research!
For more inspiration or help contact the fundraising team.
Volunteer we are always looking for help, either here in the office, remotely
or at our events throughout the year. We need local ambassadors too. If you
think you can help please contact info@smatrust.org or call 01789 801155.
Follow us on Facebook.com/smatrust or Twitter.com/smatrust
to keep in touch.

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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Registered Charity Number: 1097765

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.

I WOULD LIKE TO MAKE A

REGUL AR GIF T OR DONATION


You can make a regular or one-off donation to The SMA Trust online at www.smatrust.org. Alternatively, complete
this form and return it to us at the address below.

Your Details
Title:

First Name:

Last Name:

Make a regular gift

Make a donation
I would like to make a one off donation
to The SMA Trust of

I would like to make a regular gift of

Address:

I have enclosed a cheque made payable

to The SMA Trust

Starting on
and the same sum on the same day monthly
Please set up a standing order with your bank to:

Postcode:
Telephone Number:

Lloyds TSB, Stratford upon Avon


(Sort Code 30-98-26)
The SMA Trust
(Account No. 02628431)

Mobile:

Signature:

Email:

Date:

Gift Aid
Gift Aid means that for every pound you give,
we receive an extra 25p from the Inland
Revenue, helping your gift go even further.
 es I want all donations I have made
Y
since 6th April 2008, and all donations
I make in the future, to be eligible for
Gift Aid. Please tick the box above.

Please return this form to:


The SMA Trust 1c Atherstone Barns, Atherstone on Stour, Stratford-upon-Avon, Warwickshire CV37 8NE

Thank you for your support

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