ANNUAL REVIEW 2019 January - December 2019 www.swindondownsgroup.org.uk - Swindon Down's Syndrome Group
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ANNUAL
REVIEW 2019
January - December 2019
www.swindondownsgroup.org.uk
1
ANNUAL
REVIEW 2019
Families are what make the world a fun place to be.
They make us laugh, they make us cry, they give us
opportunities and they are by our side when we
need them.
We are a family.
Actually, we are many families, all volunteering our time and
experience as parents, carers and siblings to make life that
bit more fun and ensure our family with Down’s have all the
opportunities and support they need from birth to old age.
As a volunteer-family led charity we have seen it all - from
newborns to adults and beyond - and can positively say that
where there is a desire to be better, to have all the same
opportunities as everyone else it can not only be achieved
but surpassed.
We are proud of what we offer to our members and we are
equally proud to say that through the hard-work and energy
of our family, we have had another outstanding year.
With that we would like to offer our thanks to everyone
who has helped and supported our Group, through
membership, donations or volunteering - you’ve helped us to
achieve more than we could imagine.
04 | Message from the Chair
05 | Our achievements
25 | Thank yous
24 | Fundraising
30 | Governance
31 | Future
2 3
MESSAGE FROM OUR ACHIEVEMENTS
THE CHAIR
We had many achievements in 2019, here are some
of the moments that made our year:
This year was all about the
fundraising and boy did we all deliver!
£23,522 was received by the Group through
fundraising in 2019
We’ve been really fortunate over the past voting and supporting us. It was a huge ask to get people to
vote everyday but so many people got behind us and we
114 families now receive regular information and
have access to our support
£905
couple of years to have received some
phenomenal amounts of money through are extremely grateful.
was raised through voluntary
grants. As you can imagine there are lots of Every year we are fortunate to be supported by local membership donations
worthwhile causes like ourselves trying to businesses and organisations. We were delighted to be
27
compete for the same pots of money meaning selected as The Brunel’s Charity of the Year. We must say a
educational professionals attended our
it’s getting harder to secure funding in this way. massive thank you to former Brunel employee Kerry Fry annual pre-school and primary training day
and Oscar for making this happen.
For us, as a Group, our mission this year was to fundraise
£1,298.16
for some of our bigger projects. In total we needed to raise So far the Brunel have held a Christmas craft fair, set
£30,000 to fund Speech and Language Therapy (SALT), our themselves cooking challenges, are learning to sign and have was raised from our jumble sales
Salamander Project and WorkFit. I’m pleased to say that we let us hold stalls selling Christmas cards and sweets and
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reached our target. they’ve got some fantastic ideas planned for 2020 and in
particular Down’s Awareness Week. New parent congratulations packs given out
We’ve been working hard so far this year applying for grants,
to new parents in 2019
developing fundraising tools and finding opportunities May I take this opportunity to thank everyone for their help
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to fundraise for the Group. This year we have received with fundraising this year, whether you shaved your head,
grants from Zurich Community Trust, Wiltshire Community waxed your chest, baked us cakes, helped at jumble sales or young people took part in our 12-week
Foundation and Persimmon Homes. stood and collected for us in the supermarkets. Thank you! drama programme
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At the start of the year we teamed up with Down’s Syndrome Our work simply couldn’t happen without our amazing
International’s #Lotsofsocks campaign to raise money for members and supporters. We had Paul Ashman ride from received a gift from Father Christmas or
WorkFit. It was so heart-warming to see the community Lands-End to John O’Groats, Clair and Carol Hill hold a Secret Santa at our Christmas Parties
come together wearing their #Lotsofsocks, so thank you lights switch-on in Ashton Keynes and Nicki Denver organise
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to everyone that sold socks, but more importantly raised ‘Dare to Bare’, to name just a few.
families accessed our Speech and Language
awareness of Down’s syndrome; it really was a lot of fun.
Finally, I would like to take this opportunity to thank our Therapy with the majority receiving SALT
on a weekly basis
With the help of local printer CATs Solutions and local design dedicated Trustees who work relentlessly week in and week
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student Anna Russell we produced our own Christmas cards out to ensure the Group can undertake its vital work, thank
young people became Fire crew on the
to raise money for Speech and Language Therapy. you all so much and let’s see what 2020 will bring. Salamander Fire Course provided by
As you’ll remember over the summer we asked for your Wiltshire & Dorset Fire and Rescue
help to be in with a chance of winning £100,000 from
Persimmon Homes. While we were a little disappointed
Kim West, Chairperson
to not have won, we couldn’t thank everyone enough for
Swindon Down’s Syndrome Group
4 5
HIGHLIGHTS
OF THE YEAR
Local panto
In January the Tiverton Players,
based in Gorse Hill, invited members
of our Group to watch their
pantomime, Jack and the Beanstalk.
Chiseldon coffee
mornings Openworks summer BBQ fun
Amanda Yates and her family Courageous family members, friends and supporters waxed and shaved
have started a regular coffee various parts of their bodies in November in a bid to raising funds for Each year the Zurich Community Jon Davies, one of the organisers of
morning at the Memorial Hall in our Salamander project. Money is still coming in but is expected to be Foundation get proposed challenges the family BBQ said, “It was a great
Chiseldon. The coffee mornings over £3000. A massive thank you to everyone who took part and to by local charities and we were privilege to spend time with your
take place once a month, on a
Friday from 10am until midday.
Nicki for organising the event. delighted when they picked to host us
a Summer barbeque!
members on the day and to get
to know more about the amazing Our Reds take
What a wonderful day we had.
The sun shone and our families got
work that your Group does. The
opportunity to have a summer BBQ on Boys in Blue
and play games in the sunshine with
together to enjoy games and food some wonderful people was far too Wiltshire Police put their
provided by the team. good of an opportunity to turn down. reputation on the line to take
on the Swindon DSActive
football team in a ‘friendly’
match at Wiltshire Police HQ.
Well done Holly! Talking PANTS
fund our trip We held an evening
to the pantomime Downtime Holly Sullivan returned earlier
in the year from the fifth
Pedal power
specifically to talk PANTS!
Thanks to Kids Days Out we have
Our self-published magazine
Down’s syndrome European
Swimming Championships in
Xmas collections We invited members
aged eight and over to
Downtime is now in it’s third Over the summer Caroline We were very fortunate over join us to learn how to
been able to fund this year’s trip to Sardinia. As part of the Great keep themselves safe.
year of production. We are very Lane taught six of our young the Christmas period to be
the pantomime in Bristol. Kids Days Britain team Holly won three
fortunate to have had some people how to ride a bike. Now able to fundraise in the Brunel We learnt that what’s in
Out is used by families, grandparents,
silver medals in the 200m she shares her top tips to get your PANTS are private. We learnt
schools, groups, people with disabilities brilliant stories shared with us and at Sainsbury’s Bridgemead.
and many more to find local days out
freestyle, 100m freestyle and your child cycling. the underwear rule and had the
by our amazing members. Thank you to every who helped.
to enjoy with the kids. 100m medley relays. chance to colour our own PANTS!
6 7
SUPPORTING Stay
NEW PARENTS & p lay
coffee mornings
BY AMANDA AGER
Our support for new parents has gone from In March 2019 we started running bi-
strength-to-strength. monthly stay and play coffee mornings. We
are a small, friendly group, for families with
BY MICHELLE JAMES
children aged 0-7 and their siblings.
The emphasis is on supporting each other,
This time last year I was writing sharing ideas, and chatting over a cup of coffee,
about all the new babies we had while the children have fun and play.
welcomed to the group. At our
last coffee morning I handed out Initially these were held at the Churchill, in Royal
three of our one year milestone Wootton Bassett. We were very grateful to the
packs. It has been a pleasure manager of the Churchill, Anna, and all her staff,
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to see them grow over the last for supporting us. They were all so welcoming
twelve months. to our group, and accommodating of our needs.
However, due to the Churchill’s refurbishment at
With the help of Jodie and
the end of 2019 we needed to find a new venue.
Amanda, we have launched a FAMILIES
closed Facebook group for new WITH CHILDREN The coffee mornings are now held at the
parents as well as re-launching the Nursery of Narnia in Stratton. This fantastic
UNDER 7 YEARS
new parents coffee mornings.
o ffe e m o rn in g s a ll ow nursery have allowed us to use their facilities
“Our c
OLD which include a sensory room as well as outside
seek
Together, these allow new parents to
chat about their little ones successes
re n ts to c h a t a n d space. The children can play with the toys whilst
but also allows them to seek out pa the parents enjoy a cup of tea and a catch up.
advice and support for those bumps
e a n d s u p p o rt fo r those Again, we are hugely grateful to the Nursery
in the road. advic of Narnia for supporting us. They even invited
Now that the coffee mornings are
b u m p s in t he road” our group members to their firework display in
November, and to their Christmas Grotto.
established we are using them to Next year I will instead be able to
signpost different services as well as reflect on my new role as the groups As a team, Michelle, Cailey, Jodie and I have been
doing some fun interactive sessions too. Primary Age Parent Contact. When it is going well, it is great but Finally, we want to build working hard to bring the 0-7s coffee mornings
who do you turn to when things are on the success of the together. They have been well attended and it
This will be the last report that I The transition into school can going quite so well? training days and work has been a great getting to know everyone. We
write as the new parent contact for be a very daunting one for many with our primary school
By the time of the AGM, Cailey and have had lots of new parents joining us and it has
the group. Josh is almost 8 and it of our parents and dealing with to support them with
I will have launched a coffee and been a pleasure to welcome them to the group.
seems the right time to hand the reins ECHP and school applications can helping our children to
catch up for primary school parents We now hold the group on a monthly basis.
on to someone new – Amanda Ager be overwhelming. There is then learn and flourish in a
will be taking over the role and as the prospect of teacher and TA as well as a closed Facebook group mainstream setting. I The group have had lots of ideas for activities
much as I will miss cuddles with the relationships as well as number and specifically for this age range. We think it is going to be a they would like to do this year and we are
new babies, I know the role will be in phonics skills to get to grips with for will also be re-launching the school busy but exciting twelve looking forward to putting these into practice
very capable hands. both parents and children! holiday soft play sessions. months! and continuing to watch the group grow!‘
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SPEECH AND Speech Therapy
LANGUAGE A parent’s
THERAPY perspective
“Life is so much
Amanda shares how speech and language
therapy has helped her daughter Lily.
easier for her now
Regular Speech and Language te
she can communica
Lily was a very smiley baby, enjoyed describing what I’m doing to increase
interacting with others and seemed Lily’s vocabulary. Giving her choices
Therapy gives our young people
what she wants”
keen to communicate. However for a such as ‘do you want the blue ball or
long time she was unable to speak. yellow ball?’, and even helping her to
the opportunity to develop their During Lily’s sessions at Springboard
start ‘reading’ by matching simple words
to photos.
speech and comprehension skills. Opportunity Group in Chippenham,
and Portage, we were introduced to Since Lily has been seeing Erica I
Erica Ford, Specialist Speech
For all of us, being able to communicate is a using Makaton. Lily slowly started using a have noticed huge improvements in
and Language Therapist
fundamental part of our ability to be part of couple of signs, waving ‘hello’ and signing Lily’s speech and understanding. Erica
shares an overview of 2019
our communities, workplaces and families.. ‘food.’ At Springboard she really enjoyed is so knowledgeable about Down’s
with us:
singing nursery rhymes and signing along. syndrome and I feel very thankful to
After a long time of doing this at home, the Swindon Down’s Syndrome Group In 2019 the service was
We have seen Speech and Language
she gradually started to copy some of that they provide this service. It has accessed by 20 families
Therapy transform the lives and
the signs, singing the words. been invaluable. with young people’s ages
prospects of our young people. As a
Lily sees her NHS Speech and This improvement in Lily’s speech ranging from 34 months to
charity we pride ourselves on being
Language Therapist approximately skills have had a huge effect on her 23 years. I currently run a
able to offer this service completely
once per term. She has been brilliant in life. Other children at nursery find mixture of group sessions
free of charge to our parents as we
helping Lily with swallowing problems it easier to understand her, so she and individual sessions for
want to ensure that it is accessible to all
and advising how to help Lily’s speech is more able to play with them and treatment or advice.
20
families and that nobody is excluded on
grounds of income. develop. We were so grateful for the form friendships. She used to get We’ve had the flexibility this
help Lily was receiving, but wished she very frustrated because no one could year to adapt the groups to
We can only continue to provide this
could have more. understand what she was saying. suit the young people and
FAMILIES service if we are able to raise sufficient
funds. 2019 saw us heavily fundraise for When we found out the Swindon Lily is going from strength-to-strength. their needs.
ACCESSED SPEECH this project raising over £4,403.52 from Down’s Syndrome Group provide She can now speak in sentences, telling
I feel this year has been
& LANGUAGE fundraising alone. regular speech therapy we enrolled Lily. us what she wants for breakfast or
successful for the parents and
THERAPY Lily really enjoys her sessions with Erica
which episode of Mr Tumble she wants
We’d like to thank Persimmon Homes the young people and thank
to watch! One of the best moments
for giving us £5,000 and to the National the Group’s therapist. She has given us you to all the fundraisers
recently was when I was putting her to
Lottery for awarding us a grant of so much useful advice. Things that were who continue to make these
bed, and she suddenly gave me a big
£10,000 to support the project in 2020. easy to do, such as having Lily with me groups possible.
hug said ‘love you Mummy.’
when I’m doing the housework, and
10 11
KEEPING FIT
AND ACTIVE
Leading a healthy active life is important and
that’s why we offer weekly tennis sessions,
Swindon DSActive Tennis
fortnightly swimming and term-time football. by John Stow
Delta Tennis Centre hosts our weekly
DSActive tennis session on Sunday
Swindon DSActive Football New taster afternoons. This year we sadly had
to say farewell to coach Alan, who
sessions
by Jo Messenger
has decided to retire due to ongoing
What makes you smile? The health issues. Alan built up the sessions
DSActive football team makes me by John Stow over the past five years and had a
smile. Silly you may think, but unless great relationship with each of our
During the year we have also been
you’ve been to one of the sessions players. However, we are thankful to
able to offer some ad hoc sessions.
you won’t understand why. Delta for quickly providing us with a
In August, Swindon Harriers kindly
replacement coach, Haydn.
Our team comprises of a wide range hosted an afternoon of athletics.
of ages and skills, but they are a team Those who attended were Since September, Haydn has been
and they support each other. Our introduced to all disciplines of getting to know the players and their
team are friends who enjoy the game athletics, namely running, throwing Swimming playing levels. He has settled in well
while keeping fit and exercising. and long jump. We have also been by John Stow and is working hard with the players
guests of Swindon Shock Wheelchair Our fortnightly swimming sessions to improve their basic groundstrokes.
This year saw one of our greatest of our players, who showed respect
Basketball club on three occasions. at Thamesdown Hydrotherapy Pool In November, Delta hosted an LTA
moments. In June some of our team and sportsmanship throughout the
These sessions were a mixture of have continued to run throughout the Learning Disability camp which
travelled to Birmingham to take tournament. They played alongside
basketball and wheelchair basketball year. Although attendance has been allowed some of our players to mix
part in the DSActive National the other player’s as if they were
and concentrated on basic skills lower than previous years the core with those from other DSActive
Festival against many other teams best friends. It was fantastic to watch.
such as dribbling, shooting and, group of attendees continue to benefit sessions further afield from Swindon.
from all over the country. Our A truly amazing day. I’m looking
of course, chair control. Some of from both the structured teaching, These camps are just one way that
team joined with players from Bristol forward to this year’s tournament.
our parents also gave it a try and tailored to the individual, and also the our players can access friendly, or
and Cambridge to form the M4
Football helps our young people in soon appreciated how difficult it is fun aspect of spending pool time with more structured, competition during
Allstars team.
many ways. Alongside the exercise to master. We continue to look at peers and siblings. These sessions are the year. In the latter, Lane recently
After winning our group we went on there is communication, friendship, different sporting opportunities for a great way of introducing youngsters represented the Group (and Special
to win the semi-finals and eventually sharing and sportsmanship. Swindon our members and hope to organise to the water in a safe and warm Olympics Swindon) at the National
became runners up against Charlton DSActive Football does all of this some cricket sessions in 2020. environment. Thanks go to our disability LD Championships in Sunderland,
(who have dominated the festival and more. It gives the players a sense swimming coach, Vicky Hunt, and Neil returning with two silver medals and
for some years.) We are so proud of belonging. and the team at the Pool. the Sportsmanship Award.
12 13
SALAMANDER FAMILY DAYS
FIRE COURSE OUT & DISCO’S
The best 5-day experience you can We know how important family time is and
ask for. Salamander can change lives, that’s why we try to organise plenty of
I know it changed mine. family trips and events.
Written by Jo Messenger
t h e y o u ng p eople
We never push hings they
into doing t le w it h , t h ey
rt a b
are not comfo es when In 2019 we were lucky to In July we held our
selv summer family disco at The
do that them ir friends do it.
be invited back by Swindon
Pheonix Rotary to join Moonrakers. It was great to
they see the
them on their barge, The see the dance floor full from
Salamander is an intensive and A great day is
Rebecca for a trip along the beginning to end.
demanding course and every car cutting day.
Kennet and Avon Canal.
moment is filled with pride and The pleasure In September families from
joy. From taking the first steps of creating a large cut with the The Firefighters have been over So you see, it’s not all hoses and This was not just a pleasure the Group enjoyed a day
up a ladder, to abseiling down the huge cutters on a scrap car is so there many times, so they knew ladders, but that’s just as fantastic. trip, our group of five young out at Chessington World of
tower, from stepping into a dark satisfying. It is now enjoyed by that a great game is putting your Holding the hose and firing the men and one young lady Adventure. What’s great is
room to stepping into a dark room Immy as much as me! head through the water in the water high into the sky and maybe at were expected to work for there was something for all
with smoke in it. Everyone gets to chop up a bit of waterfall. Yes, the young people an unsuspecting passer-by. Climbing a their passage. With each of ages and not to mentioned
couldn’t wait to do this and many ladder and getting to the top of the our young people all having we were blessed with a
From day one the teams forge car and the delight is seen by huge
of them more than once. What a building and looking across the yard. a chance to steer the barge beautiful sunny day.
friendships that last forever smiles as you hear the crunch of
blast it was. They’re all mad. It’s all such a great experience. and be captain - it really was a
amongst their friends as well as the the car snapping under the large
great day.
firefighters. This is important on jaws of the cutters.
We then had to all leap in and There is nothing that I can say that
the course as team work is part of Of course water rescue is Nicky’s swim back. Some went in forwards, will ever come close to the feeling
every activity they take part in. favourite day and this year was a some went in backwards (some I get on those five days. A small
Now those of you that have little different to the past years as of us were misled into going in achievement, a huge smile, a small
followed my blogs over the years, we headed out to Coate Water backwards... no names Mark!) and step up a ladder or a large leap of
you will know that car cutting is my only to find the weed had taken someone did a somersault... because faith as they abseil down the tower.
all-time favourite thing. over our spot, so off to Buscot he could! All had an incredible time Every moment is worth a thousand
Weir we headed. in the water including Nicky! pictures... we have those as well!
14 15
YOUTH CLUB NEW AGM
& OPEN DAY
Youth club is specifically for our teenage
and adult members and takes place on a
fortnightly basis at Toothill Farmhouse.
We started Youth Club over
five years ago back in February
2014. Five years on I’m pleased
to say that it’s as busy and as We held our very first open It was lovely to see so many of
fun-filled as ever. day at the end of February at our members and their families
MP, Justin Tomlinson’s offices come along and find out what we
We are very fortunate to have a as a group have been up to and
at the Customer Service Hub
venue that has so much to offer an opportunity for us to share
at the Orbital Retail Park.
our young people and over the last what we have planned for 2019.
twelve months the farmhouse itself With the offer of a free ‘cuppa’
has seen some new additions and and delicious cake we hoped it Swindon SEND Families Voice and
improvements. would entice our members to Swindon Interactive Arts joined
come along - and it did! Mandy us to share how they can provide
Our young people are never short McAlpine and Marina Billinge- services and support to our
of things to do. They have table piece of cotton wool is teased out on It’s safe to say our youth club group Jones kindly provided the cakes members.
football, disco room, basketball hoop, the ground. A flint is held close to the like their food. As well as enjoying for us all to enjoy. We also used the event to launch
an abundance of board games plus wool and stroked firmly with a file toasted marshmallows by the open the sale of #Lotsofsocks!
Playstation, Wii and Xbox to play on. to make sparks that ignite the wool. fire we also headed to the Crown Inn
Youth club is open to those aged Dry leaves and twigs are then added at Stratton for a meal.
thirteen and over. Over the last year to make the fire. This is followed
As ever we never miss an opportunity
we have seen new faces join our by a game of hide and seek in the
regulars, many who have been coming forest and involved plenty of running
to dress. At Halloween fancy dress
is optional but one unlucky person Community
offices
since it began. around, laughing and screaming.
usually ends up getting wrapped in
It is still very much a tradition now The final activity is a team event - toilet roll for one of the games. As an
every summer to organise a trip to they had to build a shelter using logs, extra treat Mandy McAlpine made us We need to say thank you to MP,
the Cotswold Forest School. The branches and dried grass. They then some delicious cakes. Justin Tomlinson for letting us use his
school is run by Johno and his team. huddled inside while Johno threw community office to hold many of
We end each year with a Christmas
a bucket of water over it to test its our Trustee meetings and information
Each year our young people learn meal at the Crown Inn too.
resistance. Most of the water stayed evenings throughout 2019.
how to light a fire using a flint and
out to everyone’s relief!
striker (matches not allowed!). A small
16 17
CHRISTMAS PRIMARY &
CELEBRATIONS PRE-SCHOOL
TRAINING DAYS
It’s not Christmas without We offer dedicated training days to support
a party, right? That’s what educational professionals who work closely with a
we believe. Our Christmas child with Down’s syndrome - something which is
parties are one of our not currently provided by our Local Authority.
favourite events of the year.
In 2018 we changed the format of
our Christmas party. We held a
children’s Christmas party for our
younger members, up to the age of
11. Our older members enjoyed a
27
DELEGATES
Christmas Disco at the Moonrakers. ATTENDED OUR
The format worked really well and TRAINING
we adopted it again for this year.
DAY
First up this year was the party
for our little ones. Andy from the
fantastic Razamatazz provided the
entertainment. From brilliant magic Children with Down’s syndrome are The day was designed to give those
tricks to games and dancing it was a all unique individuals, however we attending a broad overview of the
fun-filled afternoon. Even the Mums know they share a common learning learning profile of children with
and Dads were up dancing! profile. This means we have a good Down’s syndrome and how best to
understanding of how to support support their learning needs.
No party is complete without a
a pupil with Down’s syndrome
Christmas
visit from Father Christmas. All the We ensure the cost of this day
children and their siblings received a in a learning setting and how to
is very reasonable as it makes it
maximise their potential to acquire
raffle prizes
present from the Group.
possible for schools to send as
new skills and be included in the
The following week was our many members of staff that may
classroom with their peers.
Christmas Disco. It’s safe to say the Thank you to Zurich Community be involved in the education of our
dance floor was full from the time Foundation for providing us with This year our training day, led by children, ensuring that our children
the party started until it ended. There three beautiful hampers that we Gillian Bird, Services Director at The receive the best possible chance
was a brief interval while we gave raffled off at our Christmas parties. Down’s Syndrome Association was of succeeding in their mainstream
everyone presents from Secret Santa. attended by 27 delegates. placement.
18 19SUPPORTING TRAINING &
ADULTS INTO THE INFORMATION
WORLD OF WORK
We are passionate about ensuring our young A few years ago we used to provide information
people have the opportunity to find ways in evenings on a regular basis. This year we decided Wills & Trusts
to work whether that’s paid employment, to reintroduce these, offering a Wills & Trusts information
work experience or traineeships. evening and Ageing and Dementia Training. evening
We understand how planning
for your child’s financial
Since 2015, the partnership between who have Down’s syndrome so future can be a big concern
the DSA’s WorkFit programme and that they can be supported in the so in May we provided a free
the Swindon Down’s Syndrome workplace. Work can be anything Steph Kynman recently information evening on how
Support Group has been providing from paid jobs, volunteering roles, celebrated three years you can make sure your child
a tailored employment programme work experience or traineeships. employment at the Village is provided for when you’re
for people with Down’s syndrome Hotel in Swindon. no longer around.
12
in Swindon and Wiltshire and we Earlier this year Jonathan Grew
Steph enrolled in the WorkFit The evening was delivered
are thrilled to announce that the resigned as our Employment Liaison
programme in July 2016. Steph by David Blackler, and his
partnership will be continuing into Officer. Our new WorkFit Liaison began with a six-week work DELEGATES colleagues from DJS Wealth
2020 and beyond. Officer will begin in post next trial with the Village Hotel and ATTENDED THE
summer (2020), providing local on successful completion was Advisers who are a Practice
WorkFit brings together employers knowledge and on the spot support taken on as a paid employee in DEMENTIA Partner of St. James’s Place.
and jobseekers who have Down’s
syndrome. It is a tailored service
to employers and candidates the September. As a Group we In March we hosted a free
one-day course for local health
TRAINING David discussed why a Will
seeking work. recognise the importance of
dedicated to training employers supporting people with Down’s and social care staff involved in is sometimes not enough
about the learning profile of people We are looking forward to engaging syndrome to gain work experience providing for the care needs of when you have a disabled or
with local business throughout the and progress into employment. adults with Down’s syndrome as It is important to understand
vulnerable son or daughter.
year and will be welcoming anyone well as parents and carers from dementia to be able to help those
Steph works as a Commis Chef in The event was one of our best
who want to know more to a free the Group. living with the condition.
the kitchen preparing the vegetables attended information evenings
9
breakfast meeting in October. It’s
and preparing for Sunday lunches. Dementia is the term used to The aim of the course was to with over 20 families attending
the perfect opportunity to ask Steph thoroughly loves her work
questions and chat to other local describe a set of symptoms that may provide those supporting adults with
and the people she works with. We followed this evening up
CANDIDATES businesses. This event was originally In the afternoons Steph provides include memory loss and difficulties Down's syndrome to understand the
with a drop-in clinic in October.
CURRENTLY scheduled for 27 February 2020, support in the bar area and cafe. with thinking, problem-solving or importance of recognising possible
Thank you to David and his
ENROLED IN however the decision has been language. The changes are often small signs. The course itself was really well
As a Group we are really proud of team for supporting the Group
WORKFIT taken to defer until October so that to start with, but for someone with received and we thank Julian Hallet,
we can introduce our new WorkFit what Steph has achieved. Well done and sharing your knowledge.
dementia they can become severe Services Development Manager at
Liaison Officer. Steph!
enough to affect daily life. the DSA for kindly delivering it.
20 2112
DRAMA COURSE YOUNG PEOPLE
PERFORMED IN OUR IT’S ALL THANKS TO
DRAMA
& PRODUCTION PROJECT YOU, OUR SUPPORTERS
We are so grateful to everyone who has
Working with Rubber Chicken Inc we were I really like drama because it is fun,
able to offer our members the chance to
and I can hang out with my friends.
My favourite part was being a
supported us over the past year.
mermaid with my sister because I We owe a huge OUR SUPPORTERS ASDA Walmart
access a 12-week drama course. love mermaids and rainbow things. thank you to every Riz Sheik Harvester
Clare Stow
Erica Ford
My other favourite part is hanging Marina Billinge-Jones Morris Owen Copy Color
single person,
Diana Rowlands APD Communications Nutmeg Design
out with my sister because I love group or business
Written by Kim West Cherylin Hempleman Royal Mail Trowbridge Sharlee Denver
her. I also like when we make funny that has helped McAlpine Family Royal Mail Devizes Dan Sweeney
The Swindon Down’s Syndrome This year’s show was another jokes because they make me laugh us to support our SG Pierce Devizes School Mandy & Jason Kelham
Group run a 12-week drama stunning performance with a lot. I really like all of the members young people with Thomas Price Fairfield College Beth & Paul Hinic
course with Sue Welsh and her a take on Love Island. Our of staff because they support me. Down’s syndrome. In The Crown Inn Stratton Fire and Rescue Salisbury Will Price
Rotary Swindon North Avon (Rubber) Melksham Danny Hawkins
team at Rubber Chicken Inc. For young people made everyone particular we’d like to
Written by Sophie West MR Read Phil King Simon Watts
the first time this year we were very proud, my jaws hurt so thank the following Mary Gray The Dolphin Pub Martin Maynard
able to open up the course to much with the laughter it was a supporters. Route 8 Barbers Tesco Mark McAlpine
those over 25. fantastic evening. Amanda Yates Aster Jason Cobb
Openworks Mandy McAlpine and family Jon Russell-Pierce
The course runs from early 2020 will be the tenth OUR PATRONS
Zurich Community Trust Syree Smith Gerry Watkins
Cliff Puffett
March, for 12 weeks with a live year we have run Daniel Eaton Carol Hand Charlotte Venter
Julie Thomas
production at the Steam Museum the course and I am Emma Parker Maria Buadromo Martin Kelly
in front of friends and family in informed by Sue it will OUR TRUSTEES M Platt Teresa Carey Sam Turner Silver Lining
Kim West Nationwide Isobel Fowler Tattoos
June. be extra special.
John Stow Wiltshire Police Emma & Alan Wood Red Dragon Tattoos
The project runs for one hour a Sam Harding Mercedes-Benz Kay Wingrove Jane Atkins, Asda Walmart
Cailey Whitcher Uplands School Justin Tomlinson MP 12th Dynasty Tattoos
week on a Monday evening and
Leslye Russell-Pierce Marlborough College DE Beckett Duke of Edinburgh pub
we invite siblings to take part Jo Messenger GWH Shalbourne Suite Douglas Simmons The Cutting Bar
too. The course is not only fun, Ian Tuckwell Down’s Syndrome International KidsDaysOut UK The Brunel
but it promotes self-esteem, Amanda Ager Wadworth Brewery Honda Tenpin
confidence, communication skills, Michael Billinge-Jones Rubber Chicken Clair & Carol Hill Sainsbury’s Brunel
self-expression, independence Nicki Denver DS Active The Sun Inn, Coate Marks & Spencer
Cirencester Primary School Co-op Old Town Wilkos
and enhances social skills for
Horizons College Paul Ashman Aqua -G
everyone involved. Jo Bowen Caroline Lane Kingsley Smythe
Swindon Phoenix Rotary Persimmon Homes Supercuts
Swindon Town Football Club Wilshire and Dorset Swindon Artists Forum
Dorcan Recreation Complex Fire and Rescue The Entertainer
Eastrop Infants School Cotswold Forest School Fay de neef
Southfield Juniors School Lauren & Simon Craige Marie Trafford
Lethbridge School Wiltshire Community Foundation Sam James
Crowdy’s Hill School CATs Solutions Marina Newby
OK4U Lush Retail Ltd Chloe Lee
Commonweal School The Brunel Swindon Emma Wakeford
Noremarsh Junior School PE Watkins Louise Lewis Madame’s
Snap Fitness Cirencester Sarah Tuck Beauty Shop
TD Williamson Sainsbury’s Bridgemead
22 23PAUL ASHMAN’S
FUNDRAISING
epic cycle
SUPPORTERS OUT IN FORCE AT
ASDA WALMART ride
CROWN INN
EYES DOWN
RAISES OVER
AT SUN INN
PUB BINGO £500 FOR US
At the end of July the Paul Ashman and his three team and the British Heart Foundation. The Crown Inn, Stratton have
Sun Inn, Coate raised mates, Kim, Andy and Jason, Paul added: “My sister has Down’s been regular supporters of the
a fantastic amount of cycled the epic journey from Syndrome and the group do Group for many years. This year
for the Group at their Lands End to John O’Groats. phenomenal work, it’s very close to has been no different.
monthly Rock and Roll my heart.”
It was touch and go whether Paul This year the local pub has raised
Bingo night. Along with the
would be able to complete the Paul’s efforts raised a fantastic money at their regular quiz nights,
bingo they held a raffle and
bike ride at all after suffering a nasty £1,162 for the our Group. Paul running raffles as well as selling
mini auction raising £793. Two
crash just a few weeks before the commented: “It was a lifelong socks and Christmas cards to help
lucky customers went home A team of volunteers from the Group
start of the challenge. experience and in turn raised lots raise funds.
with a share of £200 on the gave up their time to help shoppers
final full house too! A massive of money for two great charities.”
pack their bags and raise funds at ASDA Paul embarked on the ten-day
thank you to everyone who A huge well done and thank you to
Walmart in September. It was a fantastic opportunity cycle ride to raise funds for the
supported the event. Paul and his team.
to raise awareness of the work the Group do in the local Swindon Down’s Syndrome Group
community. Thank you to Jane, Community Champion
COLLECTION at ASDA Walmart for giving us this opportunity and to
everyone that volunteered - especially our young people.
RAISES OVER We raised an amazing £605.10.
£200 AT COOP ROUTE 8 MYLES TAKES ON THE CHALLENGE
ZURICH GRANT HELPS
GET US CLOSER TO OUR
BARBERS
DONATE
SWIMATHON 2019
On Sunday 14 April, Myles The Swimathon is a fun event organised
FUNDRAISING GOAL £150 Billinge-Jones swam 22 lengths to help local organisations raise the cash
at the North Swindon Rotary they need. Held on one day it gives a
Each year the Group applies for grants from Sylvester King and the team Swimathon. Myles raised £164 half team of swimmers the opportunity to
Thank you to the Co-op different charitable trusts and foundations to at Route 8 Barbers in North of which went to the Swindon Down’s gather sponsorship for an organisation,
for allowing the Group to support the work we do. We have been very Swindon kindly donated cause or charity they select.
Syndrome Group.
do a collection at your Old fortunate to have secured a grant of £6,000 from £150 to us in February this
Town store in September. the Zurich Community Foundation to help us get year. £1 from every cut they
It raised £267.66 for the ever closer to our fundraising target for Speech and did was donated to a host
Salamander Course in 2020. Language Therapy. of local charities. Thank you!
Thank you! To everyone who has made a donation to our Group this year. We really appreciate
you choosing to support us and the work we do as a charity.
24 25#LotsofSocks Staff from Dorcan
Recreation Complex wearing
Down’s
#LotsofSocks in the pool
Awareness
Week 2019
Written by Kim West
This year’s Down’s Awareness Week
was unlike any other for the Swindon
Down’s Syndrome Group. As a
Group we made the decision to join
Down’s Syndrome International’s
#LotsofSocks campaign. From a Wadworth Brewery Shire
personal perspective it was great to Horses Sam and Max doing
their bit for World Down’s
be involved with #LotsofSocks - it Syndrome Day
was really quite heart-warming. to
see the community come together
- and a lot of fun to sell the socks.
Thank you to everyone that sold
socks, raised money but more
Staff at The Crown Inn Stratton
importantly raised awareness of sold socks on behalf of the Group
Down’s syndrome.
We raised a total of £4,509.62 in Y outh Club step up their
game with #LotsofSocks
2019 and hope to better this again
in 2020. The money raised from
#LotsofSocks goes towards funding
our own WorkFit Liaison Officer. Wiltshire Police’s Vivian,
Jeremy and Luke at Devizes
School assembly
The lads at DSActive
Football show off their
socks while Oliver and
Frank keep up team spirits
Young European International
Queens supporting #LotsofSocks
ylo sporting
K
Marlborough College wore their odd socks on #LotsofSocks and acting
WDSD and sold #LotsofSocks on behalf of the Group as our cover photo for
Down’s Awareness Week
Staff at GWH wearing #LotsofSocks
26 27ASHTON KEYNES THE BRUNEL’S
XMAS LIGHTS CHARITY OF THE YEAR
In December Clair and Carol Hill organised at Christmas
lights switch-on in Ashton Keynes. Their aim was to use
the event to raise money for the Group’s Salamander
project which Clair’s son Leo has accessed.
PUBLIC VOTE
Clair and her mother-in-law Carol
had done a light switch-on before
“My advice for anyone
considering organising a
WINS GROUP
and thought it would be great way
to raise money for the group. It
fundraising event like this is
make sure you know rules
CASH PRIZE
started as a simple lights switch-on regarding fundraising - work Over the summer we asked
but later grew to having stalls and with the charity and they will help for votes in a bid to win a
a raffle. and support you along the way.” share of Persimmon Homes
Clair said, “We chose salamander The festivities started from 6pm Building Futures competition.
because my son loved it last year and featured a fantastic raffle, The Group were shortlisted from
and I know how much money the Santa’s grotto, home-made cake over 4,000 applications as finalists
Group have to raise to provide sale and craft stalls.. in the competition. A public vote
it. It’s an amazing opportunity for choosing the winners in each
the young adults to experience so Clair added, “We were so
pleased to have raised £1684.74. category. The team at The Brunel had It’s comforting to know that as Oscar
many skills. it happen. Rosemary and Martin for there
Our goal was £1000 and we heard about the excellent gets older the group will be able to
help and prizes they donated. Mandy, The winners were announced on
“We both enjoyed gathering prizes exceeded that. work we do for local children support him as his needs change.
Tracy, Jaquie, Jane and everyone who 8 October at a Gala dinner in York. We have made some great friends
and organising the stalls. I loved The Group walked away with a and their families from former
I’d need to thank Carol, Jim, Reg and supported us. Thank you to Cailey, John, through the group, who do a fantastic
how many people came to support cheque for £5,000. Brunel employee Kerry Fry.
Jaquie for letting us use their houses Kim and Nicki from the Group who have job at raising positive awareness
our event - it meant so much. Kerry’s son Oscar, has Down’s
and everything they all done to make supported me through the event. about Down’s syndrome in Swindon.”
“While we weren’t the winners of syndrome and Kerry and her
the big cash prizes, £5,000 is going family have been supported by Jane Stewart, Centre Manager at The
to make a massive difference to the the group. Brunel said: “Oscar was born just as
Group. We will be using the money I started at the centre and it’s been
CHRISTMAS CARDS to help fund our biggest project,
speech and language therapy.”
Cailey Whitcher, one of the trustees
of the group, was delighted with the
wonderful to follow his progress over
the years. When we heard about
news. “This was such a lovely surprise. the midwife video that Kerry had
SALES RAISE £421.50 Kim attended the dinner with our
Patron, Julie Thomas. There were
We feel very privileged that they
chose us as their Charity of the Year.
helped with it was an easy decision to
choose Swindon Down’s Syndrome
Anna Russell a final Proceeds from the sale 96 charities represented and it was Group as our charity of the year.
Kerry said: “Swindon Down’s
year degree student, of the cards supported inspiring to see the work people Syndrome Group are a great resource “We have lots of fundraising activities
studying graphic design our Speech and Language are doing all over the country and for those who have Down’s syndrome planned, such as a craft fair in
at Swindon College won Therapy project. The cards the desire to help people and and their families. December and getting involved with
our Christmas card design were printed by local printer what can be achieved by working the Charity’s awareness campaign
competition. Anna Russell’s CATs Solutions. Greg Smith, together. “Oscar is benefitting tremendously #LotsofSocks for World Down’s
design was chosen as the Managing Director said, “It from the speech and language and Syndrome Day in March. There will be
A huge thank you to Persimmon I go along to the coffee mornings regular team lunch cooking challenges,
winning entry by the charity was a pleasure to be able to
Homes for funding projects that which gives me an opportunity to talk we’ll be learning sign language and
trustee’s. Anna’s design really support such a fantastic local
make such a difference to many to other parents who are in the same we’re even going to learn to sign so
impressed us. She took some charity who do such great situation.
traditional themes and added work, we hope the cards help peoples lives.” we can put on a carols performance
her own artistic twist. them raise lots of money”. in the centre at Christmas!”
28 29GOVERNANCE & THE FUTURE
MANAGEMENT
Our plans for 2020 onwards is to
continue on our mission to help people
Charity name: Swindon Down’s Syndrome Group with Down’s syndrome to have the same
Charity number: 1158449 opportunities as everyone else and raise
Principal office: 34 Periwinkle Close, Swindon SN2 2QH
awareness of Down’s syndrome in the
local community.
Over the next twelve months we have lots planned for the
Governing document Recruitment and appointment of trustees
Group. We will very much be focusing on fundraising again
Swindon Down’s Syndrome Group is constituted as a charitable The existing trustees are responsible for the recruitment of new
in 2020. It is getting harder and harder to compete for
incorporated organisation (CIO) registered with the Charity trustees. In appointing new trustees we seek people who are part
Commission. It is governed by a constitution last updated in 2018. of our local community. Potential trustees are invited to trustees’ grants against other worthwhile causes. We will continue to
meetings or to meet with the chairperson to learn more about the think of inventive ways to raise funds the projects we run
Charitable objects: charity’s aims and objectives. If all trustees agree they are proposed as
To relieve the charitable needs of people with down’s syndrome, and and actively encourage you to join us.
new trustees. New trustees are required to complete a DBS check
their families, helpers and carers in particular but not exclusively by and given a three month trial. This process allows due consideration
the provision of support and information and speech and language As a Group we will be looking at what provisions we offer
of the person’s eligibility, personal competence, specialist knowledge
therapy so that they are able to attain their full potential and to and skills. for those in the primary age bracket. We will be looking to
undertake any other charitable activities in connection with the relief hold more information evenings, as well as holding drop-in
of down’s syndrome in the SN postcode area (area of benefit). Public benefit coffee mornings to support parents and carers.
Activities: The trustees have paid due regard to the Charity Commission’s
We are a parent-led charity supporting people with down’s syndrome, guidance on public benefit in deciding what activities the charity In 2019 we revamped our school packs, making them more
their families, carers and all those with an interest in down’s syndrome should undertake. The trustees consider that they have acted in the
relevant and accessible for members. In 2020 we plan to
in Swindon and the surrounding area. We are an independent charity, public benefit.
develop our relationships with local schools to see how
affiliated to the national down’s syndrome association.
Financial review and reserves policy we can help further support them in educating our young
Organisation structure At 31 December 2019 the charity held total funds of £60,197, of people in a mainstream setting.
which £57,275 were restricted and £2,922 were unrestricted. The
The charity trustees are responsible for the general control and
charity has minimal overheads as it is run by volunteers and so it does Our training days still prove to be very successful and we
management of the charity. The trustees give their time freely and
not need to build up reserves. The restricted funds comprise:
receive no remuneration or other financial benefits. will be looking at running an additional training day for pre-
Speech school professionals as well as the primary training day.
The trustees meet together as a body monthly and are responsible for
Donations and grants to provide speech therapy £25,579
all decisions taken in relation to running the charity. The charity can
have a maximum of 10 trustees. Engaging our local community and raising awareness is
Salamander
Donations and grants to provide Salamander £6,571 an important part of what we do as a charity. We want
Trustee name Office Dates acted if not to strengthen our links with healthcare and educational
(if any) for whole year WorkFit
Donations and grants to support adults in the
professionals and work together to support our young people.
Kim West Chair world of work £4,449
While we haven’t yet managed to secure SALT for our
John Stow Vice Chair
Other smaller funds £20,676 adults aged 25 and over, we are still looking at how we can
Sam Harding Treasurer
Total restricted funds £57,275 achieve this.
Cailey Whitcher Secretary
We will once again be involved in the #LotsofSocks
Ian Tuckwell Vice Treasurer
Approved by the trustees and signed on its behalf by: campaign, selling socks in Swindon with all money coming
Michael Billinge-Jones
directly back to our Group. Again the money raised will be
Joanna Messenger going towards funding our WorkFit Liaison Officer.
Leslye Russell-Pierce
We have a lot planned for 2020 and we hope you will
Amanda Ager Kim West, Chairperson
Swindon Down’s Syndrome Group support us in achieving our goals.
Nicki Denver 03/19 – present
30 31The Swindon Down’s Syndrome Group is
a parent-led charity supporting people
with Down’s syndrome and their families
in Swindon and the surrounding area.
We are here to help people with Down’s
syndrome to have the same opportunities
as everyone else and raise awareness of
Down’s syndrome in the local community.
REGISTERED CHARITY
Swindon Down’s Syndrome Group is a UK registered
charity. Registered Office 34 Periwinkle Close
Swindon SN2 2QH.
Charity number: 1158449
Copyright ©2020 Swindon Down’s Syndrome Group.
Designed and produced by Cailey Whitcher www.nutmegdesign.co.uk
www.swindondownsgroup.org.uk
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