ANNUAL REVIEW 2021 January - December 2021
www.swindondownsgroup.org.uk
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ANNUAL REVIEW 2021
The Swindon Down’s Syndrome Group consists of many families, all volunteering our time and experience as parents and carers to make life that bit more fun and ensure our family with Down’s syndrome have all the opportunities and support they need from birth to old age.
We started as a small group of parents who met for coffee and provided each other with support. As time passed, more parents connected with the group and in 2003 we became a charity in our own right.
The Swindon Down’s Syndrome Group support people with Down’s syndrome in Swindon and the surrounding area including Fairford, Malmesbury, Hungerford, Pewsey, Marlborough, Hullavington, Chippenham, Devizes, Calne, Ashton Keynes, Cirencester, Aldbourne, Bromham, Melksham and Cheltenham.
We are a volunteer led charity, meaning everyone that has an active role in the Swindon Down’s Syndrome Group gives up their time because of their love of the group.
We are very fortunate to be supported by our fantastic trustees and volunteers.
04[| ] Message from the Chair
05[| ] Our achievements
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18[| ] Thank yous
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19[| ] Fundraising
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26[| ] Governance
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27[| ] Future
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MESSAGE FROM OUR CHAIR “A SENSE OF DÉJÀ VU”
I am writing this year’s report with a sense of déjà vu. We all hoped that 2020 would be a year that would never be repeated, but 2021 felt like we were reliving 2020 all over again.
While restrictions prohibited us from running many of our larger events, wherever and whenever we could we took the opportunity to continue to provide our regular activities and essential services like speech and language therapy.
2021 was by no means a quiet year for the Swindon Down’s Syndrome Group. We have been extremely busy fundraising and raising awareness in the community. We were delighted to be asked to be involved with the Reshaping Conversations project run by Swindon SEND Families Voice. The project was about “inspiring change through positive language” and educated professionals who support children with SEND to consider their choice of language.
As you can imagine fundraising has been a challenge once again. Covid has limited our opportunities to get back out into the community. We have been very fortunate to have been awarded grants from organisations such as The Wiltshire Community Foundation, Julia and Hans Trust, Persimmon Homes, The ASDA Foundation and Voluntary Action Swindon. Voluntary Action Swindon enabled us to make updates and modifications to make our speech room “Covid safe”; we replaced the carpet with laminate flooring, so it was easy to clean; we invested in new wipeable furniture, screens and installed a sanitising station for our members to use.
With a room fit for purpose we were able to return to face-to-face speech and language therapy. Due to the pandemic, we have had a significant rise in the number of members who are now accessing speech and language therapy. We now have 36 members accessing this service compared to 17 last year.
We are continuing to work hard to secure a grant to be able to achieve our goal of offering adult speech therapy.
In September, we welcomed Roy Perrett as the Swindon Down’s Syndrome Group’s WorkFit Liaison Officer. Roy has already hosted an information evening for our members and has hit the ground running, already enlisting one young person into employment and is in discussions with many more companies regarding placing more. Welcome aboard Roy!
When you look back at the year you realise just how much we have been involved in. Over the summer we took part in the Superhero Challenge, held an online “cook-along” with Zurich – making Victoria sponge cakes, supported the Swindon Rotary at their Christmas concert at Christchurch and got our singing voices warmed up with our rendition of Jingle Bells for our Christmas Singalong.
With no Christmas party again, we donned our elf hats and delivered over 120 Christmas boxes to our members, thanks to Swindon Children’s Scrapstore.
It is always heart-warming for us to see so many donations coming in to support our Group. We are extremely grateful to everyone that donates and raises money, especially now, when we appreciate that times are getting harder for everyone. So many members and their families have given up their time and skills to help us – so thank you!
My final thank you is to our dedicated trustees. They work hard week in and week out to ensure the Group can undertake its vital work as without them the Swindon Down’s Syndrome Group would not be as successful as it is today. So, thank you all.
Kim West, Chairperson Swindon Down’s Syndrome Group
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OUR ACHIEVEMENTS There was a lot to celebrate in 2021 and here are just a few of our achievements.
£11 547 , 134 £1 280 , £5 109.03 , £31 242.28 ,
was received by the Group through fundraising in 2021
families now receive regular information through our mailing list
was raised through voluntary membership donations
raised in donations and grants to support adults in the world of work
Raised through donations and grants to provide speech and language therapy
120 1 803 ,
Christmas boxes were delivered by our Trustees to all our members
Follow us on Facebook
36 483
members enrolled for Speech and Language Therapy with the majority receiving SALT on a weekly basis
online therapy sessions have been delivered through Mable Therapy.
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HIGHLIGHTS OF THE YEAR
We were invited by Swindon SEND Families Voice to be a part of their Reshaping Conversations project.
Many of our families have experienced poor use of language, their child is a “Down’s baby”, not a person, and new parents encouraged to consider their options because their baby may have Down’s syndrome.
We were extremely proud of parents Simon and Lauren from the Group stepping forward and sharing their personal experiences.
Supporting the Down’s Syndrome Bill
Dr Liam Fox MP introduced a Bill into Parliament which will enhance the lives of everyone with Down’s syndrome in the UK. The Swindon Down’s Syndrome Group are in support of the Bill and will be sharing updates on its progress.
Paralympian Ben Fox meets DSActive team
Paralympian, Ben Fox, who was part of the Wheelchair Basketball Team, joined our DSActive team to show us his amazing Bronze medal. The team got to ask questions about the Games this year. Thank you Ben for taking time out to come and see us and Swindon Town FC Community Foundation for organising.
Xmas treats delivered in place of party
After the success of 2020 where we delivered over 100 Christmas boxes to our members, we did the same this year in place of our Christmas parties. Unfortunately due to rising covid cases we decided it was still to soon to host a large event like this.
All our current members received a Santa sack. Thank you to the Swindon Children’s Scrapstore for putting these together for us and to our Trustees for delivering them across Swindon and Wiltshire.
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Sam wins award for spreading positivity
Sam has been keeping people smiling by dressing up each week for ‘Clap for Heroes’. Sam has now been nominated for his own ‘Unsung Hero in the Community’ award. Well done Sam! Great work and thanks for keeping everyone smiling!
Stay and play returns for our little ones
It was great to get back to meeting face-to-face again this year. We resumed our stay and play coffee mornings for our 0-7year olds which are hosted at Grange Leisure Centre in Stratton.
4 Kingdoms Christmas Event
The fantastic 4 Kingdoms in Newbury donated 12 adult and kids tickets to allow famillies from the Group to attend their Christmas Experience. It was a truly amazing day for everyone!
DSActive show off their skills at STFC
Our wonderful DSActive Football team were the stars of the day at Swindon Town FC against Bradford City showing off their amazing skills at half time.
Supporting others
Oliver, Zac and Michael put their craft skills to use to raise over £600 for Wiltshire Air Ambulance.
Zurich host ‘cook-along’
Earlier this year Zurich took on the challenge to provide an online cooking lesson for our members. During half term eight of our members took part in the cook along with Darren Lee from Zurich. Darren led the session and decided that everyone was going to make a Victoria sponge cake and what a great choice that was!
Todd and Martyn
In November award winning Todd Scanlon joined Friends of Old Town for a chat with Martyn Coles talking about why employers should take on people with learning disabilities.
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SUPPORTING NEW PARENTS
Within the New Parent Group you will find a wealth of knowledge, experience and an abundance of new friends.
We need to start by saying a huge thank you to Amanda Ager for her work as our dedicated New Parent Contact. Sadly, Amanda stepped down at the start of the year but is still very much a part of the Group. Amanda did a fantastic job supporting new families when they joined and arranging regular catch ups.
It’s been wonderful to meet all the new families that have joined the Group through the pandemic. The WhatsApp group has gone from strength to strength with messages posted most days.
So far I have presented to Wiltshire Portage about what the Swindon Down’s Syndrome Group can offer, with plans to tackle the Health Visitors next. We are all looking forward to having more social events where members of all ages can meet in the coming year.”
With at least half of our families with children under the age of five living in the Wiltshire area the Group made the decision to appoint two New Parent Contacts; one for Swindon and one for Wiltshire.
Hi, my name is Victoria and this epic small person is Verity! We knew before she was born that she had cardiac issues, and was teeny tiny and it was suspected that she had Down’s syndrome, but we only knew for sure when she popped out the emergency hatch four weeks premature. I’m now a new parent contact here to support other families.
The two Health Care Trusts that cover Swindon and Wiltshire operate every so slightly differently so having two parents who have experienced both made perfect sense. Jodie Morris now covers the Swindon area while Victoria Argue covers Wiltshire.
Victoria said, “Our wonderful ‘Stay and Play’ sessions have started up again, currently at Grange Leisure Centre in Stratton, Swindon. They allow us to use their soft play facilities which are ideal for our little ones, plus there is a coffee shop on site too.
Hello, I’m Jodie and this is my son Kylo who was diagnosed with Down’s syndrome at birth. We made contact with the Swindon Down’s Syndrome Group a few days after he was born and have had so much support and made some great friendships. Jump ahead a few years and I am now a new parent contact, supporting parents going through the same journey.
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YOUTH CLUB
Our Youth Club, which meets fortnightly, continued in virtual form for a large part of 2021.
School in South Cerney. Johno and his team treated us to an afternoon of fuel foraging, fire starting, shelter building, a game or two of hide and seek and the chance to enjoy a toasted marshmallow at the end of the day. We finished the day with a meal at The Crown Inn in Stratton.
Everyone enjoyed catching up with their friends and taking part in themed quizzes but couldn’t wait to meet again in person.
This finally became a reality in August and regular sessions at Toothill Farmhouse resumed the following month. The difference with these was that, to involve members unable to get there in person, we now include a short Zoom call for everyone to chat together.
One activity that, sadly, didn’t happen this year was the Christmas Meal. However, the festivities were still celebrated by enjoying takeaway pizzas at the Farmhouse. We even managed to coordinate deliveries to those dialling in remotely. It’s amazing how much pizza our young people can get through!
This has been a hit and it allows everyone to break away from their other activities to chat while enjoying a drink and snack, which is sometimes birthday cake, and we are grateful to the parents and carers who supply these for everyone to share.
Youth Club is open to any members aged 13 and over. We would love to see new faces join us in 2022!
Over the summer we did manage to organise a trip to the Cotswold Forest
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36 MEMBERS ACCESS SPEECH & LANGUAGE THERAPY
SPEECH & LANGUAGE THERAPY
Since the pandemic began speech therapy has been through some significant changes. The pandemic created an even bigger demand for this service and encouraged us to adapt the way we offer therapy.
BY MICHAEL BILLINGE-JONES
Speech and Language Therapy (SALT) is so vital for our children and young people. It needs to become part of their everyday routine and be brought into everyday situations. It’s about making it fun and normal, not different.
Regular speech and language therapy gives our young people the opportunity to further develop their speech and comprehension skills. This enables them to go on to achieve far more than might otherwise have been possible, and become better integrated into our community.
The Swindon Down’s
Syndrome Group recognises the need for this service and we work tiresly to raise money to pay for additional Speech and Language Therapy for our members. We currently have 36 members accessing speech either on-line or face to face. These weekly sessions cost us in excess of £40,000 a year.
Face-to-face sessions
We have contracted C&D Therapy to provide weekly sessions to primarily our younger members. Sessions follow the school calendar, so there are about forty a year.
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We found that younger children interact better with face-to-face speech therapy. Members are assessed and are placed in groups of a similar learning ability. The sessions are held at our dedicated therapy room in Swindon.
The speech room is full of resources to aid the therapist in delivering the classes. Reports are produced each term so progress can be monitored and future goals set. Thirteen of our members have accessed speech therapy face-to-face since September.
‘It has been a pleasure working with the Swindon Down’s Syndrome Group since the start of this academic year (September 2021). Thus far our Speech and Language Therapy service has provided assessment and intervention for 13 children, with more children due to be assessed in the coming weeks. Members are seen in groups or one-to-one depending on their needs and they all receive termly reports (up to 3 a year) to summarise progress and ongoing plans for their input. Sessions have centred around a range of speech, language and communication needs, including vocabulary development, attention and listening, total communication
strategies and speech sound support. Supporting and equipping parents and associated educational staff with strategies and resources has also been a central aspect of the service provided to support the children’s consolidation of skills outside of sessions.
It has been hugely rewarding knowing that the children in this local area are able to access more support through our partnership with the Swindon Down’s Syndrome Group and that we can play a part in helping them connect with those around them and to reach their potential. We look forward to working with more children, families and schools as part of our continued partnership.’
C&D Therapy
Online sessions
Online sessions are provided by Mable Therapy and are on a oneto-one basis. Each session is twenty minutes long. We started using Mable during lockdown as all face-to-face sessions were suspended. We saw the need to continue speech therapy and this was the solution.
With lockdowns easing many of our members have returned to the face-toface classroom setting. Mable sessions are offered to our members who are unable to travel to Swindon, or they progress better accessing the online environment. As these sessions are oneto-one, they are more flexible on the day of the week and time. The Mable sessions also follow the school calendar with end of term progress reports produced. 28 of our members have received sessions from Mable in 2021.
It’s been a busy year for our young people who’ve been accessing online speech and language therapy through Mable Therapy. Since last March, 28 young people have had therapy - between them they’ve had 483 therapy sessions and met 167 of their communication targets! The group members have worked on their social communication skills including initiating and maintaining conversations, generating
questions and developing selfadvocacy skills. Some group members have developed their language skills by increasing the lengths of their sentences, increasing their vocabulary and developing narrative skills. They’ve also worked on understanding of concepts and sentence structures. The group members have worked really hard this year and should be so proud of themselves.
Mable Therapy
We currently provide SALT for our members who are under 25. We are looking to start offering this service to all our members, including adults as we have seen that during the recent lockdowns some of our members speech skills have deteriorated.
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KEEPING FIT AND ACTIVE
Our regular sporting activities were finally able to return following the pandemic.
Swindon DS Active Football by Jo Messenger
The magic is back and our team was reunited! In May DSActive Football returned to face-to-face (or footto-foot) playing after a very long 14 months. Even though they were not able to hug each other you could feel the excitement in the hall as they kicked a ball to their teammates. It was amazing to see them back playing. It was as if they had never been apart.
The team returned to a new venue at The Deanery CE Academy at a new time 6-7pm and what a great venue it is. A secure hall with a viewing gallery for the parents. The team have really developed in this new environment.
Thank you to the Swindon Bus Company who in August gave us a grant and we were able to purchase new football shirts and kit the team out.
In September the team had a wonderful surprise when Swindon Town FC Community Foundation organised a visit from Ben Fox, the Paralympian Wheelchair Basketball Bronze medallist, who brought his medal to show the team. It was a real privilege to meet him and have photos taken.
In October, Swindon Town FC were playing at home to Bradford City and the team were invited to play on the pitch at half time. A great opportunity to show off their skills in front of a crowd. A great time was had by all and a celebration run around to the cheers of the fans were in order.
The one thing we all noticed after a 14-month break was the fact the lads had grown, and their football kit was a little on the snug side. The need for new kit was now at the top of our list and the group started to look for grants that could help us out.
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Padel Tennis
by John Stow
The Group have teamed up with Padel4All, who built a new 3 court centre at nearby Bassett Down Golf Complex. Padel tennis is played on a smaller court than normal tennis and only in doubles format, which makes it more suitable for any members with restricted mobility. Our players have been learning how the rules differ and the type of shots they need to
use to outwit their opponents. We are grateful to manager Steve who has created a DS-specific session in his weekly coaching calendar. You can find out more by emailing tennis@ swindondownsgroup.org.uk
Tennis
by John Stow
We had to wait until after Easter before tennis resumed at Delta Tennis Centre. The sessions moving to a weekday has impacted attendance, but a few regulars continue to enjoy the various games and challenges created by the coaches to help learn the skills of the game.
There were also a reduced number of LTA Learning Disability competitions during the year. However, we were really pleased that we now have two players from the Group involved in some of the competitions. More so, when Lane and Alex ventured to Newport in October and returned with doubles gold in their category, leading to them naming themselves ‘Welsh Champions’. They also managed silver and bronze in the singles. There is a full programme planned for 2022 so we hope to send more members to one this year. You can find out more information about the sessions by emailing tennis@ swindondownsgroup.org.uk
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11 MEMBERS CUURENTLY TAKE PART IN OUR DANCE CLASSES
Cricket
by John Stow
Wiltshire County Cricket’s disability programme created a “Super 1’s” hub in Swindon and a number of our members attend each week to learn basic cricket skills. These were held at Swindon CC during the summer months and have moved indoors until the lighter evenings return in the Spring. As well as the sporting aspect these sessions occasionally workshop specific life skills, such as safety on the railways and healthy eating, by integrating learning with practicing cricket skills.
Swimming
by John Stow
Our fortnightly swimming sessions at Thamesdown Hydrotherapy Pool had to wait until April before restrictions were lifted. Initially the 10 person maximum was still in place but ‘normality’ resumed in the summer, when we were able to offer some extra holiday sessions. Vicky Hunt continues to offer coaching to our swimmers at the sessions and everyone benefits from the individual attention that she can give them.
Dance
by Kim West
hers to work with children and young people with Down’s syndrome and thanked me for making this happen.
As a Group we now offer Dance classes on a Friday evening 5-6pm. This is something that we have been looking at running for a few years. Thanks to our Trustee, Martyn Coles, this has been made possible. Martyn introduced us to Bobbi Newman who owns Bobbi’s Academy of Dance.
Dance is a fantastic way of keeping our young people fit, and brilliant for their physical and mental wellbeing. These sessions are attended by 11 of our young people and they are all practising a routine that will be shown to friends and family at The Wyvern Theatre in June 2022.
When I spoke to Bobbi about starting the Dance classes, she burst into tears as it had been a lifelong dream of
In addition to what we have been able to provide, we have remained in contact with the local clubs who previously ran basketball and athletics sessions for the Group so we hope that 2022 will be less disrupted and that all our members can have the chance to enjoy some physical activities.
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NEW WORKFIT LIAISON OFFICER
We are really pleased to tell you that we have now successfully employed our new WorkFit Liaison Officer for the Swindon Down’s Syndrome Group.
in the workplace. Work can be anything from paid jobs, volunteering roles, work experience (paid/unpaid) or supported internships/apprenticeships.
As many of you will know, the partnership between the DSA’s WorkFit programme and the Swindon Down’s syndrome Support Group began in 2015 and since then it has been providing a tailored employment programme for people with Down’s syndrome in Swindon and Wiltshire.
In October of last year, Roy Perrett joined the WorkFit team, working two days a week and he has already had success in placing a candidate in Swindon and has a number of other opportunities in development. Roy has first-hand knowledge of the WorkFit programme and supported Luke to secure permanent paid work at Wiltshire Police. You can hear from them both via the WorkFit YouTube channel.
WorkFit brings together employers and jobseekers who have Down’s syndrome. It is a tailored service dedicated to training employers about the learning profile of people who have Down’s syndrome so that they can be supported
In November Roy was involved in supporting a pilot project with HSBC in their Chippenham and Swindon branches and also hosted a Candidate and Parent online event for the Swindon Down’s Syndrome Group members in November. Roy was interviewed by BBC Radio Wiltshire and BBC Points West, and the Swindon Advertiser following a DSA press release about his new role.
Roy has been getting to know candidates and their families and working with them to create Vocational Profiles and CVs. He is currently developing an exciting opportunity with a major brand in Marlborough.
As we emerge from the Covid-19 Coronavirus pandemic it is encouraging
to see the number of employers who are keen to work with us.
Last year WorkFit had some fabulous achievements including presenting a keynote speech at the World Down’s syndrome Congress on 20/11/21. Two WorkFit members won awards (one candidate and one employer) at the British Association of Supported Employment Conference 2021
Overall the WorkFit programme is going from strength to strength and Roy is committed to supporting Swindon Down’s Syndrome Group members and their employers in the Swindon area.
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NEW WEBSITE AND ONLINE SHOP LAUNCH
We are really pleased to announce the launch of our newly designed website.
BY CAILEY WHITCHER
Our old website was starting to look a little outdated and we wanted it to be able to do more! Thanks to a donation from the late Penelope Clanchy this was made possible.
We teamed up with local web development agency Pink Fish Associates, to create a modern, fully functioning responsive website which includes a brand new online shop!
Our new website has been designed to make it easier to
get advice, find information about Down’s syndrome and the support that we can offer.
With information now broken down into age-related categories and dedicated pages for the many avenues of support we offer.
Our website will now be home to blogs and articles on a range of topics and to help you keep up to date with the Group’s activities we have a dedicated events page.
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CHRISTMAS BOXES
We’ve even added our membership form to the website which will make renewing your annual membership even easier.
“It’s fantastic to see our new website in all it’s glory! We have worked incredibly hard to get it ready for launch and we are excited for all the opportunities it is going to give us, especially with the new online shop.
We hope the website is filled with everything families need to know and helps us support more people in our community.”
Our new online shop is going to open up a world of opportunities for the Group. We’ve uploaded all the products we offer so everything is available online.
BY CAILEY WHITCHER
Unfortunately a rise in covid cases meant that holding our infamous Christmas party was once again not an option this year so we decided to spread some Christmas cheer in a different way...
We delivered Christmas sacks filled with wonderful activities, gifts and treats. Zurich Community Foundation kindly donated selection boxes for all our members.
As per last year we couldn’t end the year without doing something for the families we support so the Trustees with the help of Swindon Children’s Scrapstore, Zurich Community Foundation, Tesco’s Ocotal Way and Morrison’s Dorcan Way.
The Trustees and their helpers, once again, filled their cars and headed across Swindon and Wiltshire to spread to some festive cheer.
While the Christmas sacks will never replace the traditional fun and games of our Christmas party it was great that we could do something to bring a bit of festive cheer again. Let’s hope that we can get back to celebrating properly in 2022!
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IT’S ALL THANKS TO YOU, OUR SUPPORTERS
We are so grateful to everyone who has supported us over the past year.
We owe a huge thank you to every single person, group or business that has helped us to support our young people with Down’s syndrome. In particular we’d like to thank the following supporters.
OUR PATRONS
Cliff Puffett Julie Thomas
OUR TRUSTEES
Kim West John Stow Sam Harding Cailey Whitcher Jo Messenger Michael Billinge-Jones Victoria McGuire Lauren Craigie Cherylin Hempleman Martyn Coles
OUR SUPPORTERS
The Julia & Hans Trustees Wiltshire Community Foundation Voluntary Action Swindon The Crown Inn
Tracy Blackler friends & family RWE Generation UK Plc Swindon Rotary The Care Forum Marina Billinge-Jones Hilliers Funeral Services Claire’s birthday fundraiser Lydia’s birthday fundraiser Layla’s birthday fundraiser Little Pioneers Pre-School Moredon Primary School VW Group Specialist Ltd Stephen McGuire C4S Search Ltd Fairfield Farm College Zurich Insurance Swindon Clare North Mr & Mrs Novis Price Thomas Samantha Ford Diana Rowlands Amanda Hancock Jake Hancock Verity & Victoria Argue Emma Firman Lynne Hayward Rhoda Lewis UK Online Giving Foundation Mr & Mrs Sheik Fast Link Data Cables Ltd Marlborough College ASDA Foundation Penelope Clanchy Bro-vember Karen & Pete Jackson Swindon Town Football Club
Groundworks UK Imogen Dick Mandy McKinley Kim Poulton Clare Peters Hannah Dias Barbara Leonard Rose Leonard Gemma Thompson Ian Tuckwell Swindon Bus Company Arnold Clark Swindon Sherry Baffour Clare Stow Judi McKendrick Pink Fish Associates Nutmeg Design Coles Scaffolding Ltd Whitehall Garden Centre Wiltshire Police HSBC Padel4all Basset Down Bobbi’s Academy of Dance DSActive Thamesdown Hydro Pool Wiltshire County Cricket Super1 Hub Toothill Farmhouse Copy Color Grange Leisure Centre Don Rogers John Trollope Phil King Mark Brooks Stephen Trowbridge Geoff Maitland And... Everyone that purchased a pair of #lotsofsocks from us!
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FUNDRAISING
Green tokens helps us to raise money for Adult Speech Therapy
We were pleased to announce that thanks to all your voting efforts that we were awarded £500 from The Asda Foundation through it’s Green Token Giving scheme. This money will be used towards our fundraising goal of £20,000 so that we can start to offer adult speech therapy to our members.
We would like to say a massive thank you to everyone that took part in the Healthwatch Swindon COVID-19 Survey. 47 people completed this for us and in doing so raised £235 for the Group.
Swindon Bus Company buys us a new football strip
It was fantastic news for our DSActive team to find out that The Swindon Bus Company had thrown its support behind us - by providing us with a new kit as part of it’s community fund.
Joanna Messenger added, “This is a wonderful gesture. Our players will wear their shirts with pride, and I’m sure they will have added confidence when they play. We can’t thank the Bus Company enough for this fantastic grant.”
The Swindon Down’s Syndrome Group were delighted to have been selected to receive £1,000 through the Persimmon Homes Community Champions scheme. This money went towards funding Speech and Language Therapy.
Christmas prize draw raises over £1400
Thank you to Zurich Community Trust for making four beautiful hampers for our Christmas prize draws! We were also kindly donated a photoshoot experiencce day by Imagine Photography as a prize. The raffle raised raised over £1400!
Snooker legend plaque auction
We were kindly donated a signed Ronnie O’Sullivan plaque by Snooker Legends to auction on Ebay to help raise funds for the Group.
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Jake’s head shave helps support new parents
Jake Hancock is the brother of Charlie. He shaved his head to raise funds for our New Parent Congratulations Packs. The packs are given to new parents shortly after the birth of their baby and include a congratulations card, information about Group, support books, a toy, clothes, baby hat and blanket plus milestone cards.
Here's his fundraising story...
"It was the morning of 24[th] February 2021 when Alex Hamilton, Head of IT pointed out on a Teams call how long my hair was getting. He light-heartedly mentioned how I should shave my head for charity to which I replied, “No chance”. Now, if anyone knows me they know how precious I am about my hair (I’ve only let one barber touch my hair for the past 10 years), that said the offer dawned on me. I took the morning to think and decided what better way to raise awareness of World Downs Syndrome Day than a work fundraiser.
I set a target of £150 which would be given to the Swindon Down’s Syndrome Group – as my brother, Charlie, has Down’s syndrome. Unsurprisingly the target of £150 was smashed and the total sum raised by the team equates to £350, but it does not stop there. Ryan O’Hara, Managing Director & Co-Founder and Ben Rutter, Director and Co-Founder decided as a collective that if C4S hit our monthly target then C4S Search would double the total money raised!”
With the support of everyone at C4S Search a total of £700 was raised. A massive thank you and well done to everyone at C4S Search as well as Ryan and Ben for their great efforts in this fundraising event.
Steve’s Big Double Marathon Devon coast Trek
While most of us were preparing to get the kids back to school, last September, Steve McGuire was planning to walk a double marathon!
Steve, is father to 9 year old Harry. Steve and his family have been a part of the Group since Harry was a baby. It was Harry who kept Steve going during the gruelling trek.
Steve walked 50 miles around the Devon coast to raise money for the Brain Trust and the Swindon Down’s Syndrome Group. Up and down cliffs, across fields and along beaches, this stretch of South West Coastal Path is one of the toughest walks in the UK.
“When the hills were getting steeper and the blisters were getting bigger, I remembered all the challenges Harry faces every day of his life and how, despite this, he always has a smile on his face. I would walk to the end of the Earth for him.”
Steve raised an incredible £1554 for the Swindon Down’s Syndrome Group and a similar amount for the Brain Trust. Thank you and well done Steve!
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Mini auction raises over £800
To celebrate World Down Syndrome Day, VW-Group Specialist Ltd decided to auction off one of their cars and donate the proceeds to the Swindon Down's Syndrome Group.
Chris Fry who owns VW-Group Specialist Ltd added, “This is a cause close to our hearts as many of you know our little boy Oscar has Down’s syndrome. It has been a very difficult year for charities so we want to show our appreciation to the group.”
The auction for the Mini Cooper took place on Ebay and ended on World Down Syndrome Day. The car came with a service and 12 months MOT.
As part of our World Down Syndrome Day celebrations the Group held an online quiz night for our members and their families. Thanks to our quiz master Ian Tuckwell for hosting!
Quiz, curry nights and raffles raise over £1,000 for the Group
The Crown Inn and it’s fantastic customers have been huge supporters of the Swindon Down’s Syndrome Group for many years. They’ve given us so many opportunities to hold fundraising events and raffles at their pub.
In a time when pubs have had as equally hard time to recover from the pandemic, The Crown Inn were back supporting us as a charity. This year they held Halloween and Christmas raffles at their Sunday night pub quiz. Andrew and Lane from the Group were on hand to draw the tickets! The two raffles rasied over £250.
Our favourite event has to be the Quiz and Curry Night held in November. We’ve never seen an event fully booked within just a couple of weeks of advertising it. While numbers had to be kept to a sensible level to ensure everyone’s safety, it was fantastic to see so many people out on a Saturday night, enjoying themselves and raising money at the same time.
We were truly astounded when the pub announced they had raised £1,050 for us! Thank you to all the staff and customers for continuing to support us!
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Down’s Awareness Week 2021
The #LotsOfSocks campaign was initiated in 2013 to help raise awareness of Down’s syndrome and celebrate World Downs Syndrome Day on 21[st] March each year.
The idea of using socks is that the shape represents the chromosomes we each have, and the bright colours and patterns draw people’s attention and raises awareness.
Despite Covid putting a stop to most things, we rallied the troops and had overwhelming support from our members, families, and friends for our #LotsOfSocks sales for World Downs Syndrome Day 2021. Our socks and sock monkeys went far and wide to raise awareness of both Down’s syndrome and the work of the group. Whilst some sock sale opportunities are still out of reach, we are hoping to smash last years sales of socks in 2022!
Decorating cakes for WDSD... and what a great smile!
Sock monkeys and #LotsofSocks for our lovely members
Little Pioneers Nursery getting involved for WDSD
Roy Perrett showing off his socks for WDSD
Alex and his classmates from Nursery wearing ~~odd socks~~
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- Fairfield college have been huge supporters of the Swindon Down’s Syndrome Group for a number of years - each year choosing to sell socks for us - thank you!
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The amazing students at Fairfield
college showing of their socks
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Our Patron Julie showing off her #LotsofSocks
and WDSD window sticker
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Indoor market raises over £100
Our stall at the MECA indoor market helped raise over £130. A huge thank you to Victoria and Harry McGuire and Martyn Coles for running our stall.
Festive market stall helps support us
Thanks to Clare and Lane Stow who ran a stall at the Christ Church Christmas Market in Old Town raising money for the Group.
what they could during the 4 weeks that the challenge was running. They ran, walked, cycled and played sports to cover the distance.
In July we unveiled eight members of the Swindon Down’s Syndrome Group who signed up to take part in Superheroes on Vacation, the summer’s Marvel Superhero Challenge set up for us by Zurich Community Trust.
Monies raised will be used towards trips and outings suitable for all of our members and their families.
Our team of Superheroes named themselves The Incredible T21s.
We set ourselves the target of raising £500. The Incredible T21s smashed this target raising an incredible £825! Thank you to everyone who donated.
The aim of the virtual challenge is to help a wider team travel the virtual equivalent of around the globe. It’s 55,000 km but each Superhero did
Christmas Sing-Along is back for a second year!
Our Christmas Sing-Along returned for a second year and was just as popular as ever! This years chosen song was Rudolph the Red Nose Reindeer. We had a fantastic response with over 300 views and lots of likes. A huge thank you for all those made a clip and to those generous people who donated.
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Sam takes on 21 challenges to raise money for two local charities
Throughout 2021, Sam Pierce supported by his mum Leslye, has been raising funds for two charities that have supported him, over the years, the Swindon Down’s Syndrome Group and Uplands Educational Trust. Sam has set himself twenty-one personal challenges that he will aim to complete by World Down’s Syndrome Day, 21[st] March 2022.
The challenges are either sports related, adventures or motivational. Sam and Leslye have been raising money through sponsorship, raffles and tombolas. Leslye commented, “Both charities are close to my heart for different reasons and we all know how smaller charities have struggled throughout the pandemic.”
Sam has been very fortunate to have been supported by some fantastic companies who have helped make his challenges happen. So far Sam has completed over half his challenges, from making friends with snakes, riding 21 different rides at Thorpe Park in one day, flying a plane and completing the Phoenix Rotary Santa Run
Not only that members of the Swindon Down’s Syndrome Group have rallied around donating raffle prizes, helping to arrange challenges or simply cheering Sam on. Congratulations to Sam on all his achievements so far. We can’t wait to hear what you raise when your challenges come to an end in 2022!
Christmas carol concert raises over £500
In December The Swindon Rotary organised a Christmas Carol Concert in Old Town. We were asked to come along and help, with several of our members volunteering. The concert was a fundraising event with proceeds being shared between The Swindon Food Collective and our Group. Sue Frawley from The Swindon Rotary presented us with a cheque for £655.16. We would like to say a huge thank you to the Swindon Rotary for all their hard work organising such a fantastic event and for this amazing donation.
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GOVERNANCE & MANAGEMENT
Charity name: Swindon Down’s Syndrome Group Charity number: 1158449 Principal office: 34 Periwinkle Close, Swindon SN2 2QH
Governing document
Swindon Down’s Syndrome Group is constituted as a charitable incorporated organisation (CIO) registered with the Charity Commission. It is governed by a constitution last updated in 2018.
Recruitment and appointment of trustees
The existing trustees are responsible for the recruitment of new trustees. In appointing new trustees we seek people who are part of our local community. Potential trustees are invited to trustees’ meetings or to meet with the chairperson to learn more about the charity’s aims and objectives. If all trustees agree they are proposed as new trustees. New trustees are required to complete a DBS check and given a three month trial. This process allows due consideration of the person’s eligibility, personal competence, specialist knowledge and skills.
Charitable objects:
The objects of the CIO are to relieve the charitable needs of people with Down’s syndrome, and their families, helpers and carers in particular but not exclusively by the provision of support and information and speech and language therapy so that they are able to attain their full potential and to undertake any other charitable activities in connection with the relief of Down’s syndrome in the SN postcode and the surrounding area. (Area of Benefit)
Surrounding area to be defined as – “post code areas associated to Fairford, Malmesbury, Hungerford, Pewsey, Marlborough, Hullavington, Chippenham, Devizes, Calne, Ashton Keynes, Cirencester, Aldbourne, Bromham, Melksham and Cheltenham.”
Activities:
We are a parent-led charity supporting people with down’s syndrome, their families, carers and all those with an interest in down’s syndrome in Swindon and the surrounding area. We are an independent charity, affiliated to the national down’s syndrome association.
Organisation structure
The charity trustees are responsible for the general control and management of the charity. The trustees give their time freely and receive no remuneration or other financial benefits.
The trustees meet together as a body monthly and are responsible for all decisions taken in relation to running the charity. The charity can have a maximum of 10 trustees.
| Trustee name | Offce | Dates acted if not |
|---|---|---|
| (if any) | for wholeyear | |
| Kim West | Chair | |
| John Stow | Vice Chair | |
| Sam Harding | Treasurer | |
| Cailey Whitcher | Secretary | |
| Michael Billinge-Jones | Vice Treasurer | |
| Joanna Messenger | ||
| Victoria McGuire | ||
| Amanda Ager | Resigned 15/2/2021 | |
| Royden Perrett | Resigned 24/4/2021 | |
| Ian Tuckwell | Vice Treasurer | Resigned 24/4/2021 |
| Lauren Craigie | 24/4/2021 - Present | |
| Cherylin Hempleman | 24/4/2021 - Present | |
| Martyn Coles | 24/4/2021 - Present |
Public benefit
The trustees have paid due regard to the Charity Commission’s guidance on public benefit in deciding what activities the charity should undertake. The trustees consider that they have acted in the public benefit.
Conflicts of Interest
The Trustees have paid due regard to the Charity Commission’s guidance on Conflicts of Interest and the Trustees only act in the best interests of the Charity. The Swindon Down’s Syndrome Group have strong systems in place to identify conflicts of interest and we ask each Trustee to declare any conflicts at the beginning of every meeting.
Financial review and reserves policy
At 31 December 2021 the charity held total funds of £83,518 of which £75,158 are restricted and £8,360 are unrestricted. Unrestricted funds include designated funds of £906 for the website and £5,000 for Speech. Free reserves are £2,454. The charity has minimal overheads as it is run by volunteers and so does not need to build up free reserves. The main commitment and the charity’s highest cost is paying for Speech therapy, which will cost some £40,000 for 2022. Therefore any excess free reserves are designated to the Speech fund. The restricted funds comprise:
Speech
| Donations and grants to provide speech therapy | £33,409 |
|---|---|
| Salamander | |
| Donations and grants to run fund the fre course | £8,620 |
| WorkFit | |
| Donations and grants to support adults in the | |
| world of work | £5,555 |
| Other smaller funds | £27,574 |
| Total restricted funds | £75,158 |
Approved by the trustees and signed on its behalf by:
Kim West, Chairperson Swindon Down’s Syndrome Group
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THE FUTURE
Our mission continues 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.
Our ambition in 2021 was to build on our speech therapy provision by offering speech therapy to our adult members (over 25). We have been working hard behind the scenes to make this happen and are confident that we should be in a position to launch this in 2022. Finding the money for projects like this has become more challenging since the pandemic but we are committed to making it happen!
We had hoped 2021 would allow us to get back out into the community but Covid had different ideas. While we were bound by restrictions for a large part of the year it limited our ability to fundraise in the same way. We hope that in 2022 we can actually get back out into the community again, bringing in much needed funds.
Our biggest aim for 2022 is to get back to holding social events again and having some fun! Our group is all about families sharing experiences and it is so important for our younger members to meet our older ones and be able to support each other.
We want to continue to develop our relationships have relationships with local schools. In 2021 we delivered a talk to the Early Years SENCo team and hope to offer events like this going into 2022.
We hosted our first Royal College of Midwives accredited training scheme Tell it Right event in 2018 where it was all about changing perceptions of Down’s syndrome. Over 60 midwives from Swindon and the surrounding area took part and we feel after four years (and a pandemic) it would be valuable to do it again.
We always welcome the ideas and support of our parents and carers, we would love for more of you to be involved in shaping what do. Together we can do great things.
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The 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 ©2022 Swindon Down’s Syndrome Group. Designed and produced by Cailey Whitcher www.nutmegdesign.co.uk
www.swindondownsgroup.org.uk
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Section B Statement of assets and liabilities at the
Categories
Details
B1 Cash funds
Santander Teachers Building Society Paypal
Total cash funds (agree balances with receipts and payments account(s))
Details
B2 Other monetary assets
Details
B3 Investment assets
Details
B4 Assets retained for the charity’s own use
Details
B5 Liabilities
Signed by one or two trustees on behalf of all the trustees
Signature
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e end of the period
Unrestricted Restricted funds Endowment
funds funds
to nearest £ to nearest £ to nearest £
3,421 48,986 -
- 29,788 -
- 734 -
3,421 79,508 -
OK OK OK
Unrestricted Restricted funds Endowment
funds funds
to nearest £ to nearest £ to nearest £
- - -
- - -
- - -
- - -
- - -
- - -
Fund to which asset Current value
Cost (optional)
belongs (optional)
- -
- -
- -
- -
- -
Fund to which asset Current value
Cost (optional)
belongs (optional)
- -
- -
- -
- -
- -
- -
- -
- -
- -
Fund to which Amount due When due
liability relates (optional) (optional)
-
-
-
-
-
Print Name Date of approval
Kim West 03/18/2021
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| Charity Name Swindon Downs Syndrome Group |
Charity Name Swindon Downs Syndrome Group |
Charity Name Swindon Downs Syndrome Group |
Charity Name Swindon Downs Syndrome Group |
Charity Name Swindon Downs Syndrome Group |
No (if any) 1158449 |
No (if any) 1158449 |
No (if any) 1158449 |
CC16a | |
|---|---|---|---|---|---|---|---|---|---|
| For the period from |
Period start date 01.01.19 |
To | Period end date 31.12.19 |
||||||
| Section A Receipts and payments | |||||||||
| A1 Receipts | Unrestricted funds to the nearest £ |
Restricted funds to the nearest £ |
Endowment funds to the nearest £ |
Total funds to the nearest £ |
Last year to the nearest £ |
||||
Donations |
3,851 | 45,403 | - | 49,254 | 27,928 | ||||
| Outings/Parties/Sports | 985 | - | 985 | 5,631 | |||||
| Fundraising | 388 | 14,190 | - | 14,578 | 23,522 | ||||
| Miscellaneous | - | - | - | ||||||
| Training | 536 | - | 536 | 2,096 | |||||
| Speech Therapy | - | - | - | ||||||
| Interest | 90 | - | 90 | 127 | |||||
| Membership | 1,080 | - | 1,080 | 905 | |||||
| Sub total | 5,319 | 61,204 | - | 66,523 | 60,209 | ||||
| A2 Asset and investment sales, etc. Total receipts A3 Payments |
|||||||||
| - | |||||||||
| 60,209 | |||||||||
Outings/Parties/Sports/Clubs |
20,557 | ||||||||
| Fundraising | 40 | 6,871 | |||||||
| Newsletter/Postage | 4 | 1,969 | |||||||
| Speech Therapy | 1,000 | 16,705 | |||||||
| Training | 1,512 | ||||||||
| Miscellaneous | 3,776 | 3,945 | |||||||
| WorkFit | 530 | ||||||||
| - | |||||||||
| - | |||||||||
| **Sub total ** | 4,820 | 52,089 | |||||||
| A4 Asset and investment purchases, etc. Total payments Net of receipts/(payments) A5 Transfers between funds A6 Cash funds last year end Cash funds this year end |
|||||||||
| - | |||||||||
| 52,089 | |||||||||
| 8,121 | |||||||||
| - | |||||||||
| 52,076 | |||||||||
| 60,197 | |||||||||
| Section B Statement of assets and liabilities at the end of the period | Section B Statement of assets and liabilities at the end of the period | Section B Statement of assets and liabilities at the end of the period | Section B Statement of assets and liabilities at the end of the period |
|---|---|---|---|
| Categories Signed by one or two trustees on behalf of all the trustees B1 Cash funds B2 Other monetary assets B3 Investment assets B4 Assets retained for the charity’s own use B5 Liabilities |
(agree balances with receipts and payments account(s)) Details Santander Teachers Building Society Paypal Total cash funds Details Details Details Details Signature |
Unrestricted funds Restricted funds to nearest £ to nearest £ 3,421 48,986 - 29,788 - 734 3,421 79,508 OK OK Unrestricted funds Restricted funds to nearest £ to nearest £ - - - - - - - - - - - - Fund to which asset belongs Cost (optional) - - - - - Fund to which asset belongs Cost (optional) - - - - - - - - - Fund to which liability relates Amount due (optional) - - - - - Print Name Kim West |
Endowment funds to nearest £ |
| - | |||
| - | |||
| - | |||
| - | |||
| OK | |||
| Endowment funds to nearest £ |
|||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| Current value (optional) |
|||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| Current value (optional) |
|||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| When due (optional) |
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| Date of approval |
|||
| 18/03/2021 | |||