Before becoming Down’s Syndrome North East, Edwin Forest, Michael Kirk, and Ken Moore were amongst a small group of parents in this area who formed a support group under the umbrella of the Down’s Syndrome Association. They and the committee at the time organised events and activities for families from play sessions, and Christmas parties to conferences and support groups for everyone who has Down’s syndrome from pre-birth through adulthood. Two of the current committee Ros and Linda have been involved since those early days.

DSNE was established as a charity in its own right in 2003 and covers Northumberland, Tyne and Wear, County Durham, and Tees Valley.

It is and always has been volunteer parent/carer led- no paid staff. We decided to launch our own charity to have more control over our finances and to promote activities and events in the North East.

We have continued to grow and provide more opportunities and activities for people with DS and their families.

Twenty one years ago we held the launch of DSNE at the Stadium of Light, Sunderland and it was a very enjoyable event.

The Duchess of Northumberland and Bill Midgely OBE, two of our patrons, attended the event. The Duchess officially opened the event with a very supportive speech and this was followed by a Fashion Show with fashions from John Lewis, Newcastle, in which many of our children who were a representative selection from our membership were models. This too was well produced and well received by our assembled members and guests.

The models enjoyed the attention and some were able to talk about their hopes and dreams. The theme was ‘Reach for the Stars’. The photos show how proud they all were to be taking part.

BLAST! was DSNE’s very first collaboration with Tin Arts, led by our tireless and truly inspirational committee member Ros Collinson. It all started back in 2004 when ‘Best Foot Forward’ was introduced at ‘The Gala Theatre’ in Durham. Art and dance workshops, for our adult members, run for two days over one weekend. This is followed by the dance performance the following weekend. We have teamed up with Bearpark Artists, Crushed Chilli Glass, and Sheryl Jenkins Animation to name but a few. Artwork has been displayed at the Gala Theatre, as part of the scenery for the BLAST! dance and at The Gala Ball. Melanie Atkinson and Gill Dean now run the weekend of workshops annually. It is a truly special event in the DSNE calendar, enjoyed by so many of our talented members.

DSNE held its first Gala Ball in 2008 at the Gosforth Park Hotel. It was a great occasion for adults with DS and their families to get dressed up and have a fun evening. There were 78 people at the first Ball and 170 at the most recent Ball.

The Ball is organised to celebrate World Down’s Syndrome Day.

It is lovely to see everyone enjoying themselves, making new friends, greeting old friends, and being very dressed up. We have had some great Bands lots of dancing, good food, and fun in the photo booths.

Groups of adults have been involved and had a fun afternoon at the Marriott making cupcakes to be served at the Ball in 2016.

Adults with DS have attended tasting sessions over the last few years to help decide on the menu for the Ball.

We have had Flash mobs to James Bond themes, magicians entertaining the guests, and lots more.

It is a great opportunity to relax, enjoy good food, and good entertainment, and meet up with friends old and new.

All of the trustees of DSNE are parents of someone who has Down’s syndrome and so we’ve all been in the position of getting unexpected news from a doctor or midwife. We also know that when your baby is tiny, you often have no idea about what or who is out there to support you and your family.

So we wanted to make sure that new families were welcomed into the community and their baby’s birth is celebrated.

That’s how the idea for new baby gift boxes came about. The first boxes were delivered to new families in 2021 and in the last three years, over 100 gift boxes have been delivered to maternity and neonatal units, sent by post or hand delivered to families across the region. We work with every hospital maternity unit in the North East and we have been lucky enough to partner with other organisations and charities who have provided invaluable funding and contents for the boxes. It is a delight to get such lovely feedback about how well-loved the gift boxes are by families and healthcare professionals alike.

Circle of Friends is a group that was set up in 2007 by Ken Moore and adult members. The group is specifically for members aged 18 and over.

At the first meeting, the group chose the name ‘Voicebox’ for their newsletter.

They also agreed on the motto that is still followed:

Enjoy – Encourage – Include – Accept – Respect

For a number of years now DSNE have offered the chance for our adult members to go away on a weekends residential. These are often seen as respite for families but for our adult members it is so much more. The weekend away is time spent with others establishing and maintaining friendships. It allows our adult members to develop their independecne and daily living skills in a safe and supported environment. For many it is their first time away from home without their parents / carers. It is a chance to partake in a range of activities that they might not have done before as well as developing team building and communication skills.

The weekends allow our members to take part in challenging activities such as climbing, archery, developing and pushing their physical skills whilst being supported. It is also a chance for them the organise themselves and be independent whilst being supported by others. The confidence it instils in them is great to see. It develops communication skills and working as part of a group. These weekends away are tremendous fun and everyone greatly benefits from them. It is amazing that DSNE has been able to offer such an experience once a year for our adult members – with many looking forward to the event the following year.

Just a few of the fabulous people who have raised funds for DSNE by doing the Great North Run over the years.

Good luck to all our runners in 2024!

At the very start of Lockdown, the idea for Marty’s parties was born. Our very first party on zoom was an ‘Elvis’ party on May 12th 2020. Since then we have enjoyed many Tuesday nights in the company of Marty and our lovely DSNE Zoom party gang.

On August 5th 2023 we had our very first Marty’s Party Live. A truly heart-warming event filled with great dancing, fun, friendship and lots of sausage rolls. September 7th 2024 is the next Marty Live, be there or be square!

Our very first Pilates Plus event was in February 2019 at the studio of our super instructor Marie from ZenergiZe Pilates. It was so popular we soon had to find a bigger venue. During Lockdown Marie continued to keep us fit and connected via Zoom. These regular twice weekly sessions are still going strong today.

We have a lovely group who have a great workout, we all look forward to the guided meditation and chat with each other at the end of the session. Initially it was named Pilates ‘Plus’ because of the extra keep fit moves Marie adds to make it great fun. Now that ‘Plus’ has developed to mean much more. Our group have become good friends, we always share our news, both good and sad, sing happy birthday, meet carers and family members, including new babies and last but by no means least introduce our adorable pets.

We would love to have more people join us, you don’t have to come into every session, dip in and out when you can.

email: melanie.atkinson@dsne.org.uk for details.

We are lucky enough to have been enjoying shows from Singing Hands in the North East for many years. Many of our families have grown up with Suzanne and Tracy’s Makaton singing and signing and they are like part of the family for a lot of us.

From March 2020, Covid stopped us from enjoying our face to face shows, so instead we had lots of fun with regular online sessions including pop parties and Christmas parties.

In October 2022, Suzanne and Tracy came back to the region for a show in Middlesbrough and we look forward to having them with us again in September this year.

For the past 7 years DSNE have run art workshops for members aged 16+. These have been led by Karen from Tiddly Painters, are held a number of times across the year and are extremely popular. They started off in North Tyneside and are now run in Sunderland.

Members from across the region attend them regularly. Karen leads us through painting various designs – from bright coloured ostriches, to the bridges over the Tyne, from roosters and cows to skylines and people. Each workshop we look at the end product and think ‘how will we do that’ but each time we are amazed at the quality of work our members produce – each one individual and dynamic. These workshops develop members creative sides in a safe and supported environment as well as developing friendships.

Over the years the art work produced has been copied and made into exhibitions. People kept asking to buy our artwork so we started taking orders. Sales were good and funded more workshops. We have even had designs made into Christmas and greetings cards and sold. Our art exhibitions have been very popular. We have been invited to have our next art exhibition and sale of work at County Hall Morpeth for the month of November. We’re looking forward to putting it together, using masterpieces from past workshops and ones in the future.

In 2020 COVID hit and like all places, DSNE had to stop having face to face activities. The committtee had to think of other ways to stay in contact with our membership, as well as providing activities to keep everyone together and continue fundraising. Like everywhere, COVID was having a significant impact but DSNE managed to continue to provide a range of online activities for families of all ages. having a significant impact but DSNE managed to continue to provide a range of online activities for families of all ages. We also regularly reached out to families via email and on social media, checking everyone was ok and if any support was needed. Social media was our way forward. Initially we ran discos on Facebook which were well attended by families of all ages. We then moved to Zoom and ran music sessions for younger children, parties with Singing Hands, Pilates and Marty‘s parties (see separate pages). We shared lots of online support and advice, ran fundraising events including raffles, and showed everyone how to use Makaton signing. We ran a virtual summer fair with games, quizzes and activities, which was lots of fun. We also encouraged families to decorate their houses for World Down Syndrome Day and had pamper evenings on line following the guidance of a therapist.

The Ceilidh tradition started well before DSNE, one of our founder members Ken Moore was instrumental in organising them, great fun was had by all. After a rather long gap they were resurrected in 2018 and held at Gosforth Civic Theatre. The wonderful Sandy Still band played and guided us skilfully through the steps. There was a magician, games, food and most of all lots of fun. Lock down meant another break in the tradition, but that is to be remedied on October 19th 2024. Get the date in your diary now folks.

We have held many conferences and workshops over the years, on a wide range of topics, and are keen to have more. Speakers have included our adult members, their families and local and national professionals. Our members have also delivered training to schools and many other groups and organisations, and helped to dispel some myths and raise awareness.

We would love to hear your suggestions for future topics.

Our family celebration day is held in March every year to celebrate World Down’s Syndrome Day. It is held every year during the same weekend as our gala ball. We enjoy welcoming new families and catching up with friends. Entertainment includes a magic show, party games and dancing, face painting, art workshop, balloon modelling, pizza making and a delicious buffet lunch. It is a joy to see our youngest DSNE members enjoying the party every year as they are growing up.

DSNE provides a range of activities for all ages across the year. Activities are provided from birth up to adults across the North East region. Activities allow members to get together and meet other families and also to try out activities in a safe, encouraging and inclusive environment.

Sensory fun session

Soft play opportunities

Music sessions

Christmas parties –junior and mid age

Farm trips

-New year party -18+

18+ Discos

Picnics in the park

Caravan holidays

Swimming

Forest schools

Bowling

Art workshops

Pottery painting

Cake decorating

Craft sessions

Activity days

Water sports

Indoor games

Snow tubing

Glass tile making

Wood Workshops

Art and tile workshops

Marco Haynes

Marco was born at 26 weeks in Sunderland Royal and spent 90 days in neonatal intensive care before he was able to go home. His parents found out he had Down’s syndrome during this time and they received one of our new baby gift boxes in hosptial.

Mum, Kirsty says ‘Down’s syndrome North East is a charity really close to our hearts. When we got Marco’s diagnosis of Down syndrome, the gift box we received in neonatal helped me in so many ways to understand everything I was feeling was ok and life will be OK. ‘

Now at 20 months old, Marco is already a regular at lots of DSNE events, including parties, swimming and sensory room visits, thanks to Kirsty and dad, Michael bringing him along with his sister, Ivy-Rae. He has even helped to deliver some DSNE baby boxes to the RVI maternity unit in Newcastle!

Marco has already battled lots of health difficulties in his short life so far, but everyone who knows him knows what a brave fighter he is. Despite all the challenges she faces caring for Marco, Kirsty is also keen to meet up with and support other new parents. Marco’s wider family have already done a great deal for DSNE in a short amount of time to help raise funds. Marco’s uncle works for a company called Technip who donated £1000, grandma Maureen has donated several hundred pounds from Body Shop sales and fundraising events. Most recently, grandad Derek has researched and written a book about the Sunderland shipyards entitled The Shipyard Lads, proceeds from which go to DSNE.

Jonathan Lowes

Jonathan is 35 and has been an enthusiastic member of Down’s Syndrome North East for many years.

He leads a very busy life. When asked what he likes doing with DSNE Jonathan says, ‘I can’t name them, there’s loads of things I like doing.’

Jonathan is a passionate supporter of Newcastle United and is a season ticket holder. He also follows a local football team.

He and his girlfriend of seven years Stephanie enjoy going out for meals and doing things together. Here they are at the DSNE ball.

Family is important to Jonathan. He lives at home with his mum and dad. Wednesdays are very special for Jonathan as this is when he visits his gran. He loves cooking a meal with her and then watching a film together.

Over the years, Jonathan and his family have raised funds in several ways, but last year he and his sister Ellie ran the GNR 5K run and raised even more money for DSNE.

Jonathan has worked for many years, and he has recently got a new job working for Amazon. His boss is very pleased with him, especially as he is not only meeting but passing, targets set for him.

A new favourite of Jonathan’s is Center Parcs. Last year he went there for a long weekend with his P.A., and his friend Paul with his P.A. Jonathan says they had a great time and he can’t wait to return.

Work Fit is a DSA scheme designed to increase opportunities for people with Down’s syndrome to access employment. Work Fit support the person looking for work by helping them prepare for interview and support the employer by providing training and understanding of DS. Work Fit encourages employers to appoint a ‘Buddy’ to support the person throughout their working hours

Matthew has worked at CAV Ice Protection in Consett since 2021.

He works 12 hours a week as a production operator responsible for sanding down and cleaning parts that are used for de-icing aeroplane wings. He has a quality control stamp and also inspects the parts.

Craig has worked at MacDonalds for 3 years.

He cleans tables and chairs with colour coded cloths, checks toilets, and empties bins. He enjoys work and interacts well with children and customers.

His Buddy has got him extra hours as he is so reliable.

There are other adults with Down’s syndrome who also have jobs. Adam works at Dunelm, Katherine works at M&S, Jackie works in a hairdresser’s, Philip at The QE hospital, Sean at the Freeman Hospital and Jonathan at Amazon.

It is wonderful to see how proud they all are of their jobs and how opportunities are becoming more available.

We started our playgroup, Three 21, back in February 2022, for our youngest members with their siblings and parents.

Each month, we come together to play, learn and socialise. It’s not just about the toys and the tumbling for little ones—it’s a place where parents can connect, share their journeys, and find answers to the parenting puzzles we all face.

We have a fantastic team of DSNE volunteers who create a welcoming and warm environment for all. Whether it’s your first time joining or you’re a seasoned attendee, there’s always a new friend to meet and a new story to share.

Three 21 is more than just a playgroup; it’s where friendships are being made. It’s about support, smiles, biscuits, and messy play!

So, if you’re looking for a place where your little ones can play and you can chat with others, come along to our next Three 21 meet-up. They run on the third Saturday of each month in Winlaton. We’re excited to see both new and familiar faces!

Here’s to continuing our journey of support, friendship, and shared experiences in the years to come!

As many members will be aware DSNE send birthday cards to every adult and child member on their birthday. This is a personal message to wish a happy birthday. Over the years we have had a number of volunteers who pick out and hand write the birthday cards and ensure they are delivered in a timely manner so they land on peoples door mats in time for birthdays. You can image each month there is a large number of cards to write out due to out increasing membership. We are grateful to the volunteers over the years who have done this job and make sure birthdays are acknowledged and make being part of DSNE personal.