Hello, I am Florence Garrett and I am the Chair for the National Advisory Group. This is my blog about the first ever Advisory Group summit for adults with Down syndrome. It was hosted by my employer A&O Shearman in central London on 27.03.25. The Summit was held here because I work in their catering department.
My boss is called David Campbell and he was proud to host our group for our very first Summit. We had lots of people like MPs and Down syndrome groups come to the Summit. It went really well and everyone had a great time. I chaired the day and we had presentations from different people with Down syndrome from across England.
For session 1 we welcomed everyone to the Summit and heard from David Campbell who was our host at A&O.
In session 2 the theme was ‘Our Journey So Far’ the speakers for this were James Langford and Jake Binns. We looked how far we had come and talked about being role models.
Jake:
I was so proud to be asked to present ‘our journey so far’ with James. I practiced my talk beforehand and felt nervous. During my presentation, I felt so happy. We are making a difference, and we are role models. Afterwards, I felt so proud as my family watched me and also very emotional that I was part of the first Summit.
James:
I really enjoyed the Summit and the best part was that I got to do a presentation with my friend Jake. The photos were brilliant – they showed things like the human library, that was a great day because we showed all we have achieved, and showed other great days like the invite to 10 Downing Street. I love being part of the advisory group, I have made a lot of friends and we have such a good time together doing great things for young people with Down syndrome like us. The Summit was a big celebration day, and it was nice for my brother to meet all my nice friends and see how good we all are.
The theme for session 3 was ‘Building Our Voice’ the speakers were James Carter and ED Daly they were talking about working with Integrated Care Boards.
Ed Daly
I was really happy to do my first presentation with slides at the Summit. The auditorium at A&O Shearman was amazing and I felt it brought us all together in a professional way. I enjoyed sharing my story on the work I’m doing with my local ICB in Staffordshire and Stoke-on-Trent. I co-chair a Down Syndrome specific group set up to help the NHS and other services in the region to implement the Down Syndrome Act Guidance. I felt connected to everyone and afterwards I was happy to hear that members were inspired to find their local ICB and work with them to make the Act meaningful and powerful. The atmosphere at the Summit was buzzing with special friendship and a mission to help improve the lives of everyone with Down syndrome.
James Carter
I love the Summit it’s a great way to come together and to change the world.
Session 4 was a workshop called ‘Write Your MP,’ and the speakers were Ted Emrys-Jones and Ned Taylor-Clague. They helped write 27 letters to MPs.
Ted:
I went to London on the train and a bus with my friend David. At the start of the Summit I helped Louise on the signing in desk. Later Ned and I helped people write letters to their MP. It felt good to see my friends working together. The food was good too. I am proud to be a leader of the Cornwall Advisory Group.
Ned:
The Summit in London was so amazing and I really enjoyed presenting with Ted about what we are doing in Cornwall. I felt happy that lots of people wrote to their MPs that day and it is making a difference. I hope there is another Summit next year and I hope that all of us from Cornwall can be there and our MPs too that would be awesome.
We talked about Future Plans in session 5 the speaker was Ben Butcher from the #IchooseBoard in Cheshire.
Ben:
I was really, really proud to be part of the first annual Summit. It was really exciting to meet up with so many people and I made lots of new friends. I was very honoured to be asked to talk about DSC and I hope that together we can make things better for all people with Down syndrome. I think the Advisory Group is amazing and I really want to be a part of helping, encouraging and supporting people with Down syndrome. My mum says I have to stick to my script if I ever get asked again. Thank you for including me.
All day at the Summit Millie Prelogar was our reporter interviewing our members and guests. She did a fantastic job and you can see her interviews with Sir Liam Fox, Andrew Cooper MP and Damien Hinds MP soon!
Millie:
I loved the Summit because we all got to meet up in person and really got to know each other. I didn’t realise everybody is doing so many different things to make their communities better. It was an honour to interview many of the delegates and the video will be a great way to remember everyone.
We had a lovely day creating a wish tree with our future plans and I would like to say thank you to A&O Shearman for hosting the Summit this year!
