DYRK1A  2022 UK Meet Up

DYRK1A 2022 UK Meet Up

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Free

Date and time

Location

Barnstondale Centre

Storeton Lane

Barnston

CH61 1BX

United Kingdom

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Conference Meet Up for people with DYRK1A syndrome and their families. Hear presentations, have informal chats and enjoy the activities!

About this event

The 2022 DYRK1A meet up conference has an emphasis on providing plenty of opportunities for families to have informal discussions, exchange experiences and build up life long support networks. There are also a wide range of activities for the DYRK1A affected individuals and their siblings to enjoy taking part in which will hopefully facilitate them forging friendships and increasing their confidence and self-esteem.

Families are invited to arrive at the venue from 2pm on Friday 29th July when they will be met in the car park/at the entrance and directed to their allocated accommodation.

Depending on the weather we might have some mini family tournaments of table tennis, rounders and other games or have some indoor fun with snooker/pool, darts or bingo.

Pizzas (or Pasta Bolognese as an alternative) for dinner will be at around 5:30pm and we'll have a family movie on a big screen in the conference room afterwards.

The conference will start straight after breakfast on Saturday 30th July 2022. The agenda isn't quite finalised but we expect to have a number of contributions from professionals relevant to DYRK1A over the day with opportunity to ask questions and provide input to discussions arising. Please bring your own pen and paper and/or electronic device for any personal notes you may wish to make. The conference room will be laid out with small tables and chairs and people can sit anywhere to suit them.

It is hoped the children and siblings will be able to enjoy all the fun facilities across the venue whilst the conference is on and we're planning on organising volunteer helpers to supervise small groups and alert parents to any issues arising with their child. However, it's an informal atmosphere so absolutely fine if they want to join you in the conference room as and when. We'll schedule in a couple of refreshment breaks and a lunch period (baguette sandwich or cottage pie) when all the children and siblings will join up with their families. Please note the volunteer helpers will only be available to supervise during the agenda items on the Saturday. We will undertake Disclosure and Barring Service (DBS) checks on the volunteers.

We're planning to have a short break after the conference before everyone meeting back up for a BBQ (or macaroni cheese as an alternative) for dinner and a family campfire gathering.

After breakfast and vacating the rooms on the Sunday morning the children who have booked on to the optional instructor led activities will have opportunity to try out a range of what is on offer with their parents watching and encouraging. The venue's playground and other facilities will be available for the remaining families to enjoy together before we all meet back up for a Sunday roast chicken dinner. Everyone departing by 2pm latest.

Bedding will be provided by the venue but please bring your own towels. As previously advised the accommodation is very basic and tailored to suit parties of school children usually so you might want to consider that there isn't much storage provided in each room. Additionally there might be extra beds in the room; these cannot be removed.

The 3 accommodation buildings each have a shared mini kitchen area. The mini kitchens have a fridge, kettle, microwave and toaster. All meals are organised by the venue and will be taken in the dining area next to the conference room or you can take your food outside to have on the picnic benches. We'll also stock each mini kitchen with tea, coffee, hot chocolate, milk, diluting juice, biscuits, bread, margarine and jam in case you want something to eat or drink outside of the meal times. You're welcome to bring any other items you might want and store them in one of the mini kitchens.

The UK Charity is covering the costs of the Saturday for the immediate family members. Families are required to pay the balance of the total costs and any costs for wider family members to the Charity by 1st June.

Please note, the Barnstondale Centre hold Public Liability insurance but there is no additional insurance cover purchased by the UK DYRK1A Charity and families should take up their own holiday type policy if they wish to do so.

The individual rooms are lockable from the inside only so it is advised that everyone limits having valuable items there as much as they're able to and consider keeping such items on their person when they're not in the room. There'll be a Night Manager on site out of hours.

Please join and follow the Charities Facebook Page - "DYRK1A UK Community" and have a look at all the ways you can help support fundraising for this and future events including ordering the handmade Greeting Cards; adding to the JustGiving campaign; picking the charity to benefit from online orders through Amazon Smile and EasyFundraising; and nominating the Charity for the "Movement for Good" awards.

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