The Arthrogryposis Group's Events
Throughout the year, we organize a diverse range of events to cater to various interests. These events encompass local meet-ups, fundraisers, and our eagerly anticipated annual family weekend.
Our family weekend serves as the highlight of our year, bringing together all members of our AMC community. It provides a valuable opportunity for our members to connect with others who share similar experiences. We arrange for guest speakers to join us, sharing insights about their services or products, allowing our members to engage in conversations and learn more about what they offer. This event also facilitates interactions among TAG members with AMC, fostering a sense of camaraderie. To ensure convenience for all attendees, we schedule our Annual General Meeting (AGM) the day after the family weekend, minimizing costs and travel requirements.
The success of our previous family weekend was truly remarkable, leaving us delighted with the overwhelmingly positive feedback received. We have taken those valuable insights into careful consideration as we diligently plan this year’s event. Please mark your calendars with the following details for this highly anticipated occasion.
If you would like to make a suggestion for an event or want to fundraise for TAG or know someone who does. Just drop us a line and let us know.
Family Weekend 2023 Details
VENUE: Double Tree by Hilton, Paradise Way, Walsgrave Triangle, Coventry, CV2 2ST
DATE: Saturday 21st October 2023
TIME: 10:00 am
Prices: Booking is now closed!
Friday night (20th October 2023) b&b prices are:
Family (2 adults and 1 child under 12 on a Z bed): £101.00
Saturday night (21st October 2023) b&b prices are:
Family (2 adults and 1 child under 12 on a Z bed): £138.00
Child Under 12: FREE
If you are attending for the day only, then a £10 deposit per person is required. This will be refunded on the day, once you have collected your welcome pack.
Child under 12: FREE
Babysitter for Saturday Night
7pm – 10pm = £36
7pm – 11pm = £48
7pm – 12am = £60
Welcome: 10.00am – 10.30am
Activity Room: 10.00am – 5.15pm
Amy – Driving Mobility: 10.30am – 11.30am
BREAK: 11.30am – 11.45am
Sarah Ford: 11.45am – 12.45pm
LUNCH: 12.45pm – 1.45 pm
Omeo: 1.45pm – 2.45pm
BREAK: 2.45pm – 3.00pm
Hayley at Exoskeleton: 3.00pm – 4.00pm
Nutty Knots: 3.00pm – 5.00pm
BREAK: 4.00pm – 4.15pm
Sarah Rayment: 4.15pm – 5.15pm
DINNER 6.15pm – 12.00am
ENTERTAINMENT, RAFFLE & AWARD PRESENTATION:
Amy works for Driving Mobility – They can help you with assisted driving, accessibility, and independent living. They can also explain about filling out the application forms.
Sarah Ford – Transition to adult services at Oswestry Hospital. Sarah will discuss the process of a child transitioning from children’s services to adult’s services.
Omni Wheelchair – The world’s only hands free, self-balancing active power chair. The Omeo’s powerful two-wheeled, self-balancing platform allows you to interact with the world in a new way. With balance-based movements, Omeo enables you to express your individuality in a way no other mobility device allows.
Hayley Philippault at Exoskeleton – Hayley is the Technology Projects Manager at Duchenne UK and currently leads on the SMART Suit and Dream Wheelchair projects. Hayley has designed and produced numerous assistive products currently on the market and is committed to using design to overcome barriers and improve lives. Duchenne UK has developed a ‘smart suit’ which also brings hope to those with spinal muscular atrophy, Duchenne MD and SMA – it is set to be completed by December, when it will be tested by a panel of youngsters living with DMD and SMA. Worn like a slimline backpack, the suit is powered by tiny motors and rechargeable batteries and utilises ‘twisted string actuator’ technology, patented by Stanford University’s research unit, SRI International. It mimics muscles by using a thread around the arm that contracts, which, with the motors, lifts a limb after the user activates a control linked to their index finger. Duchenne UK hopes the device can be made available in the mainstream market by 2025 and it is also said to have ‘huge potential’ for helping stroke patients, and those with multiple sclerosis and motor neurone disease.
Nutty Knots – One of our new members, Jeff Bathurst has kindly agreed to hold an activity showing members how to make keyrings out of paracord. Paracord is parachute cord, which is a lightweight nylon kernmantle rope originally used in the suspension lines of parachutes. Members can then take their keyrings home with them.
Sarah Rayment – Our trustee Sarah is an experienced primary teacher of 11 years. She has always been passionate about SEND provision in schools and ensuring pupils get the best support possible. She believes that both pupils and families should feel supported through what can sometimes be a complex system. In 2022 she started training as an operational SENDCo and in September 2023 she starts a new role as full time SENDCo over two schools. During this workshop Sarah will provide parents with advice on navigating the SEND system in education as well as providing the opportunity for parents to share their experiences and ask for advice.
This year we will be providing an activity room, where board and card games, paints, paper, colouring books, colouring pencils, and different sports games will be provided. The Nutty Knots activity will also take place in this room. This will allow you to socialise, meet new friends, catch up with old ones and have lots of fun.
The amazing Sweetheart Nannies will be back with their crèche on the Saturday and Sunday day and babysitters for the Saturday night, giving you the chance to relax, socialise and have lots of fun on the karaoke, and dancing along to the music provided by Nikkita who DJ’d for us the last couple of years.
This year we have raffle prizes to tempt you all, and we will seek to keep adding to the list..
Our raffle prizes include some extra special offers from our very generous donors:
- A voucher for Experience Days to the value of £50: there are so many experiences available – some that can be done from home if travel is an obstacle and there is plenty for the more adventurous! Please check out what is on offer via this link: www.experiencedays.co.uk
- An amazing pizza axe from Raven Forge.
- Ocado has offered one lucky winner a £50 voucher.
- Freddie’s Flowers has also offered 2 months of beautiful post-box flowers delivered to your door – you choose when to have them: that is a £50 voucher for one lucky winner.
- Gregg’s has donated a £10 voucher.
- Bottles of wine and a bottle of whisky, paintings from TAG trustee Charmaine, and other items.
So… if anyone not attending the TAG weekend, whether that be a TAG member or a family member / friend who would like to enter the raffle they can email Charmaine directly to purchase tickets using Charmaine_rodwell@arthrogryposis.onmicrosoft.com. Payment can be made to TAG’s bank account and Charmaine will email you with your ticket details and with a screenshot to back up.
Because of postage restrictions we cannot post alcohol or perishables so anyone not in attendance or who cannot collect from someone attending will be eligible for the other prizes on offer.
Anyone who has something to offer as a raffle prize or knows of a company who would donate a prize, please also contact Charmaine on the email above.
Tickets are £2 for a single ticket or £8 for 5
The draw will be live on the Saturday night as always, before the DJ and the dodgy dancing….
AGM Meeting (Members Only) 16 years +
VENUE: Cantebury Suite, Conference Floor, Double Tree by Hilton, Paradise Way, Walsgrave, Triangle, Coventry, CV2 2SR
DATE: Sunday 22nd October 2023
April 2023 – Easter Bunny Grotto
Donna and Chris organized a captivating Easter Bunny Grotto at a local family pub during the Easter season to raise funds for TAG. With their creative talents, they crafted and adorned a festive grotto, assuming the role of the Easter Bunny throughout the Easter week in April. Visitors were encouraged to contribute donations in exchange for memorable pictures with the Easter Bunny. Through these endeavors, Donna and Chris collected a commendable sum of £107.11 in generous donations. We extend our heartfelt gratitude and congratulations to both of them for their outstanding dedication and success.
December 2022 – Santa’s Grotto
Donna and Chris organized a captivating Santa’s Grotto at a local family pub during the Christmas season to raise funds for TAG. With their creative talents, they crafted and adorned a festive grotto, assuming the roles of Santa and Mrs. Claus throughout the entire month of December. Visitors were encouraged to contribute donations in exchange for memorable pictures with Santa. Additionally, they participated in four delightful breakfast events with Santa, further bolstering their fundraising efforts. Through these endeavors, Donna and Chris collected a commendable sum of £136.45 in generous donations. Furthermore, they organized an engaging raffle on New Year’s Eve, where our members eagerly purchased tickets and emerged as lucky prize winners. This raffle successfully raised £250. In total, Donna and Chris accomplished a remarkable achievement, raising a combined total of £386.45 through their exceptional Christmas fundraising efforts. We extend our heartfelt gratitude and congratulations to both of them for their outstanding dedication and success.
At these events, we are able to get together, swap stories, chat and most importantly show to our youngest members that they are not the only person in the world with AMC and it does not have to prohibit them!
Every year we aim to put on a few regional events for everyone to get together, usually during Summer to take advantage of the great British weather, and always in different parts of the country to allow as many people as possible to get together.
Please see details below:
DATE: Monday 7th August
VENUE: Pontypridd Park