Events Archive
RideLondon returns in 2023
Ride London & raise money for Max Appeal.
Max Appeal has secured 5 spaced. We if you could please raise a minimum of £500 in donations. Max Appeal can supply you with a cycle shirt and other fund raising merchandise. Please contact paul@maxappeal.org.uk to register your interest.
RideLondon, the world’s greatest festival of cycling, will return in 2023. It will be the 10th anniversary of the hugely popular event, which was established by the Mayor of London in 2013 as an Olympic legacy event from the 2012 London Games.
A new one-year agreement with Essex County Council brings RideLondon back to the county on Sunday 28 May following the successful first year of the partnership in 2022.
The festival will feature the iconic RideLondon-Essex 100-mile challenge, along with the RideLondon-Essex 60 and 30-mile rides and the ever-popular RideLondon FreeCycle, which gives riders of all ages and abilities a rare chance to cycle on traffic-free roads in central London.
More than 22,000 participants took part in the RideLondon-Essex 100, 60 and 30-mile rides, which started in central London, headed out to Essex and then returned for a finish at Tower Bridge, while many thousands more took part in RideLondon FreeCycle in the city.
https://www.ridelondon.co.uk/news-and-media/latest-news/RideLondon-Essex-returns-in-2023
Edinburgh Marathon Festival
Edinburgh Marathon Festival.
9 different events from 1km to 26.2miles.
Why not run (or walk, jog hop) and raise fund for Max Appeal. All different ages and different levels fitness.
Cranham Camp 2023
Cranham Scout Centre, Cranham, Gloucestershire, GL4 8HP
Max Appeal invites you to attend a youth activity weekend based in the beautiful Cotswold Hills to help young people relax and enjoy some time together and it is an opportunity to meet other children and young people affected by 22q. Suitable for 7 years upwards, accompanied by parent/carer.
The theme of the weekend is building confidence and self-esteem, working in teams and having fun. We are providing activities for all abilities in a safe environment. Activities include; archery, shooting, grass sledging, traverse wall, explorers walk, team games, exploring, bush craft, dam building and challenge course.
A small charge for each child £55 and accompanying parent £10
Click here for booking form : Cranham 2023 Booking Form
Enquiries: Claire@maxappeal.org.uk
22q At The Zoo 2023
22Q At The Zoo is a world wide event organized each year since 2011.
22q families gather at different zoo’s around the world. Max Appeal will be hosting one this year at the Birmingham Wildlife Conservation park in the UK.
This very special event gives families touched by 22q issues a chance to socialize, network and raise the public profile of the common but poorly recognized conditions of the 22q syndrome.
This year we have decided to hold one main Max Appeal 22q at the Zoo event, at
Birmingham Wildlife Conservation Park
Birmingham Wildlife Conservation Park is home to a unique collection of animals from across the world, including Red Pandas, lemurs, reptiles, meerkats, otters, birds, wallabies and a large collection of monkeys.
Some of our animals are endangered in the wild and we play an important role their species’ conservation.
You can chose to book your own tickets, or we can prebook them for you using the attached booking form on the link below:
Carers free whilst supporting the person you care for with DLA proof.
Adults £7.50
Senior citizens, students, and Passport to Leisure holders £5.70
Children aged 3 to 15 £3.75
Children under 3 Free
Family Day Ticket (2 adults and max 3 children aged 3 to 15 years) £24.50
Family Day Ticket (1 adult and max 3 children aged 3 to 15 years) £17.50
There is parking on site and around the area.
Red Max Appeal T shirt’s can also be purchased using this link:
As always, you can also organise your own venue if it’s more suitable to your needs and location. We can help promote and advertise this for you.
Any queries, please email me at steph@maxappeal.org.uk
Children’s Heart Federation Family day at Whitemoor Lakes May 20th 2023
Do you know a child with a heart condition who loves adventure and challenges?
Then they are invited to attend the CHF activity day on May 20th at Whitemoor Lakes, near Lichfield and can bring along the whole family, (two adult parent or carers plus siblings).
There will be a range of indoor and outdoor activities during the course of the day and lunch and refreshments will be provided (dietary needs will be catered for).
Activities planned will include archery, circus skills, canoeing, abseiling plus a challenge course. Children over five years of age can join in the challenges and there will be special activities arranged for those under-fives.
There will be opportunity to meet some of the CHF team, find out a bit more about what we do and how we can help and for parents and carers to meet each other during the breaks and over lunch.
Places are limited so book early. If you have any questions please contact joanna@chfed.org.uk or phone 0300 561 0065.
Max Appeal over 18's Break
Max Appeal is looking to organise a mid-week break for those affected by 22q11.2 Syndromes, who are 18 years and over
at The Manor House Hotel
Fowley Cross, Okehampton, Devon. EX20 4NA
Manor & Ashbury Resorts (manorandashburyresorts.co.uk)
Staying at the Manor House Hotel there are range of activities available for use by guests. Prices include breakfast, lunch and dinner and access to all sports and leisure facilities. Additional craft classes are available at a range of prices starting from around £3.50 for ie card making, £9.50 ie glass fusion up to £14.95 for ie Silver clay per class. These would be bookable on arrival and details of the range of classes can be found on their website.
For us to benefit from their group booking rates we would need a party of at least 12 people.
We are looking at a mid week break arriving on 15th May for 3 nights.
The prices are as follows;
Double or twin rooms £513.00
Triple rooms £731.04
Single room £307.80.
If you needed to insure against cancellation you would need to arrange this yourself.
Please note, an additional charge of £9.50 would be charged for lunch on the day of arrival or on the day of departure if required. If guests wish to stay for the day on departure day they can continue to use the facilities.
If you are interested in coming along, please email claire@maxappeal.org.uk as soon as possible to discuss your requirements.
At the moment, no rooms are reserved. We would need to make reservations fairly quickly to secure the rooms and payment would be required.
Great Birmingham Run
The AJ Bell Great Birmingham Run is the Midlands’ biggest and best running event, with thousands of Brummie runners taking to the streets every year to challenge themselves and raise cash for charity. There’s everything you’d expect from a Great Run – notorious start line hype, top on-route entertainment and an event village that feels more like an after party – but the carnival atmosphere and the passion and spirit of the runners is all Birmingham. Expect inspiring sights, iconic landmarks and incredible support all along the 10k and half marathon route.
Great Birmingham Run entries are open to runners aged 15+ (10k) and 17+ (Half marathon) on the day of the event.
Click here for full information.
Entry price Includes booking fee (£2 per entry).
Max Appeal Family Quiz
Max Appeal Online Family quiz. If you haven't played before the more the merrier, the quiz is about 45 minutes long and is suitable for all ages, it's a great opportunity for a catch up with plenty of laughs - email mark@maxappeal.org.uk for a Zoom invite
Max Appeal Special 22q Awareness Sunday Quiz
Sunday from 19:00 -20:00
Duration: 1 hr
Max Appeal Family quiz. If you haven't played before the more the merrier, the quiz is about 45 minutes long and is suitable for all ages, it's a great opportunity for a catch up with plenty of laughs - email mark@maxappeal.org.uk for a Zoom invite.
Max Appeal Sunday Quiz
Sunday from 19:00 -20:00
Duration: 1 hr
Max Appeal Family quiz. If you haven't played before the more the merrier, the quiz is about 45 minutes long and is suitable for all ages, it's a great opportunity for a catch up with plenty of laughs - email mark@maxappeal.org.uk for a Zoom invite.
Yorkshire Marathon
Why not run The Yorkshire Marathon in aid of Max Appeal.
The Yorkshire Marathon has been a monster success since day one. In many ways it’s the jewel in the White Rose County's sporting crown.
We like to think every element of The Yorkshire Marathon is charged with Yorkshire Spirit. Since the inaugural event in 2013, the event has got bigger and bigger. Every year, thousands of runners of all abilities take to its truly breathtaking course.
But you’ll never be far from the locals who will be out in force to cheer you along. The event is now such a global draw that spectators come from across the world to be part of the experience and to add their support.
As you head along University Road to the finish, remember; it’s tradition to "do the Y" as you cross the line. Yorkshire, Yorkshire, Yorkshire!
Whether you’re aiming to smash your PB or just looking to cross the finish line, the Yorkshire Marathon is the perfect experience for beginners and experienced athletes alike.
https://www.runforall.com/events/marathon/yorkshire-marathon
TCS London Marathon 2022
Join #maxappeal and run in one of the most respected marathons of all time.
The TCS London Marathon 2022 is THE event of the year.
We’re incredibly excited to be able to offer two runners the opportunity to take part this autumn, to help support and improve lives of 22q11 families.
Please email paul@maxappeal.org.uk to register your interest.
Great North Run
Max Appeal has secured 35 guaranteed charity places for next years Great North Run, to be held on Sunday 11th September. To secure your place email paul@maxappeal.org.uk for an entry form.
24th SSBP International Research Symposium 2022: Please Save the Date!
8-10th September 2022, Oslo, Norway
Best wishes for 2022 from the SSBP!
As everyone is busy putting meetings and travel into diaries, we are delighted to let you know that the 24th SSBP Meeting will be held in the fabulous city of Oslo in Norway. Oslo is the winner of the European Green Capital Award 2019, and is a true cosmopolitan hub with an abundance of world-class architecture, museums, restaurants and shopping and yet it still manages to maintain a refreshing closeness to nature that few other capital cities can match.
The conference theme is "Developmental disorders and behavioural phenotypes across the lifespan". The Educational Day will be on the 8th September 2022 and the Research Symposium will be held on the 9th and 10th September 2022.
The Kiltwalk
With five Kiltwalk dates and locations for your diary, we have something for everyone in 2022!
Join us on a Kiltwalk, raise funds for a charity close to your heart and Sir Tom Hunter and The Hunter Foundation will top up all funds raised by 50%*.
Dates/Locations
Glasgow - 24 April
Aberdeen - 29 May
Dundee - 21 August
Edinburgh - 18 September
Scotland’s Virtual Kiltwalk 7 - 9 October
Registration is now open, so sign up and join us!
The 12th Biennial International 22q11.2 Meeting
The 12th Biennial International 22q11.2 Meeting will take place in Croatia as follows:
Family Meeting – June 26th (Sunday) to 28th (Tuesday)
IBBC and Network of the Americas – June 28th (Tuesday)
Professional Meeting – June 29th (Wednesday) to July 1st (Friday)
The conference will take place in-person.
https://www.22qsociety.org/news/content.asp?ni=311
The conference will take place in-person at Le Meridien Lav Hotel in Split, Croatia.
If you have any questions, please contact the conference planning officers at 22qmeeting@chop.edu.
Ride London
Saddle up and join us for a brand new 100-mile ride!
Only 3 Spaces left now Contact paul@maxappeal.org.uk to register for a place.
Max Appeal have secured 5 places.
RideLondon – the world’s greatest festival of cycling – returns on Sunday 29 May 2022, with a new format, exciting new routes and a new partnership with Essex County Council.
At the heart of this celebration of all things cycling is the RideLondon-Essex 100 challenge – a unique opportunity to ride 100 miles on traffic-free roads through the heart of London and neighbouring Essex.
The event will start on Victoria Embankment and finish to rapturous applause at Tower Bridge, with 65 miles through some of Essex’s most beautiful countryside and villages in between. The full route will be announced in early 2022.
Please email paul@maxappeal.org.uk for further information.
22q at the zoo. The 12th Annual 22q at the Zoo Event Sunday, May 22nd, 2022
Dear Max Appeal member
It seems like forever since we were last able to come together as one big family, on Sunday 22nd May 2022 we will once again be able to join in with organisations around the globe to celebrate.
We have made the decision that due to Covid-19 we need to take as many precautions as possible to keep you all safe, with this in the mind the board of trustees has decided that smaller, more personal venues will be more suitable, such as petting zoo’s, farms, wild life parks.
Previously we have attended large zoo’s at a small number of central locations, this year we want to commit to more locations to help minimise travel for everyone, for us to achieve this we need your help, if any member is able to volunteer to be the host for a local venue please get in touch via info@maxappeal.org.uk
Max Appeal Red Tshirts are now available to order: Prices vary from £11 to £13 depending on size & P&P
Order form closed
Hosted Zoo Locations:
Camperdown Zoo Hosted by Danielle Peetrie
https://www.camperdownwildlifecentre.co.uk/content/visitor-information
Camperdown Wildlife Centre, Camperdown Country Park, Coupar Angus Road, Dundee DD2 4TF Telephone 01382 431811
Hesketh Farm Park Hosted by Clover Swale
https://www.heskethfarmpark.co.uk/
Hesketh Farm Park, Bolton Abbey, Skipton, North Yorkshire BD23 6HA
Matlock Farm Hosted by Martin Kennedy
https://matlockfarmpark.co.uk/plan-your-day/
Jaggers Lane, Near Two Dales, Matlock, DE4 5LH
Battersea zoo Hosted by Carri Anne H
https://batterseaparkzoo.co.uk/
Chelsea Bridge Gate Battersea London SW11 4NJ
Shepreth Wildlife park Hosted by Mark Tripp
https://sheprethwildlifepark.co.uk/
Station Road Shepreth Nr. Royston Herts SG8 6PZ
Blackberry Farm Park hosted by Mandy Sanderson
https://blackberry-farm.co.uk/
Blackberry Farm Park, Whitesmith, East Sussex, BN8 6JD
Hosting is a very rewarding experience, and you can help play a role in bringing members back together after what has been a very tough couple of years for us all.
Stay safe and we look forward to meeting friends both new and old on the 22nd May
Mark Tripp Trustee
22Q At The Zoo is a world wide event organized each year since 2011.
22q families gather at different zoo’s around the world. Max Appeal will hopefully be hosting several across the UK.
This very special event gives families touched by 22q issues a chance to socialize, network and raise the public profile of the common but poorly recognized conditions of the 22q syndrome.
22q11 syndrome All-party Parliamentary group will be meeting 11th May 2022 for an Annual General Meeting.
The 22q11 syndrome All-party Parliamentary group will be meeting 11th May 2022 for an Annual General Meeting. Please ask your MP to attend and join the APPG. Write to them or email them. You can find their contact details here: https://www.parliament.uk/business/commons/
And this is what you need to say:
Your name and address:
To:
Dear
All-Party Parliamentary Group for 22q11 Syndrome – AGM – Wednesday 11th May 2022
I live in your constituency and I would ask you to support and join the All-Party Parliamentary Group for 22q11 Syndrome because a close member of my family is affected by this common lifelong genetic condition and awareness needs to be firmly on the agenda of decision makers and influencers in the UK.
22q11 Syndrome is estimated to affect at least 1 in 2,000 people in the UK but is still widely unrecognised; many people go undiagnosed and most families struggle to access appropriate care from services including medical, educational, social and securing appropriate employment.
Suzanne Webb MP and Chairman of the of the 22q11 Syndromes APPG will hold an AGM on Wednesday 11th May at 10.30am, room W3 Westminster Palace, and would welcome you to join the APPG. There will also be a drop-in session at Portcullis House in room Q from 1.15 – 2.15pm.
You can find out about 22q11 Syndrome and the people it affects by visiting the Max Appeal website at www.maxappeal.org.uk or scanning this qr code:
I hope you are able to attend the 22q11 Syndrome APPG AGM and drop in session. I look forward to hearing from you.
Please contact julie@maxappeal.org.uk for any enquiries.
Yours sincerely,
Cranham Camp - Booking Closed. Fully booked
A camp experience with Max Appeal families.
Join us for a weekend full of fun activities for our outdoor Max Appeal camp.
29th April -2nd May, 2022
Cranham Scout Centre, Cranham, Gloucestershire, GL4 8HP
Max Appeal invites you to attend a youth activity weekend based in the beautiful Cotswold Hills to help young people relax and enjoy some time together and it is an opportunity to meet other children and young people affected by 22q. Suitable for 7 years upwards, accompanied by parent/carer.
The theme of the weekend is building confidence and self-esteem, working in teams and having fun. We are providing activities for all abilities in a safe environment. Activities include; archery, shooting, grass sledging, traverse wall, explorers walk, team games, exploring, bush craft, dam building and challenge course.
Arrival from 4.00pm Friday, finish Monday lunchtime.
A youth activity weekend for 7 years & upwards based in the beautiful Cotswold Hills to help the young people relax and enjoy some time together and it is an opportunity to meet other children and young people affected by 22q.
Cost: £45
The theme of the weekend is building confidence and self-esteem, working in teams and having fun. We are providing activities for all abilities in a safe environment. Activities include; archery, shelter building, out door cooking, grass sledging, traverse wall, team games, dam building, Explorers walk, air riffles and challenge course.
There will be an opportunity for parents /carers to join the evening BBQ, the cost is £5.00 per adult.
Note:
Bookings close 14th April, 2022, or sooner if camp full.
When booking completed please complete medical form and return at least one week before camp (22nd April) to Claire Hennessey at: Max Appeal Coombe Lodge, Blagdon, Bristol, BS40 7RG
Age group change to 18 +
Please email us at info@maxappeal.org.uk if you have any questions.
Kew The Run Half & 10k Marathon
The inaugural timeoutdoors Kew 10K and Half Marathon will start and finish at the Royal Botanical Gardens, Kew on the 9th/10th April, 2022. Every runner will receive a fantastic medal, free entry into Kew Gardens for spectators and a technical running t-shirt (male/female sizes).
https://www.timeoutdoors.com/events/runs/Kew-The-Run-Half-Marathon-charity-places
https://www.timeoutdoors.com/events/runs/Kew-The-Run-10K-charity-places
After the race, runners and spectators can celebrate in a post-race family picnic inside the gardens. The 10K course is all inside Kew Gardens, with the half marathon starting and finishing in Kew whilst taking on a flat scenic tour of the leafy London Borough of Richmond via Richmond Riverside and Ham House.
Wills, Trusts and setting up legal protections for disabled adults and minors. Webinar Thursday 20th January, 2022 7.00- 7.45pm
Victoria Armour is an Associate Solicitor at VP Legal Solicitor.
Victoria specialises in Private Client work. She is particularly interested in protecting the needs of the elderly, disabled and vulnerable people.
Please email info@maxappeal.org.uk to register your interest. We will send invites for the Zoom link to join the webinar nearer the date.
22q11 Awareness Day
Europe lights up red
22q11 day
November 22nd is the International 22q11 Day, a European movement to raise awareness about 22q11 by illuminating many buildings in red across Europe.
Why raise awareness about it?
The cheer diversity of the symptoms of 22q11 patients makes a diagnosis very difficult. In fact, 50% of 22q11 patients are never diagnosed. Yet, an early diagnosis of 22q11 can lead to a much better life for affected individuals as earlier treatments of symptoms can curtail their severity. Besides, early diagnosis allows parents to better prepare the arrival of their child, it helps health professionals to better adapt their treatments and educators to better adapt the educational environment. Raising awareness with the public will thus improve the diagnosis and treatment of the disease.
Do you have a contact or work for a company who would be interested in lighting up their building for 22q11 awareness day? Please email them or ask us to contact them on your behalf. Please email us at info@maxappeal.org.uk
4th European Conference - Berlin
The Berlin conference will take place on 20&21/11/2021 , in both live and virtual way.
To register: https://events.22q-info.de/22q11-berlin-2021-de
The price will be the same for virtual and live attendance. We obviously encourage live presence for the people who can make it.
The conference will take place in English and will be translated in German and French. If another association want to organise simultaneous translation, it is also possible (infrastructure costs born by the German association and interprets costs born by the local association)
The program is in attachment. Thanks to Maude and the scientific committee for this impressive work! We will have a very interesting conference!
Max Appeal Virtual Zoom session on genetics and pre-implantation genetic diagnosis (PGD).
Presentation and Question & Answer session by Eshika Haque
When: Wednesday 22nd September, 2021. 7.00pm – 7.45pm
Learn more about PGD, the PGD clinic at Guys and St Thomas’ Hospital, London.
Preimplantation genetic diagnosis (PGD) is available to couples who are at risk of having a child with a specific genetic or chromosome.
Eshika Haque is a registered genetic counsellor who has worked in the field of genetics for over eight years. She did her genetic counselling training at the clinical genetic centre at Yorkhill Hospital in Glasgow before moving to Guy's Hospital in 2010 to take up a permanent position.
She works in general, cancer, and prenatal genetics. She has a variety of specialist interests including metabolic and mitochondrial genetics, cancer genetics, Tay Sachs screening and pre-implantation Genetic diagnosis (PGD).
Please register your interest in attending by emailing info@maxappeal.org.uk
Great North Run
Max Appeal have a number of guaranteed places still available for the Great North Run 2021
The event is scheduled to take place on Sunday 12th September, the entry fee is £56.00, sponsorship target is £200.00.
Max Appeal running vests will be supplied.
Please email paul@maxappeal.org.uk to register your interest or if you have any queries.
Cannon Hill Picnic Max Appeal Family Meetup
Meet up with other Max Appeal families at Cannon Hill Park for a picnic and a chance to share stories and support.
Meet by the bridge by the Midlands Art Centre, carpark opposite Edgbaston Cricket Ground.
Paul and Julie will be there to meet you from 11am with picnic lunch at 1pm.
email us at info@maxappeal.org.uk to register your interest or if you need further information
Scarborough Beach Day
Max Appeal family meet up on the Beach at North Bay Scarborough. Everyone welcome and the event shall be held in line with Government Covid Guideline that allow such events to happen. More information to follow.
Or Please email us at info@maxappeal.org.uk for further information.
Barry Island Max Appeal Family Meet Up
Join us for a day in Barry Island! August 10th 10.30 Come along to meet other families in our 22q community and of course enjoy the lovely Barrybados seaside!
ULTRA LONDON Saturday 31 July 2021
· The event follows the Capital Ring footpath, bringing an ultra-running adventure to the London’s doorstep
· The event has two distances, the shorter 27.5k distance and the 55k ultra distance event
· LONDON 27.5 starting in Crystal Palace, the route takes participants through South West London & past locations such as Wimbledon Common, Richmond Park and finishing in Richmond upon Thames
· ULTRA LONDON 55 is the entire South section of the Capital Ring, starting at Woolwich Foot Tunnel (East London) and crossing nine beautiful London Boroughs before the finish line in Richmond upon Thames (West London)
· The event is accessible and open to all, from seasoned ultra-runners, walkers seeking a challenge, or first timers looking to push their limits
· The fully waymarked route follows the Capital Ring, a relatively unknown but spectacular 78-mile public footpath around London on a mix of hidden trails, footpaths, parks, disused railway lines and woodland
· Entries are now open and for a limited time only are available at a special Launch price
· Event website for more information: https://www.ultralondon.co.uk/