Upcoming Events
RAF Museum 22q Family meetup (Hendon, North London)
RAF Museum 22q family meetup, Hendon, North London
Save the date
More information to follow
The 6th European 22q11 Conference
We are pleased to remind you that the next European conference will take place in Brussels on November 22 and 23, 2025.
This conference aims to unite European families, clinicians, scientists, and researchers to share knowledge and expertise about 22q11 syndrome and foster meaningful connections.
The programme for the next European conference is available on our website. It will be updated regularly as new information becomes available.
You'll find all the practical information and the weekend programme in English, French, Dutch, Spanish and Italian.
Parkinson’s Disease and 22q11DS
Save the Date.
Please note time is Central European Summer time.
Speaker: Dr. Erik Boot
Date: February 5, 2026
Time: 20:00–21:30 CET
This webinar will offer an accessible overview of parkinsonism and its connection to 22q11.2 deletion syndrome. Dr. Erik Boot will present current research on the increased risk of movement-related symptoms in individuals with 22q11DS, explore potential signs and long-term health implications, and share practical recommendations to support care strategies.
About the Speaker:
Dr. Erik Boot is a physician specialized in intellectual disability medicine. He works at the multidisciplinary 22q11.2 clinics for adults at ‘s Heeren Loo and Maastricht in the Netherlands. His research focuses on how 22q11.2-related manifestations develop over time and aims to improve the quality of life for adults affected by the syndrome. He is a member of the scientific advisory committee of Stichting Steun 22Q11 and a trustee of the 22q11.2 Society.
Who It’s For
Families and caregivers seeking to better understand the science behind 22q11.2 Deletion Syndrome
Professionals looking to stay informed and connected with the latest developments
Advocates and associations working to improve quality of life across Europe
🎤 What to Expect
A 45-minute presentation by a leading researcher
A live Q&A session via chat
Topics that connect research with real-world challenges and practical recommendations
A welcoming, accessible format hosted on Zoom, scheduled in the evening to accommodate families
Sleep in 22q11.2 Deletion Syndrome: Emerging Evidence and Practical Recommendations
Please note this is Central European Summer Time - Save the Date
Speaker: Dr. Corrado Sandini
Date: May 28, 2026
Time: 20:00–21:30 CET
This webinar will highlight new findings on the role of sleep disturbances—such as obstructive sleep apnea—in contributing to psychological and behavioral challenges in individuals with 22q11DS. The session will explore underlying mechanisms, discuss the downstream consequences of poor sleep, and offer practical guidance for screening and managing sleep disorders based on the latest research.
About the Speaker:
Dr. Corrado Sandini, MD, PhD, is Médecin Chef de Clinique at the Centre de consultation spécialisé en autisme (CCSA), Fondation Pôle Autisme in Geneva. He specializes in neurodevelopmental disorders and leads clinical and research efforts focused on autism and related conditions.
Who It’s For
Families and caregivers seeking to better understand the science behind 22q11.2 Deletion Syndrome
Professionals looking to stay informed and connected with the latest developments
Advocates and associations working to improve quality of life across Europe
🎤 What to Expect
A 45-minute presentation by a leading researcher
A live Q&A session via chat
Topics that connect research with real-world challenges and practical recommendations
A welcoming, accessible format hosted on Zoom, scheduled in the evening to accommodate families
Great North Run 2025
Applications are now closed.
The date for the 2025 run is Sunday 7th September, the entry fee is £25.00 and the minimum sponsorship target is £250.00.
Max Appeal has secured 35 guaranteed charity places for this years Great North Run, to be held on Sunday 7th September. To secure your place please complete the entry form below and email back to paul@maxappeal.org.uk
Please ask any friends or family if they will consider taking part too. Make it a family affair !
Max Appeal will provide a free running vest and fundraising pack, pre and post race meet up opportunities and support.
It's a fun weekend too for a good cause and will help us continue our work supporting families affected by 22q11.
The World View on 22q an International Scientific and Family Meeting CHOP
Save the Date
Children’s Hospital of Philadelphia – 22q and You Center
The World View on 22q an International Scientific and Family Meeting
Professional Meeting: September 4, 2025
Family Meeting: September 5 & 6, 2025
Location: Philadelphia, Pennsylvania
More details to follow.
South-East 22q family get-together day at Queen's Park in Brighton
Mandy Sanderson, one of Max Appeals Trustees will be hosting a family meet up at Queens Park, Brighton on Saturday 30th August at 11am.
If you need to contact Mandy on the day for help, her number is: 07354 363565
Location: Queen's Park, meet near cafe and playground. 1 West Drive, Brighton, BN2 0QU
Whatthreewords location: TBC
HOW TO GET THERE
Public transport: see link for travel information Queen's Park
Walking route from Brighton railway station: around 22 mins https://tinyurl.com/yvhappy3
ACCESSIBILITY
Accessibility and toilets: see link for accessibility information Queen's Park
FOOD AND DRINK
As well as the cafe within the park itself, there are a number of places you can get food and drink nearby as well as in Brighton city centre.
http://www.moyosburgers.co.uk/
http://www.thesettingsunpub.co.uk/
https://www.theroundgeorgesbrighton.co.uk/
THINGS TO DO NEARBY / IN BRIGHTON
Brighton is a big seaside city and there is plenty to do and see locally. Queen's Park is about 10 minutes' walk North of the beach.
Brighton Palace Pier | Rides, Food, Games & More
Visit the World's Oldest Aquarium! | SEA LIFE Brighton
The Brighton Zip - Brighton's number one seafront attraction
The Tourism and Leisure Destination - Brighton Marina
Royal Pavilion & Garden - Brighton & Hove Museums
And for those who find the beach too hot, or not suitable for other reasons including mobility/wheelchair access, but would like respite from a hot Summer's day there is a playground/park with an accessible water feature around 15 minutes' walk away from Queen's Park.
Archery Day - 22q family meetup
Archery Day - 22q family Event
On Sunday August 17th our very own David Pitcairn will be hosting a free archery session for Max Appeal members.
The session will be held at Newton Aycliffe Archery centre from 11am, we have secured a function room at the club as well and will be providing lunch for families as well as giving everyone an opportunity to relax and spend some time together.
For those that are aged 7 and above they can take part in the full session, for those younger we will be putting on a session with the soft arrows etc.
Further details will follow next week along with a booking form so that we are able to know numbers etc.
This should be a really lovely day provided by Dave and his Archery club so please do look to attend if you are able too
https://www.facebook.com/groups/148993685945014/
Please book your places by clicking here
Places are free of charge.
Newton Aycliffe Sports Club
Moore Lane,
Newton Aycliffe
DL5 5AG
22q families Beach meet up, South Coast, Bournemouth, Dorset
Penny, one of our lovely trustees has organised a 22q family meetup on the 9th August at 11.30, at Bournemouth Beach.
Nearest car park is Bath Road car park
Meet at The Prom cafe 11.30am (4 min approx walk )
Bring picnic blankets / chairs / picnic if wish
Contact Penny - 07803 593913
Scarborough 22q Family Beach Day
Scarborough 22q Family Beach Day
We always sit infront of "the sands" apartments infront of the beach huts. Plenty of parking on "Royal Albert Drive" (seafront), by Peasholme Park and also by the Sea Life Centre.
I shall be there from around 9.30 ish so see you there!
