Upcoming Events
Parkinson’s Disease and 22q11DS
Please find attached the text dedicated to the first session:
Session 1 – Wednesday, February 5, 2026
🕗 8:00 PM – 9:00 PM (CET)
📍 Online via Zoom (link provided upon registration)
🎙 Speaker: Dr. Erik Boot (Netherlands)
🎤 Topic: Parkinsonism in 22q11.2 Deletion Syndrome
Registration site and price policy have been defined:
Registration website: https://my.weezevent.com/webinar-13
that the webinar will be subtitled in 50 languages
Three pricing options are available, depending on your means and your willingness to support the event: solidarity rate (5 Eur), standard rate (10 Eur), and supporter rate (20 Eur).
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
The 2026 International 22q11.2 Conference
Family Information: (see further down for professional information) Thank you for your interest in attending the 14th Biennial International 22q11.2 Conference. Please note that given 22q Europe now hosts an annual family meeting (most recently in Brussels in November 2025), the 22q11.2 Society conference does not have a family meeting component but rather organizes a retreat meeting focused on basic science and clinical research. That said, families and caregivers are most welcome to attend, especially those with a medical or scientific background/those who lead family organizations, but please know that the level of discussion will not be geared towards the lay public and there is no separate registration schedule for families. Those planning to attend the full scientific program should register as an “Attendee” at the following link:
https://chop.cloud-cme.com/course/courseoverview?P=0&EID=17022.
Individuals who do not plan to attend the lectures and instead wish to participate in the social program only - including the Welcome Reception, 22q Olympics and Sunset Social, Closing Dinner, and daily lunches - should register as an “Accompanying Person” but please note that accompanying person registration is an add-on only and must be booked at the time of a full attendee registration.
Please know that a meeting targeted specifically for families will be held in Philadelphia in September 2027 and the next 22q Europe Meeting will be held in November 2027.
Below please find all the necessary links for the upcoming biennial 22q Conference to be held at the beautiful Mirabello Bay Resort in Agios Nikolaos, Greece on the island of Crete (Havania 721 00, Agios Nikolaos Crete, Greece):
Click here for : 22q11.2 Society Meeting in Crete Abstract Hotel Fellowshp and Registration Details_January_6_2026_Final
Abstract Submission Portal
Closes at midnight EST on February 22, 2026. Please format your abstract/s as follows:
· Maximum 300 words – not including the title, authors and affiliations
· Type size: 12-point font
· Margins: 1/2"
· Text Alignment: Justified
· Typeface: Calibri
· Title: Bold, capitalize first word only, left justified; Institution/s: Italics
· Authors: Underline the name of the presenting author; Include all co-authors and their affiliations
o VERY IMPORTANT - Submitting authors are expected to present at the meeting in person
· Please save the file name as: “LastName_FirstName_22qAbstract2026”
· If submitting more than one abstract, please name as follows: ““LastName_FirstName_1_22qAbstract2026”, “LastName_FirstName_2_22qAbstract2026” and so on
Submit your abstract here: https://form.jotform.com/butlerca/22q-abstract-submission-2026
Please note: IF YOUR ABSTRACT IS NOT FORMATTED or SAVED CORRECTLY IT WILL BE RETURNED - IF YOU MISS THE DEADLINE AN EXTENSION IS NOT POSSIBLE
22q11.2 Society Fellowship Renewal or Initial Application
The title “Fellow of the 22q11.2 Society” indicates an ongoing commitment to lifelong learning, scholarly activities, and advocacy for those affected by chromosome 22q11.2 CNVs and related conditions, as well as to families and populations of individuals with more common conditions informed by studies pertaining to chromosome 22q11.2 differences and or variants within the region.
A REDUCED MEETING REGISTRATION RATE FOR FELLOWS OF THE 22q11.2 SOCIETY WILL BE OFFERED TO THOSE WHO HAVE COMPLETED THE APPLICATION FORM AND PAID DUES PRIOR TO REGISTRATION
Renew or apply to become a 22q11.2 Society Fellow here: https://forms.office.com/r/bVr7NmkF82
Meeting Registration, Important Dates, and Social Program
A scientific retreat in its purist form, the 2026 meeting will kick-off on the morning of Tuesday, July 14th and adjourn on the afternoon of Friday, July 17th
Please Note that an Extra Day Has Been Added to Support the Growing Number of Outstanding Abstracts
· To take full advantage of the outstanding pre-conference, scientific, and social program, plan to arrive on Sunday, July 12th and depart on Saturday, July 18th
As has been the case since our meeting in Mallorca in 2014, the IBBC-G2MH pre-conference dialogue will occur on Monday morning, July 13th followed by our “Complex Case” discussion on Monday afternoon, July 13th. Please note that a separate registration is required for both sessions
· Our outstanding Social Program includes:
o Our Signature Welcome Reception with heavy hors d'oeuvres on Tuesday evening, July 14th
o The 22q Olympics and Sunset Social, back by popular demand and featuring Greek pizza, on Wednesday evening, July 15th – so be sure to sport your nation’s colors
o Our Closing Dinner on Thursday evening, July 16th – so remember to pack your dancing shoes, singing voice, and party attire
· As always, accompanying persons are welcome and encouraged to attend but a separate registration is required to cover our costs
· PLEASE NOTE that EARLY BIRD REGISTRATION ENDS ON MARCH 22, 2026
Register for the meeting here: https://chop.cloud-cme.com/course/courseoverview?P=0&EID=17022
Hotel Reservations
Reserve your accommodations now at the breathtakingly beautiful Mirabello Bay Resort in Agios Nikolaos, Greece on the lovely island of Crete – the largest of the Greek islands!
· A world-class beach resort, also known as the Wyndham Grand Crete Mirabello Bay this retreat venue features a private beach, multiple pools, an indoor heated pool and spa, a fitness center, tennis courts, water activities such as paddle boarding, and family-friendly facilities including a kids' club and an amazing water park
· The meeting venue features guestrooms with private terraces or balconies with views of the Atlantic Ocean or the beautiful 18-hole championship golf course and gardens
· Rich in points of interest and only 65 kilometers from the Heraklion International Airport (HER), this amazing venue features magnificent views of the mountains meeting the Mediterranean
· Just 10 minutes by car, the small town of Agios Nikolaos was “discovered” by filmmakers in the 1960s, but it still feels like there’s room for adventure – with the legend-rich Lake Voulismeni as the centerpiece and surrounded by pedestrian-friendly walkways, tavernas, cafés, and shopping
· Beyond the city center, and only minutes away, millennia-old archaeological ruins and traditional villages await
Reserve your hotel here: https://mirabellobay.reserve-online.net/?checkin=2026-07-12&nights=1&rooms=1&adults=1&bkcode=PHHO¤cy=EUR
Please Note that the Hotel Price per Night Includes Buffet Breakfast, Vat and Local Taxes
To extend your reservation at the meeting rate, up to three days prior and/or three days following the conference, please contact central reservations at 1-506-638-4899 or 877-999-3223 within the US or Canada. To contact the hotel directly please dial +30 2841 028400
Questions? Please don’t hesitate to ask. We look forward to seeing your best work in the abstract portal soon and welcoming your smiling faces to our 14th Biennial Meeting!
Cheers,
Erik and Donna
Erik Boot
Program Chair
Donna M. McDonald-McGinn
22q11.2 Society Chair
22qsociety.org
Scottish families 22q family camp. Wiston Lodge
Outdoor Learning and Education Centre
Our 4th year hosting the Wiston Lodge Max Appeal family camping event.
At present this is only available to families living in Scotland.
Suggested age range; 5 - 25 years.
Ten places available (with one accompanying parent / carer).
All accommodation is within the building.. Meals provided.
Activities. Instructor led, all equipment provided, using the outdoors with the opportunity to experience of wide range of activities for fun, confidence building, working in teams. Meet other children and families affected by 22q11.
Some of the activities may include such things as archery, shelter building, out door cooking, grass sledging, traverse wall, team games, dam building, Explorers walk, air rifles and challenge course but these will be confirmed nearer the date.
A small charge for each child £65 and accompanying parent £10. You will need a sleeping bag and suitable clothes for the outdoors, a suggested kit list will be provided.
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.
Click here for more information of the site.
Click here to complete the booking form.
Great North Run 2026
Lace up, smile big, and join Max Appeal for the Great North Run on 13 September 2026!
Every mile you run helps support children, adults, and families living with 22q11.2 Deletion Syndrome.
Whether you're a seasoned runner or someone who only runs when the kettle boils, this iconic half marathon is your chance to do something amazing.
Sign up, train with purpose, and become part of a community that’s full of heart, hope, and determination.
Let’s run, have fun, and make a difference together!
Email Paul@maxappeal.org.uk and complete the attached form
Entry fee £30.00, minimum sponsorship target £350.00. We have 35 guaranteed charity places, please return your completed form to paul@maxappeal.org.uk.
22q Awareness Day - Family Meetup
Join us this Saturday for a fun-filled visit to the Natural History Museum!
📍 South Kensington – Natural History Museum
Cromwell Road, London, SW7 5BD
⏰ Meet between 10:45 and 11:15
📌 Find us by the Blue Whale (you can’t miss it!)
🎟️ Grab your free tickets here:
https://www.nhm.ac.uk/visit.html?utm_source=google&utm_campaign=brand&utm_medium=grants&gad_source=1
Penny and James Biggs will be your hosts for the day—just look for the Red Max Appeal T-shirts!
Feel free to wear something red too to help raise awareness and add to the fun. ❤️
We can’t wait to see you there! 🦖✨
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.
RAF Museum 22q Family meetup (Hendon, North London)
RAF Museum 22q family meetup, Hendon, North London
Save the date
More information to follow
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!