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

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! 🦖✨

RAF Museum 22q family meetup, Hendon, North London

Save the date

More information to follow

https://www.rafmuseum.org.uk/london/

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.

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.

Open Bakery

Menu – Starfish and Coffee

http://www.moyosburgers.co.uk/

http://www.thesettingsunpub.co.uk/

https://www.theroundgeorgesbrighton.co.uk/

http://www.hausonthehill.pub/

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.  

The Level

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

Unfortunately cancelled

Bath City Farm 22q family meetup

Save the date

Further information to follow

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 

Unfortunately cancelled..

Trip on the Llangollen Railway 22q families meetup

Save the Date

Further information to follow.

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!

National Railway museum 22q Family meetup - York

Save the date

Further information to follow.

22q family meetup

Come along for a wonderful and memorable day where you can connect with other families affected by 22q. It’s a great opportunity to share experiences, gain support, and build lasting friendships.

Meet at 10am at - - what 3 words.. ///scale.rinses.circulate This is near the Whelk Coppers Tearoom and Salt Café at 10am. We plan to be there about 9.30

If you can’t make it for 10am, just look out for the big red Max Appeal flag on the beach. Also check out the events on the Facebook group as Mark will add the “what 3 words” location, when they are setup

Parking Areas

1 Train Station - ///speaks.roof.backhand

2 East Cliff NNDC Carpark - ///named.galleries.operated

3 Norris Street NNDC carpark - ///trams.afflicted.blueberry

4 The Espanade - ///beginning.alive.deprive

Max Appeal 22q family meetup.

https://knebworthhouse.com

Come and join us in North Hertfordshire for a day out at Knebworth House, visit the gardens, the Historic House or take a walk around the roaming countryside before walking through the Dinosaur trail …….. oh and did we mention Fort Knebworth with its adventure playground ?

Park entry is from 10:30 and we will aim to meet for a picnic on the grounds from 12:30

This a great opportunity for members to come together and meet other families, with close links to the A1M motorway and nearby railway stations we look forward to meeting with friends both old and new.

Max Appeal will subsidise entry to the park and grounds, anyone wishing to tour the house can arrange to pay the additional costs on the day

Costs £9 per person over the age 3

Carers Free with the following

Disability Living Allowance (DLA)

Attendance Allowance (AA)

Blind Person’s Registration

Personal Independence Payment (PIP)

Armed Forces Independence Payment (AFIP)

CredAbility Access Card with +1 symbol

CEA Card

Herts Card

Please indicate if you are unable to provide the following please contact us at info@maxappeal.org.uk and we will see what we can do to assist

22q At the Zoo Awareness Day 18th May 2025

This year celebrates the 15th Anniversary of 22q at the Zoo.

Come along to Twycross Zoo, share your stories, make new friends and spread awareness.

Tickets are £10 each, carers are free (with evidence paperwork|) & under 3 free.

Discounted price only available to Max Appeal members and immediate family. Maximum 6 people.

Please use this booking form to order tickets = Zoo 2025 Booking Form

Your host will meet you at a designated time and place and provide entrance details and tickets.

22q at the Zoo – Worldwide Awareness Day® launched for the first time on May 22, 2011. It was originally planned as a Philadelphia (USA) event to promote friend raising and awareness. Thanks to families, professionals and other support organizations around the globe this “local” function morphed into a worldwide phenomenon where people gathered at their closet zoo for a day of fun and solidarity sporting our unique 22q at the Zoo T-shirts. While adults socialize, children enjoy the animals,. During all of this fun, teams of volunteers distribute fact sheets informing the public about 22q11.2 Deletion and Duplication Syndromes.

Tshirts available in a variety of sizes and also 2 designs. Our original Maxi Bear and our new logo Tshirts. These are not the official Zoo Tshirts, these are Max Appeal Tshirts.

Order your Tshirts here

Rare Disease Day is 28th February – and whilst we all know that 22q is NOT rare, this is an opportunity to bring 22q some media attention. Your short video clips, stories, poems and pictures would be wonderful to see. I am sure the iconic John Lennon record will feature too!

If you have something that you’d like to contribute please get in touch with us at Max Appeal so that we can put all our families together in a single approach to Genetic Alliance.

Please email us at info@maxappeal.org.uk

https://geneticalliance.org.uk/campaigns-and-research/rare-disease-day/rare-disease-day-2025/

Annual General Meeting F/Y 2022-2023 & Quiz Night Sunday 24th November 2024 at 6.30pm

Our AGM for the financial year 2022 – 2023 is being held via zoom at the beginning of Martin’s Quiz Night on Sunday 24th November 2024 at 6.30pm.

All the information is in the attached pdf file, where you can find out lots of fascinating information about activities From Sept 2022 to August 2023.

If you can’t make the on line AGM then we would encourage you to participate via survey monkey, there is a hyperlink and a QR code, or good old fashioned post!

Clearly, no-one would want to miss the AGM or the quiz night. The AGM only involves 3 questions and there are no wrong answers.

Quiz - Via Zoom https://us02web.zoom.us/j/88618795075?pwd=zPTzl5rDmDe2meldtjDyuErrH4PM8N.1

If you think you have something to offer the charity and would like to join the trustees, then please do complete the section at the end of the voting slip, or get in touch of you’d like to know more about what is required of trustees. Attached below.

Thank you.

Julie Wootton

Chairman of the Board of Trustees.

Max Appeal Annual General Meeting F/Y 2022-2023

Great North Run 2024

We are pleased to report that we have secured our guaranteed charity package of 35 places for this years Great North Run on Sunday 8th September. The target sponsorship to be raised is £250. To secure your place email paul@maxappeal.org.uk for an entry form.

Great North Run 2024

We are pleased to report that we have secured our guaranteed charity package of 35 places for this years Great North Run on Sunday 8th September. The target sponsorship to be raised is £250. To secure your place email paul@maxappeal.org.uk for an entry form.

Patient Information event which is open to anyone living with congenital heart disease in Scotland to attend.

29th August 2024 Golden Jubilee Conference Hotel. Registration from 6-6.30pm and finishing at 8pm.

Beardmore Street

Glasgow

G81 4SA  

Download Invite here

19th May 2024

22Q At The Zoo is a world wide event organized each year since 2011.

22q families gather at different zoo’s around the world.

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.

Hi Everyone.

Our hosts and zoo locations for this year are as follows:

Chester Zoo - Paul Wootton https://www.chesterzoo.org/
Paignton Zoo - Tracey Hennighan https://www.paigntonzoo.org.uk/

Marwell Zoo - Penny Biggs https://www.marwell.org.uk/
Five Sisters Zoo - Natasha Earle https://fivesisterszoo.co.uk/

Meet at the main gate if you wish to go in with other families.
Each host will recommend a lunch time meetings spot for around 1pm for families to meet and catch up.

Please drop us an email if you would like to attend, with how many in your party and contact details. This will help us keep you updated on the day of any changes or updates.

Pricing available on the individual zoo webpage.

Red Max Appeal T shirt booking form - https://cm.maxappeal.org.uk/payonline/22qzoo2024tshirt/

TSHIRT ORDER CLOSES ON 30TH APRIL

22q11 syndromes All-Party Parliamentary Group is holding its AGM on Wednesday 20th March 2024, 2.00pm – 4.00pm

Please write to your MP. You could also email or phone them. Don’t know who your MP is? Visit: Find your MP - MPs and Lords - UK Parliament

Dear……

The 22q11 syndromes All-Party Parliamentary Group is holding its AGM on Wednesday 20th March 2024, 2.00pm – 4.00pm. I would ask that you attend this meeting to represent me, as one of your constituents, and a family affected by 22q11DS. The work of the APPG, chaired by David Duguid MP, is invaluable to supporting the interests of my family and all those affected by 22q11DS

I would be pleased to hear from you that you will be able to attend.

If we have any Max Appeal members who would like to attend or would like more information, please email julie@maxappeal.org.uk

In December Clare ‘Bear’ Mcpherson sadly lost her battle with breast cancer, her family lost an amazing mother, daughter and sister and Max Appeal lost one of its most popular members, Clare was an amazing lady who was always to be found at the centre of any fun, she made many friends at Max Appeal both in person and online and it was through our online events that we discovered Clare was a quiz master, throughout Covid and subsequently after she attended virtually all of our Zoom quizzes, winning most whilst having fun singing and dancing along to the music.

We were grateful that even during her darkest days Clare was able to find comfort in joining us for our Xmas quiz, she won it of course and now it is time for Max Appeal to honour Clare with a special quiz night on Sunday Feb 25th at 7pm in memory of our beloved friend.

Zoom Link

https://us02web.zoom.us/j/85015010584?pwd=ME5mZm0xaFVJc3QrWXdEVmNsSzQ0Zz09

Meeting ID: 850 1501 0584

Passcode: 024194

Zoom Invite to discuss Cranham Camp

Come and join the organisers on this special zoom meeting to discuss all things Cranham

If your child is aged 7plus and you want to know about the Max Appeal Camp then please join us online for a special meet and greet followed by a Q&A session where we can ask any questions you have about the weekend,

All members are welcome to join us but this event is especially for those who have never attended before and would like more information about what a wonderful weekend to expect.

Zoom meeting Wednesday 21st Feb 6pm-7pm

https://us02web.zoom.us/j/86466149302?pwd=YzBuUi9pRzRYSDNzZkN6T3hQTmVoZz09

Meeting ID: 864 6614 9302

Passcode: 520325

We are pleased to report that we have secured our guaranteed charity package of 35 places for next years Great North Run on Sunday 10th September. The target sponsorship to be raised is £250 and no entrance fee this year. To secure your place email paul@maxappeal.org.uk for an entry form.

If anyone is mad enough to join us in 2023 and run with the Max Appeal Express please let Mark or Paul know. info@maxappeal.org.uk