Max Appeal Family Meetup.
Arranged by Lisa F.
Please email us for further details.

/>info@maxappeal.org.uk

Max Appeal Youth Weekend, at Cranham Scout Camp, Gloucestershire.
Programme details to follow in 2018.

3 December at 9:30
Normanby Hall Country Park DN15 9HU Lincolnshire

Parent led family Meetup
Looking forward to hosting another Max Appeal family meet up for Christmas! There will be a visit to see Santa for all children who would like to see him and then we can have a walk round the park and let the children play.

NHS England are seeking service users views on PICU and Specialist Surgery services for children, as part of their national service review and you are invited to take part in the webinar.

The webinar is on 6th December at 11.00 and is dedicated to parents, carers and the third sector (charities). This is an opportunity to have your voice heard if this is an issue that has affected your family.

If you would like to join the webinar please email the review team at england.paedsreview@nhs.net and they will respond with more information.

22q Family meetup Normanby Hall

Thank you to Lisa Franklin for organising this family Day out.

It was my first time organising a meet up so I was a little nervous because a lot of the people who said that they were coming I hadn't met before. There were five families who came including myself and my two children and it was really lovely for people to be able to meet up with each other and chat about things. We were really lucky that they weather stayed nice for us and all the children loved climbing on the trees and having a run around. Everyone seemed to really enjoy themselves and asked that I arranged another meet up close to Christmas.

Thanks

Lisa

Look out for the upcoming Christmas family meet up.

If you would like to organise a meet up, please email us at info@maxappeal.org.uk and we can help you.

Jeans for Genes

Max Appeal was very pleased to partner with Genetic Disorders UK for this year's Jeans for Genes day on 22nd September.

Our members took part in a number of joint fund raising and awareness events around the country.

Max Appeal was one of the chosen charity's in 2017 and benefited from a Jeans for Genes Day grant. Some of our families shared their stories and helped to raise awareness of 22q11 Deletion Syndrome (DS) by being part of the publicity campaign. This included being involved in photo shoots, TV and press coverage. Some of the stories placed in the press which helped to support the day and raise awareness of 22q11 DS.

Monies raised through this year's Jeans for Genes Day supported the Max Appeal Youth Camp in July 2017 at Waddecar Scout Centre.

Bassingbourn mum speaks out about teenage daughter's genetic condition to raise awareness

.

Sophie's Story

.
www.jeansforgenesday.org/aboutus/whowehelp/readourstories#sopiesstory

Beechwood Mazda 7th December 2017 - Fashion show & Christmas stall.
All proceeds go to Max Appeal
8 Siddals Road, Derby, DE1 2QD

Max Appeal are pleased to report that we have been successful in securing a Bronze + Charity package for the 2018 event to be held on Sunday 9th September.

11th Biennial International 22q11.2 Conference

Genuine Registration Websites

Genuine registration websites
When registering for the conferences in Whistler, please check the URL to be sure that you have reached the genuine registration sites, which are:
click link for genuine registration sites.

The Tripp's cordially invite all friends both new and old to their annual 'Have a brew for 22q' event.
Tea, coffee and more importantly will be available for all at their house in Biggleswade Bedfordshire

Saturday 25th November 11-4pm

Please email mark@maxappeal.org.uk for more information

Thank you Helen for your support

A fantastic blog by Helen who ran the GNR for Max Appeal and raised over £700.


https://doyouevenrun.wordpress.com/2017/09/12/the-great-north-run-2017/

30th September 2017 Glasgow Royal Hospital for Children

A big well done to the Office for Rare Conditions, Glasgow, for organising this event, & thanks for inviting Max Appeal to take part.

There were an astonishing 54 adults attending the day, plus children, great to see so many there.

There were some very interesting talks in the morning by Dr Margot Whiteford, consultant clinical geneticist, Dr Patrick Noonan, consultant paediatric cardiologist and Vicky Price, clinical nurse specialist in immunology.

Lunch was a great opportunity for families to get together, compare notes & make friendships, great to realise that you are not alone.

The afternoon was run as a sort of workshop, managed by Grace Macleod, clinical nurse specialist in genetics and our very own Julie Wootton. They had so much sensible advice to impart in the management & education of 22q. The time flew for this session.

Glasgow rare conditions are hoping to organise further events like this, & Max Appeal will be involved again....looking forward to it.

Slide show presentations from the day are detailed below.

Dr Margo Whiteford

Dr Patrick Noonan

Vicki Price

Noahs Ark, Perth
Sunday 26th November 1-3pm.
Soft play & 10 pin bowling for any that think they are too old for soft play!!
We have our own room to use as a base.

www.noahs-perth.co.uk/

Gooey Events, Livingston- Sat 25th November, 3 pm
A chocolate workshop for young adults, primarily geared at those that have left school. It will make for a small group, giving plenty chance for the youngsters to chat together whilst making truffles & slabs of chocolate, & eating it no doubt!
www.gooeyevents.com/

Save the Date!
Aberdeen Science Centre – Sat 18th November, 11 am onwards. There will be plenty time to look at the exhibits & the centre will run a couple of workshops, bubbles & bugs, exclusively for us. All ages.

Max Appeal 22q families Day Trip to York

On Sunday 24th September 2017, I had the pleasure of hosting a family day out to York. It's the first time I have done anything like this so I was a little nervous about it. However, the weather was kind to us and there was a good turn out including some families who had only recently joined Max Appeal. I went with my husband, Jonathan and my daughter, Rachel who is a student at York St John University. Mark Tripp and Martin Kennedy also came along to support me which was much appreciated.

The main event of the day was a visit to the National Railway Museum. After some initial confusion about which entrance to meet at, we eventually found each other and went into the museum. The first stop for many of us was the café where we able to catch up and have a chat before going to explore the museum. It is a great museum with plenty of space for the kids to run about. The exhibits included the Mallard, the royal carriages, the bullet train and lots of interactive activities as well as children's play areas.

I had booked the indoor picnic area for lunch which gave everyone the opportunity to meet up again. It was a very sociable event and it was very satisfying to see people making new friends. After lunch, many families took the opportunity to go into the city centre for some sightseeing and shopping. We enjoyed a ride on the road train from the museum to the minster. My daughter Rachel and her new friend Charlotte are both big Harry Potter fans so they headed straight for the Shambles where they spent some money at 'The Shop that Must Not Be Named'.
At 3pm some families joined us at the York library café for a last cuppa before saying our goodbyes and setting off home.

All in all, it was a pleasant and relaxing day out. The kids (young and old) enjoyed the trip and I received a lot of lovely feedback.
If anybody out there is interested in organising an event for Max Appeal, my advice is to go for it. You will get plenty of support from Max Appeal and a lot of satisfaction from bringing together some lovely people.
Sue Colley

Wimpole Hall

On Friday 25th August 2017 Max Appeal members came together at the National Trust's Wimpole Estate for a family day out. We explored the grounds, the house and more importantly the farm.

We were blessed with beautiful sunshine and more importantly blessed once again with the ease in which the families attending came together and supported each other.

As a trustee it gives me great pleasure in hosting such days and watch as experiences and advice is readily exchanged. If you haven't been to a family meet up before they are highly recommended as are the National Trust family memberships which mean you have access to hundreds of family friendly environments across the country.
See you all at the next meet up.
Mark Tripp
Trustee

Re-register of APPG

On Wednesday 13th September 2017, Julie & Paul Wootton, Claire Hennessey, Mark Tripp and Julie Jones went to the House of Commons to re-register our APPG for 22q11. We had until 15th September to re-register. Our Chairman MP Jack Lopresti stood down and new MP David Duguid has taken the Chairman position. New members Heidi Allen MP will act as Secretary, Melanie Onn MP - Vice Chair, and Jack Lopresti as Vice Chair. All documents were signed and our re-registration was sent off and accepted. Attached are the draft minutes of the meeting. More information to follow....

Royston Crow News Article

A Bassingbourn mum of a teenager with a genetic disorder has spoken about the difficulties lack of awareness of her conditions brings, in the run-up to the nationwide Jeans for Genes Day.


Link to newspaper article. Royston Crow

Cerys Hennighan has 22q11.2 deletion syndrome – known as 22q – which causes a host of ongoing physical and emotional health problems for the 16-year-old.

Tracey and her husband Gareth, 50, then living in Royston were overjoyed when they were told they were expecting a baby.

At the 20-week scan they were told there was a problem with little Cerys' kidneys and that she had club foot.

The 45-year-old said: 'I was concerned, but every time I went for a scan I was told she was OK. Then the fluid around the baby kept increasing, a condition called polyhydramnios, which I since found out can be a sign of a genetic disorder.'

'Cerys was delivered by emergency caesarean at the Rosie Hospital in Cambridge, and the umbilical cord had been wrapped around her abdomen.

'I didn't get a chance to kiss or hold her, she was taken straight to the Neonatal Intensive Care Unit.

'All I had was a polaroid picture of her, it was a really distressing time. I suffered complications from the birth as well so Gareth was going between me and Cerys seeing if we were both OK.'

When they were well enough to go home, nursery nurse Tracey said she was called 'a neurotic mother' for more than four years while she told doctors of Cerys' symptoms.

She had developmental delay – highlighted further when brother Ryan – 20 months Cerys' junior, began overtaking her – speech problems, an appearance characteristic of 22q among other markers.

Cerys was finally diagnosed with the chromosone disorder aged four, after seeing a new doctor who diagnosed a cleft palate – another sign of the condition – and then finally being referred to a 22q clinic at Great Ormond Street Hospital in London.

She has the most frequently occuring chromosome disorder – a microdeletion of the long 'q' arm of chromosome 22.

On life now, Tracey said: 'If we have a healthy week, it's a good week. Cerys has malrotated bowel, immunity problems, sleep difficulties and social and emotional difficulties, she also uses a wheelchair when she needs to.

'From a young age Cerys had low self esteem, she knows she's ill aand has go to to hospital a lot. She knows that she has this genetic condition and that it's the reason she has these diffculties.

'She's in alternative education because when she had to do her GCSEs at school she had a mental breakdown, she completely withdrew and wouldn't come out of her room.

'The reason we moved to Bassingbourn five years ago was so we could get a house big enough to convert a garage or build an extension because Cerys will have to live with us forever, she needs that care and can't live on her own.

'Cerys and I have a really close bond, she loves her dad and her and her brother are normal siblings really.'

'She goes horseriding in Elstree, because that's the nearest Riding for the Disabled Association centre we could find, and she loves it. she goes once per week.'

The family have also had support from the Max Appeal – which supports families of those with 22q and other genetic disorders – since Cerys was diagnosed.

This year the charity will receive a grant from funds raised on Jeans for Genes Day for a children and young people's activity weekend.

Tracey said the family has experienced ignorance about her daughter's disability, especially around her behaviour – Cerys' mental age is around four years younger than her age, she has short term memory problems and some aspects of her condition present like Asperger's Syndrome and ADHD.

'22q affects more people than Down's Syndrome but hardly anyone knows about it – there should be a global campaign,' she said.

'I wish there was more understanding out there, and I want people to remember however people seem, you can't see what's going on inside.

'We do get looks from people out and about, because she looks like she hasn't got a disabilty.

'Even in the NHS if we see a junior doctor I ask if they've heard of 22q, because they just don't know how to treat Cerys.

The annual conference of the British Association of Community Child Health is always a good place for Max Appeal to have a presence as there are around 200 community based paediatricians and other professionals in attendance.

This year, the two day conference was held at Southampton Solent University. Sally Fysh, Max Appeal member came along to help out and ensure all those at the conference knew about the Consensus Document for 22q11 DS. It was good to hear from many of the professionals and to know they have 22q11 DS families accessing their service. Most of the information booklets and other Max Appeal goodies were handed out.. always a good way to ensure 22q11 DS remains on the radar.

The annual Max Appeal Day on the Beach family meet up on Scarborough beach took place on Sunday 13th. This is the sixth time we have organised this family meet up and once again it proved to be a wonderful day with new and old faces attending the event. Year on year this event proves it's worth for us all together and catch up.....see everyone next year!"

Glasgow Royal Hospital for Children

Organised and run by Glasgow Royal Hospital for Children
Seminar Room 1
Laboratory Medicine Building
Entrance opposite the Royal Childrens Hospital - Glasgow
11am - 3pm

INFORMATION ON THE 22q11 EUROPE 2nd ALLIANCE MEETING
WHERE

This meeting will be held in the Edmund Burke Theatre of the Arts Block in Trinity College, Dublin on Saturday the 7th and Sunday the 8th of October 2017.

Everyone is welcome and it would be lovely to see you there.

Normanby Hall is a lovely place that's not too big to have a look around but has plenty of space for children to have a run around.

A thank you to Max Appeal for the IAAF World Championships tickets

I am so very glad that I saw your post about the tickets for the athletics.
I called Dan straight away and asked him to apply. He didn't think that we would get them and to be honest neither did I.
He was very excited when we got the e mail to say that we had been successful!

We booked our travel and accommodation and we both took great delight telling friends and family about Dans up and coming adventure!
We left gloomy cloudy Glasgow and just a few hours later, courtesy of Virgin Trains, arrived to a beautiful sunny afternoon in London!!
We checked into our hotel, put our shorts on and off we went!!

Everything was perfect, The Sports Village, memories of The London Olympics and, our spectacular seats!
We were so close to the action, Dan was amazed that there was so much going on, pole vault, javelin, 100m heats, 400m, shot put, 110m hurdles!
We even saw Usain Bolt and Jessica Innes .
Dan will never forget our amazing time and as you can see from the photos, he has a knack of getting athletes to pose for selfies!
It was amazing for me to see his confidence!

Thank you very much to the very kind benefactor and to Max Appeal, you've made a 16 year old boys summer.

Louise (Dans Mum). X

Written by Suzy, parent of Jack

When Mark asked if I would do the 3 peaks challenge again I didn't hesitate to say yes, although this year I dragged my poor husband along. It's not just about raising funds or awareness for us, but a personal individual challenge.

Our children face challenges on a daily basis, from the moment Jack was born he's been prodded poked and undergone surgery that was life threatening, but always ...always put up with everything and comes through smiling at the other end, and all of you with 22q children know that every day the simplest of things for us can be the most difficult for them.

So the day came, 22/07/2017 and very very wet! But we started well and the great thing was, we were all there for the same reason, we all love somebody with 22q, we were all prepared to push ourselves 26 miles and 5500 feet, and that's what we did.

The best thing is it's like being in a big family, there is always somebody waiting for you ...usually with a bottle of lucasade, a cup of tea a sandwich or just sometimes a cuddle a cheer and a round of applause. Those pit stops are like Jacks medicines they keep you going .

Yes ...there were times when we struggled, you get to the top and you can't find the trigg point for the mist, but you just carry on just like Jack... until the sun comes out, and it did ....the very last peak ...sun , heat...and finally dry clothes! And for the last 8 miles we definitely were just putting one foot in front of another ...but then that's what our children do daily, they have to so we did and at the end our extended family were all there to congratulate, clap, hug and have a drink with ........and yes we were still smiling at the end!

Waddecar Camping..

So the weekend after the 3 peaks walk we arrive at Waddecar, Max appeal camp for us up North!!!
From canoeing, rock climbing, rifle shooting, archery, assault course, trips to Blackpool and not forgetting the camp fire and another year of Simon's Cecil getting even bigger .... the best weekend ever ..old friends new friends ...the more the merrier, and although Jack always says he's not going, has melt downs before and after every activity I know he enjoys it as much as us. For Jack these are all activities he would shy away from with friends his own age he would be worried about not being able to compete, be worried he wouldn't be as good as them so just wouldn't take part. It amazes me every year watching the children with each other, there's a unique understanding between the children that they are all the same, that they can be themselves and this also filters down through to the adults.


There's always plenty of food always lots of laughs and always somebody to have a chat with, but the very best thing about being with other 22q families is that nobody judges you or your child, never a disapproving look.

Camp is definitely great for the kids, it brings them out of their shells and for a short time they can be themselves ......but it's not all about the kids, at the end of the day when the parents sit round having a few drinks, they can also be themselves , compare notes ask questions share ideas , that only other 22q parents would understand !

The Tripp family invite all Max Appeal families to their summer meet up which will this year be held at the Wimpole Estate, Royston, Cambridgeshire on Friday 25th August.

Information Poster

We have a double sided A4 poster available for you to pass to your local health service providers, to help raise awareness.

Please complete the attached order form to arrange for us to post one out to you.

Back of the poster.

Max Appeal AGM for year ending August 2016 is being held at 1.00pm on Sunday 30th July at Waddecar Camp.

It was that time of year again for new and old campers to meet up at Cranham Scout camp in Gloucester. We had a full and varied programme planned for the weekend with plenty of willing helpers to ensure everything went smoothly and to ensure the children and young people attending had a fun time.

As usual the weather was kind to us and it was lovely to spend most of the weekend outside enjoying the peaceful surroundings.

The children enjoyed many of the regular activities, including archery, riffles, bush craft, grass sledging, climbing, the challenge course and dam building as well trying out some new things. This year we welcomed local artist Julie Kingscott who held a relaxing and inspiring art session. The outputs from the children were amazing.

The Mum's had a relaxing time too with Kelly Tripp directing an excellent crochet and knitting class in the field and enjoying the sunny afternoon.

Everyone enjoyed the annual BBQ and camp fire sing song, expertly led by Simon Lonsdale. We were all able to welcome Mark Tripp, Max Appeal Trustee and his weekend football pals back to join us after they celebrated Arsenal FC winning the FA Cup... Mark had even given up his cup final ticket to be at camp this year. We were all amused to hear the only TV they could find to watch the match meant gate crashing a local wedding party celebration!

As we sat around the campfire and benefited from a clear night sky some of us even managed to view the International Space Station as it passed overhead... thanks to more expert parent knowledge.

As always, we could not have organised this weekend without the support and help of many helpers and volunteer parents. Thank-you for helping to organise all the activities, keeping everyone fed and watered and all the things that go on behind the scenes to make these weekends so successful. Thank-you to all the children and young people who took part, who had a go at new things, who made new friendships and renewed old ones.
Do take a look at the Waddecar camp in July if you think your child / young person would like to give camp ago.

Max appeal camp was exciting good fun and active.
I really enjoyed seeing my 22q friends I liked talking to them.
I liked doing all the activities. I look forward to going every year. Thank you for a great time.!

From Hannah

I think that this year camp was more relaxed and there was more fun activities like archery I really like Ted because he was funny and Steve was the best and Harry as well. I really enjoyed rifle shooting because the first time I didn't get all of the targets but on the second go I got all of them accept three shots and I really like grass sledging it was really fun. For the first time I slept in a hammock for two nights and I sometimes don't like it because my dad kept rocking me and annoying me. The food was really excellent as usual.
From Daniel.

Leah trying Archery

This year Max Appeal is one of Genetic Disorders UK partner charities

This year Max Appeal is one of Genetic Disorders UK partner charities. This means we will be sharing in their new 50/50 income share scheme for the 2017 Jeans for Genes Day.

Max Appeal will be also benefiting from a Jeans for Genes Day grant to help support our youth activity weekends.

This is what you can do to help support the national fund raising day, Jeans for Genes.

If you can persuade your child's school or your place of work to participate in this year's Jeans for Genes day (and providing they have not held a fundraising event for Jeans for Genes Day for the past 3 years, - 2014, 2015 or 2016. If they have done, the school cannot be recruited as part of this scheme).

Both Max Appeal and Genetic Disorders UK can equally benefit from any monies raised, - 50/ 50!

Here's the steps to take next:

1) After ascertaining that the school has not held a Jeans for Genes Day in the last three years, the supporter arranges to meet with the head teacher or other member of staff and explains:

a) that they are supporting initiative to fundraise for Max Appeal

b) that if the school held a Jeans for Genes Day, half of the money raised would support Max Appeal families and half would support all those affected by a genetic disorder in the UK.

2) The head agrees that it would be something the school would like to do.

To ensure that this school is linked to Max Appeal, the supporter must ask the school to choose your organisation from the list of affiliated partners at the bottom of the registrations page when going to the Jeans for Genes Day SIGN UP page.

Please register your event on the link below and ensure you nominate Max Appeal.

http://www.jeansforgenesday.org/register/

3) Once the school has confirmed they have registered, please would you ensure you inform info@maxappeal.org.uk so we can keep a record of schools and workplaces that our supporters have recruited.

4) You should then receive a Jeans for Genes fundraising pack... have fun supporting both Max Appeal and Genetic Disorders UK on Jeans for Genes Day.

Max Appeal one of Mazda UK's charity partners...

Max Appeal are delighted to announce that we have been chosen to be one of Mazda UK's charity partners.

Trustee Mark Tripp recently attended Mazda head office alongside representatives of the Charities Grief Encounter and Emelia's Little Heart where he heard about the first of their fund raisers by one of Mazda's long term partners Cox Automotive. Max Appeal thank all those involved at Mazda who helped us get this exciting and unique opportunity.

This is exciting news for all at Max Appeal and we look forward to working alongside Mazda to help raise our profile and create awareness of the work we do within the world of 22q11.

Keep and eye out for upcoming events and if your in the market for a new car then why not start with a trip to your local Mazda Dealer first.

Feedback Form

Just a few questions for you to answer please, to help us make sure next years event is even bigger and better for you all.
Thanks
Steph
https://www.surveymonkey.co.uk/r/D8HZZMW

Mark Tripp reports:

All,

On Sunday 14th May a small band of Max Appeal supporters met at the BBC building in Hull City Centre. We were there to see the start of the MG Owners club Wolds Way rally curtesy of Geoff and Christine Kirk.

The day was amazing for all that attended, not only were we warmly welcomed by the rally participants but we also managed to visit a local museum and the fabulous Deep Aquarium.

We also managed to get mentions on both BBC local news and on BBC look North radio so helped spread the word about Max Appeal and 22q11.

With out doubt the highlight of the day was Geoff arranging for our children and teens to take rides around town in this fascinating cars.

We at Max Appeal thank both Geoff and Christine and their family for a fabulous day and for helping to raise over £300 for Max Appeal via a charity raffle. We look forward to hopefully making this an annual meet up for our North East members. It was especially nice to see their son Richard taking part in the rally and showing that 22q11 isn't holding him back.

Finally I finish by attaching a thank you letter sent to the MG club which was published on their website http://mgccyorkshire.co.uk/gallerys-reviews/

Mark Tripp
Trustee

Sue Colley will be hosting a family day out in York on Sunday 24th September.

In July 2016, NHS England published a set of proposals regarding the future commissioning of congenital heart disease (CHD) services for children and adults. They describe the actions which NHS England propose to take in order to ensure a consistent standard of care for CHD patients across the country, for now and for the future.
NHS England propose to do this by implementing national service standards at every hospital that provides CHD services. The effect of their proposals, if implemented, will be that some hospitals will carry out more CHD surgery and catheter procedures, while others, which do not meet the relevant standards, will stop doing this work.
The aim of their public consultation is to provide you with information about their proposals, and the potential impact they may have, if implemented, on the delivery of services, and to seek your views about their plans.

During the consultation period NHS England will be attending a range of events (see events list). They will also be hosting events including three large-scale face to face events and a series of webinars (online meetings)

Please see further details on the link provided.
https://www.engage.england.nhs.uk/consultation/chd/

Young People CHD

So that children and young people are able to understand the proposals and share their thoughts NHS England have created the Young People CHD website with an animation and a secure portal that can be used by them to tell NHS England how they feel.
www.youngpeoplechd.co.uk/

22q at the Zoo 21st May 2017

On Sunday 21st May 2017 around the world the 22q11 Deletion Syndrome community came together to Raise Awareness of this little known Syndrome also known as Di George Syndrome and Velo Cardio Facial Syndrome by holding a get together for families to meet others who have a family member or members with this genetic syndrome
This was the 7th year this event at a designated Zoo has been held

Here in the U.K. 3 main Zoo venues were chosen, ZSL London Zoo, Chester Zoo, and Edinburgh Zoo were chosen by Max Appeal the only U.K. charity that supports sufferers and their families with this Syndrome

Chris and Sarah Ryan again were able to host this year and hosted at ZSL London Zoo, Chris' Company, Link2Connect helped to sponsor ZSL London Zoo along with Max Appeal to offer reduced prices at the U.K Zoo's


Chris, along with Sarah and Leah who both have 22q11 Deletion Syndrome were at ZSL London Zoo to welcome families who enjoyed a great day out and then meeting at lunchtime for a chat and a group photo, we welcomed 160 people to this event

(reported by Chris & Sarah Ryan - Thank you)

Photo - Chester, Edinburgh and ZSL

Chris & Sarah Ryan

Tracey Hennighan is holding a stall...

At the Summer Fete at Mossbury School.

12-3pm Sunday 16th July

Please feel free to come along to help support Max Appeal.



www.mossbury.herts.sch.uk/

Fairmont St Andrews
Scottish Open St Andrews
www.standrewsbay.com/

Balmoral Estate Golf Course
https://www.youtube.com/watch?v=AGjB7FraiyQ

New information from Cardiff University's ECHO study was released on the 12th June, 2017.

See a summary of the findings on the link attached.
www.cardiff.ac.uk/news/view/781774-22q-summary-of-our-findings

A documentary short about a condition that many people have never heard of...

Who Knew About 22Q? A documentary short about a condition that many people have never heard of; 22Q11.2 Deletion Syndrome.
It is now thought to be as common as Downs Syndrome with more than 1 in 2000 babies estimated to be born with it. Yet many people have never even heard of it. I went on a journey to meet and speak to people living with the condition and gain an insight it to what it's like living with one of the most common unheard of genetic conditions.
Produced, filmed and edited by © Jade Vowles.
https://www.youtube.com/watch?v=1OolZepMh3A&t=11s

Following fast on the heels of the day with West Bromwich Albion we were notified that Max Appeal had been granted a unique opportunity to have our name emblazoned around Stoke City's ground for their premier league home game against Hull on Saturday 15th April.

With bated breath, we tuned into Sky Sports and Match of day to witness the name of Max Appeal and 22q11 being shown to an audience of millions.

We are hugely grateful to the team at Project 11 who donated the advertising to us so that we can continue to help raise awareness of 22q11 Deletion Syndrome.

To see our name scrolling across the advertising
hoardings was a dream come true and attached are a few screen shots that prove we really did make it into the premier league.

Fans Eye View:

Goal Mouth Action:

On the 12th April four lucky Max Appeal families were invited to take part in a special fans day hosted by our friends at West Bromwich Albion FC.

Meeting at 11.30 the families were able to join other specially selected guests at the Hawthorns where they were treated to a gorgeous hot lunch before the main event which was a meet the player's session. The West Brom footballers were once again at their most welcoming and the families involved were able to meet and talk with their idols, autographs were gathered, football shirts signed and long lasting memories were made.

After the meet the player's session all our families were invited to take seats in the football ground where they were able to join fans of the club watching as the players worked of their lunch being put through their paces at a special training session.

The wonderful Jamie has produced this video blog of his day which includes a wonderful interview with England Goalkeeper Ben Foster, I would urge you all to take a look at the Interview and I hope it gives you as much joy as it bought to this reporter and more importantly Jamie himself

https://www.youtube.com/watch?v=8_fhICUQ5lA

This is now the second of these type events that Max Appeal have had the pleasure to be involved with through West Bromwich Albion so if anyone has any contacts at other sporting clubs please let us know at info@maxappeal.org.uk as we would love to be involved in helping to organise other days out similar to these.

Once again Max Appeal sends its heartfelt thanks to all the players and staff of West Bromwich Albion football club for hosting our families.

Amelia meets James McLean

Emily meets Salomon Rondon

Please find below the link to Children's Heart Federation webpage, Cardiac Staff Teams
www.chfed.org.uk/cardiac-staff/

The Rickshaw Run – Team Livin' on a Paneer
The what?
The Rickshaw Run is a 3000km adventure riding a 7 horsepower, wholly unsuitable, poorly maintained and all-round awful Auto Rickshaw across India. There is no set route, no backup and no real way of knowing where we are going. Last year Matt, Daisy and Nev rode the length of Vietnam on locally bought, ancient communist motorbikes and this year have decided to make things a whole lot more dangerous and ill-advised.
We have decided to go with Max Appeal as our charity of choice along with the organiser's charity - Cool Earth. Max Appeal has offered fantastic support, guidance and friendship to those with 22q as well as their families. The aim is not only to attract donations to this fantastic charity, but also to raise awareness through social media before and during.
We are hoping to run a blog during our trip which includes a live tracker so our progress, or lack of, can be monitored and mocked. If you'd like to donate or read more about it our event please see our JustGiving page at:
https://www.justgiving.com/fundraising/LivinOnAPaneer

Student Emily would like to ask for your help...

Please find link below to a small questionnaire

My research is on the impact on parents with a child with 22q.11.2 deletion syndrome. I am really interested in this area of the medical field and feel that it has not been spoken about enough! this is why I have chosen this condition as it is very close to my heart and a lot of people have never heard of this condition. In fact nobody in my class or teachers have ever heard of it and that's 100 people that will benefit from my research and hopefully learn and spread awareness.

I'm currently studying on an access course; health and health sciences, one of my units is to do an individual project, in which I have chosen to investigate in the awareness of Di George Syndrome (22q.11.2 Deletion).

https://www.surveymonkey.co.uk/r/MRRGKLP

Taking on The Monster to raise more awareness of Hayden's condition and to give a little back...

Hello all you lovely people.

On 15 August 2017 I will be taking on the 60 mile (100km) Great Glen Monster Challenge on a stand up paddle board. The route covers the width of Scotland, and runs from Fort William on the west coast, to Inverness on the east coast. The paddle will take me across the the Caledonian Canal, Loch Lochy, Loch Oich and the mighty Loch Ness.

I aim to do this distance in 2 days (it would usually take 3 to 5 days on a canoe) with a paddling time of about 10 hours per day - depending on which way the wind is blowing! Oh, and I'll be doing it on my own.

My goal for this challenge is to create awareness for a genetic condition called 22q11 deletion syndrome which my son Hayden was diagnosed with when he was just a few months old. I would also love to be able to raise some money for a number of charities like Max Appeal ‌ that support families living with with 22q11 deletion syndrome.

Full details and to donate:
https://www.gofundme.com/3o8serk

Darren would like to include some names of children affected by 22q11 DS on the t shirt which he is going to wear.

If you would like your childs' first name on Darrens shirt, please email us at info@maxappeal.org.uk so we can pass the details to Darren

A huge well done to all our London Marathon Runners 2017

What an amazing day at the Virgin London Marathon 2017. We had 9 runners running on behalf of Max Appeal and they did us proud with some very impressive times..
1. Nick Padley 3.22.20
2. Waleed Agabani 3.22.47
3. Neal Mc Cathie 3.25.29
4. Vicky Elston 3.28.48
5. Ross Taylor 3.34.27
6. Paul Warner 4.21.56
7. Russell German 4.37.20
8. James Davis 4.38.22
9. Martin Silvester 4.47.29

They have raised so far £11,000 between them. Max Appeal are very grateful for their support and taking the opportunity to raise awareness for Max Appeal. A fantastic achievement.

Richard has kindly offered to donate 50% of all book sales until the 1st May 2017

Hi I'm Richard Le Tourneau, I put the post on your facebook group about donating through sales. I'm an author, mainly I write horror but I also have a lot of children's stories I'm working on. I released my first one Sprout last month in paperback (£4.99) and ebook (99p.) I would like to donate to Max Appeal 50% from the sales starting today and ending on May 1st.



www.amazon.co.uk/dp/B01N7S1BHH

Jeremy has just moved with his parents and older brother to a house in the country, it's only temporary due to his father's job. But not long after moving in Jeremy notices strange figures in the forest just past the bottom of the garden. His curiosity grows as does that of the unknown creatures who reside in the woods.
Jeremy soon befriends one of the strange creatures one night when it suddenly appears in his bedroom. Jeremy soon learns that their home in the forest is under threat from a house developer who plans to rip it all down and the neighbouring farm to make way for houses. But the creatures don't want their presence to be known to people, so Jeremy now needs to think of a way to stop the developers before its too late and also try to keep the Furnicles a secret too.

I spent a lot of time creating the language to make it easy and fun for both children and adults to learn and speak. Even though I have put the age on the book as 8-9 years-old it can be read by children younger, It has no bad language or scary scenes, It's a fun and charming book for all the family to enjoy.

MAX APPEAL
YOUTH ACTIVITY WEEKEND
29TH – 31ST JULY, 2017
WADDECAR SCOUT ACTIVITY CENTRE, SNAPE RAKE LANE, GOOSNARGH, PRESTON LANCASHIRE PR3 2EU
Max Appeal invite you to attend a youth activity weekend for 7 – 25 year olds based in the beautiful Forest of Bowland 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.
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; canoeing, raft building, archery, shooting, explorers walk, visiting local area, team games, crafts, bush craft, climbing, challenge course.

MAX APPEAL
YOUTH ACTIVITY WEEKEND
26 - 29TH MAY, 2017
CRANHAM SCOUT CENTRE, CRANHAM, GLOUCESTERSHIRE, GL4 8HP
Max Appeal invite you to attend a youth activity weekend for 7 – 25 year olds 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.
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, crafts, bush craft, dam building and challenge course.

Meet the Baggies Wednesday 12th April 2017
Entries now CLOSED !
Max Appeal are delighted to announce that we have been invited by our friends at West Bromwich Albion to attend a special meet and greet session to be held at their Hawthorns Football ground.
Lunch will be provided by the club and afterwards you will be able to meet the players before you watch them go through their paces at a special training session.
If you or your son/daughter are mad about either the Baggies or Football then this is a day not to be missed. Football fans of other clubs may apply but the club would ask that only West Brom Football shirts are worn.
If you would be interested in applying for a place please email the name of who you would like to attend and their accompanying carerparent to info@maxappeal.org.uk.
Closing date for entries will be Friday 25th March with the 3 lucky winners being contacted by email shortly afterwards.

Itinerary
11.30 Guest Arrives
12.30 Lunch is served
13.00 Meet the players
14.30 Training Session Commences

Please note there will be others invited groups in attendance on the day

A Redhill teenager who dreams of competing in the Paralympics has spoken out about her struggles to live with a disability.

Alicia Hennessey, aged 17, is one of only 2,187 people in the UK who has been diagnosed with genetic condition, 22q11 syndrome.

The condition often goes undiagnosed as it has no set symptoms; it manifests itself differently from one person to the next.

However, effects can include fatal heart defects, immune deficiencies and speech and learning difficulties.

22q11 syndrome is caused by a problem with part of a person's DNA, and this small defect is the reason why Alicia has faced so many health problems.



Alicia Hennessey with her pony Todd at Urchinwood Manor. Picture: Eleanor Young

www.thewestonmercury.co.uk/news/paralympic_hopeful_speaks_out_about_life_long_genetic_condition_which_will_not_get_her_down_1_4915542

A report by Max Appeal – the only charity which supports families dealing with 22q11 – estimates 128,000 people in the UK are affected but only 2,187 have been diagnosed.

Alicia was diagnosed with the condition after she was born with congenital heart disease and she says the early diagnosis has made a huge difference to her quality of life.

She said: 'I am glad we picked up on the condition early because it meant I knew, if I was ill, the reason behind it. A lot of people can go their whole lives without being diagnosed.'

Claire Hennessey, Alicia's mother, said: 'Alicia has a great team of clinicians supporting her at Bristol Children's Hospital but she has had to contend with many health problems since birth.

Alicia Hennessey with her mum Claire. Picture: Eleanor Young

Claire said horse riding has been therapeutic for Alicia, while she aims to compete in dressage at the Paralympics. Alicia is waiting to find out which Paralympic category she will be placed in.

This comes despite Alicia suffering from chronic fatigue, which can mean she is too tired to get out of bed.

She said: 'I have not been able to go to the stables as much as I would like to and it is frustrating for me because I need to build up that relationship with my pony, Todd.

'If I do too much in one day then I get payback days and I will find I cannot do anything, which has meant it has been difficult to keep up with all my studying and everyday life.'

But Alicia has not let her condition hold her back. She has secured a spot at Boom Satsuma Creative – an arts and media college in Bristol – and a place with LegUpForTalent, a sponsorship programme for up-and-coming horse riders.

She added: 'I do not let my disability get me down or get to me; some people do not always understand my problems and how I am feeling.'

To help support Alicia on her journey to the Paralympics, visit www.facebook.com/legupfortalent


Alicia Hennessey. Picture: Eleanor Young

Nevin Lecture Theatre, St Thomas' Hospital near Central Hall

Ivy Mitchell has been nominated by the Sleaford Standard for their Overcoming Adversity award.

Read the full article about Ivy's challenges;

THE BRITISH 10K
Welcome to the ultimate foot tour of London. Run by Trafalgar Square, the Embankment, Big Ben and more on our hop-on-keep-hopping run tour. Flat and iconic, the classic course is ready for your best time and your best selfie.
https://uk.virginsport.com/event/westminster-2017?utm_source=email&utm_campaign=launchdayb10k&utm_medium=email

Rare Disease Day 2017

Events were organised around the UK, Europe and the world to raise awareness about people living with rare diseases.

Max Appeal recently partnered with Mediaplanet UK on the Rare Diseases Campaign in The Guardian newspaper and online. View the link below:

Read motivating insight from leaders and learn more from patient stories on rare diseases.

bit.ly/2lF2pma

Upcoming parents resource room

Echo Evelina are opening their first office on the 27th Feb, opposite the Evelina & St Thomas Hospital, not only will they have an office base but in time they will also be opening a parents resource room that will be free for parents staying at the Evelina London to use offering facilities such as tea/coffee, computers, printers and relaxing furniture- giving space away from the hospital when needed.

They will also have a meeting and events space for max 20 people available to rent if you need to hold meetings, training or small focus groups in London.


0207 998 4710 – Main office number
0208 617 3100 – March 13th Direct Line

Address:
Canterbury House
1 Royal Street
London
SE1 7LL

Closest Station: Waterloo/Westminster
Opposite A&E of St Thomas Hospital

With an estimated 35,000 people, who are living with 22Q in the UK, you can do something to help and have a great time with friends and family.

Put the kettle on....

Get together, invite all your friends and family, set the date, put the kettle on and get the cakes in the oven. It's as simple as that.

Whatever you need to make your event a success, give us a call or drop us an email, as we have loads of goodies to help your Max Appeal 'Have a brew for 22Q' go really well and help make money for Max Appeal.

Free Tea Party Pack

Have a Brew pack includes 6 balloons, 6 cake toppers, A3 poster, bunting and money box.

To register your event and request your free pack please email: steph@maxappeal.org.uk Please send your name contact / address.

Additional items to make your tea party even more special will be available to order soon.

Additional bunting and posters can be downloaded below.

If you would like an additional money box pdf, please email me at steph@maxappeal.org.uk.

Bunting:

Cake Stands & Cake Toppers

For a limited time (stock depending) we will also send out a lovely cake stand for your cupcakes.

Extra cake toppers can be ordered here:
"Have a Brew" Max Appeal Cake toppers now available to buy. 25% of each sale goes directly to Max Appeal
https://www.mycupcaketoppers.co.uk/collections/max-appeal

Scarborough Beach Family Meet Up

Hi Everyone, Martin Kennedy will be hosting the Annual 22q Family meet up on Scarborough Beach again this year on August 13th. This will be the fifth year Max Appeal has run the event and is a lovely, relaxed meet up and everyone is welcome. Make sure you get it in your calendar!

Are you looking for a challenge in 2017 ?
Would you like to help fundraise for Max Appeal ?
Would you like to make lifelong friends ?
Do you need an incentive to get fit in 2017 ?
Do you have a head for heights ?

We are delighted to say that following the outstanding success of September's inaugural Swim Serpentine 98.4 of participants rated the event as excellent or good, London Marathon Events has been granted a one year licence by The Royal Parks to stage the event again in 2017 and the date has been confirmed for Saturday 16 September 2017

A few of us charities have been collaborating to get the effects of heart defects on child recognised with DLA.

We're not there yet but this is progress.

Some of you may have seen this article and be very concerned.

Please read the attached pdf with guidance from NHS England and if you are still concerned print it and take it to your GP.
Daily Mail article

Max Appeal 22q Family meet up For teens and young adults with 22q & carers/parents
25th February
Stevenage Hollywood bowl.

Fun way to raise some money for Max Appeal and have fun with your furry doggy friends.

Mark your Calendars for the Seventh Annual 22q at the Zoo for Sunday 21st May 2017.
Further details to follow.

Open to Max Appeal members only:

Applications are open to Max Appeal families for an exclusive Landmark Trust property weekend break.

Date: 17 -20 March, 2017, Staying At: Stockwell Farm, Old Radnor, Powys.

Closing date for applications: 31.01.17

Details of the property

A Max Appeal family have the opportunity to benefit from a well deserved weekend break, on 17 -20 March, 2017 at one of the Landmark Trust's exclusive properties. The property made available to Max Appeal is Stockwell Farm,

Full property details; - see link below

Sleeps 6 Plus a cot.

To apply; info@maxappeal.org.uk

Please send us your name and contact details with a short statement telling us why you feel your family would be most deserving of a well needed break and how an opportunity for a weekend away will make a real difference to your family.


Max Appeal Trustees will decide the most deserving application.

The trip is all expenses covered. Landmark provide the property and Max Appeal covers all your reasonable travel and subsistence costs.

Register now for 2017
Be a Kiltwalk hero and take Big Steps for a charity or cause that matters to you. With four locations and three walk lengths to choose from, there is a Kiltwalk for everyone.

Glasgow Sunday 30th April. Aberdeen Sunday 4th June. Dundee Sunday 20th August. Edinburgh Sunday 17th September.

What is The Color Run?
The Color Run is the original, largest and most unique 5k colour fun run in the world which celebrates healthiness, happiness, friendship and having the time of your life!

London Sunday 11th June. Manchester Saturday 1st July. Brighton Saturday 23rd August.


If you are looking for happy memories, big smiles and the most colourful day you'll ever have – this is the event for you.

What happens at The Color Run?
Thousands of Color Runners start the day in a special edition white t-shirt, getting covered from head to toe in a rainbow of colours at five stations around the course. Oh and did we mention you don't even have to run? You can choose to run, walk, skip or dance your way around the course. It's all about the fun and what gives you the biggest smiles!

What about the amazing 'Color Throws' I've seen in the photos?
Yes, that's right, the fun continues at the epic Finish Festival. Including an awesome mix of DJs, MCs, the truly famous 'Color Throws' and a host of 'Color Crazy' giveaways – the finish festival is truly the best way to celebrate with your friends. Trust us, THIS is the best post 5k party on the planet!