Genetic Disorders Campaign 2016, Friday 23 September 2016
2016 Genetics Disorders Campaign We recently partnered with Mediaplanet on the 2016 Genetic Disorders Campaign in The Guardian newspaper and online at;
Great North Run 2016
Team Max Appeal rocked up to the new 5km run at Gateshead in the early hours of Saturday morning, where Archie Wootton ran in the new Max Appeal livery. The atmosphere under the Tyne bridge is always electric when the runners are warming up. Archie ran the 5km in 25mins 26 secs, which placed him 187th out of the 1,000 runners aged 14 years and up. Brilliant result.
Snooker Special. Aaron Cook Update
Last week Aaron played in his first u18 event at swsa Gloucester snooker academy and won first time It was a great achievement as Aaron had to play 7 matches he won 3-1 4 times won 4-0 once and drew 2-2, then won 2-1 in final so a great start to the season. Today we went to Poole in Dorset to play in three first regional junior tour easb. Aaron lost first game 1-2 won next 2-1, won next 3-0, unfortunately Aaron lost 2-1 in quarter finals. He made highest break of 67 for the day so all in all a good start to the season. Next week at the swsa Aaron is playing in an adult competition with a field of 67 competitors so will let you all know however he does in them. Aaron has been really working hard in the week to improve his game, playing snooker is helping him so much. He is learning social skills, self discipline and good behaviour, so come on all you youngsters I would really recommend getting involved with a sport and see what it can do for you. Thank you for your support on here means a lot for me and Aaron.
Have a Brew for 22Q!
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.
Heart Research UK - Change to NICE Guideline
Heart Research UK contacted you last year to make you aware of a NICE review of a clinical guideline that had implications for heart patients. The NICE guideline was introduced in 2008 and recommended an end to antibiotic prophylaxis (AP) during invasive dental procedures in patients at risk of developing infective endocarditis (IE). IE is a serious infection of the heart valves with a high mortality rate, severe outcomes for survivors and very high associated health care costs. Heart Research UK funded a project led by Professor Martin Thornhill at the University of Sheffield which found a very substantial decrease in the prescribing of AP and a highly significant increase in the incidence of IE since 2008. These findings were published in The Lancet and presented at the American Heart Association's annual scientific meeting. In September 2015, NICE announced that, despite Professor Thornhill's new evidence, the guideline would not be changed. This is in conflict with advice given by guideline committees in the USA and Europe who recommend AP during dental treatment for patients at high risk of IE. Now, after pressure from Heart Research UK, Professor Thornhill and an MP, NICE has made a small but significant change to the guideline. It now states that antibiotic cover against IE is not recommended 'routinely' for people undergoing dental procedures. Heart Research UK welcomes this change which should make it clear that in individual cases, AP may be appropriate. It allows flexibility so that dentists and cardiologists can recommend antibiotic cover when it is in the best interests of the patient, and means that at-risk heart patients can make an informed decision about their treatment. Heart Research UK is contacting patient groups, charities and cardiac patient support groups to help make heart patients, as well as clinicians, aware of this development. We thought you would like to know about this change to the NICE guideline and would be grateful if you would forward to this anyone else who may be interested. You can read more on the HRUK website:
Wicksteed Family Meetup 21st August 2016
On Sunday 21st August 2016 the Ryan family hosted a Max Appeal 22q meet up at Wicksteed Park in Northamptonshire, a new venue for us to use. We met up with everyone at lunchtime to have a chat and a group photo. It was a lovely day and we met new families who seemed grateful that this opportunity to meet others had been organised as some were new members and had not met anyone else with 22q11DS before. The venue seemed to go down well with the families with lots of different things to do. The Ryan family enjoyed meeting you all and also enjoyed a ride round park on the land train We would urge anyone thinking of organising a 22q meet up to Go For It It's a pleasure to help put people in contact with each other
November is 22q Awareness Month
November is 22q Awareness Month As the main awareness day on the 22nd November approaches we are hoping to help our members with organising lots of fun events and activities throughout the whole of November, events such as 'have a brew for 22q' and family meet ups. We would also love to promote your 22q stories and more importantly highlight achievements, these will be posted each day throughout November via Facebook, Twitter and the Max Appeal website. Please email us your pictures and a few words (max 100) telling us how you've overcome any 22q boundaries so that we can show the world. Please include age and first names. For this to be a success and to achieve maximum coverage we would need at least 30 so please help us get behind the month of November and make it the biggest awareness month to date. Email us at email@example.com
BACCH Conference Newcastle September 2016
The BACCH (British Association for Community Child Health) Conference is an annual conference attended by Consultant Paediatricians from all over the Country. In September Max Appeal Trustee and 22q parent Martin Kennedy attended the Conference on behalf of Max Appeal to increase awareness of Max Appeal and the 22q condition as a whole. Manning a stand in the reception area next to the conference hall he had the opportunity to speak with many of the consultants as they had their breaks and lunch. The majority of consultants spoken to hadn't heard of Max Appeal and there was great interest shown in the work it does. The consensus document proved very popular with many copies being distributed amongst the attendees. A very good two days where the objective of increasing awareness was achieved'.
Lucy Febrey Bungee Jump
On Saturday 13th August Lucy Febrey took part in a bungee jump on behalf of Max Appeal. She raised a fantastic £370 for Max Appeal. This is her story: Mum couldn't come and watch as she was so worried !!. Saturday was so exhilarating, it was incredible yet so scary. I love that when my cousin Elliott grows up will be able to look back and hopefully be proud of me. I loved it, it was such an amazing experience it was wonderful - I'm so grateful that I was able to raise money and awareness for such an amazing charity that helps so many people. I can't wait to do something in the future to raise more!!! I'm hoping for my next adventure to be a skydive!!! Lucy Febrey
Organ Donation Week 2016: Monday 5 September to Sunday 11 September 2016
'1,364 people in the UK donated organs after their death, enabling 3,519 deceased donor transplants utilising 3,932 organs. A further 3,779 patients had their sight restored through a cornea transplant. Living donors continued to make a significant contribution across the UK, with 1075 living donors, most donating a kidney. The overall number of living donors decreased slightly for the second year running and NHS Blood and Transplant is working with transplant units to try to reverse this trend. Despite steady progress in 2015/16 there is still much to do if the UK is to achieve the stated ambition of the Taking Organ Transplantation to 2020: a UK strategy and be among the best in the world. Increasing the numbers of people who consent to organ donation remains a significant challenge.'
The 10th Biennial International 22q11.2 Conference Professional Conference summary
WRITES Dr Samuel CHAWNER: It was a pleasure to attend the recent International 22q11.2 Conference in Sirmione, Italy, sponsored by the 22q11.2 society. This year was a special occasion as it was the 10th biennial meeting, the inaugural meeting being in Strasbourg 1998. The meeting featured a mix of outstanding invited speakers and selected abstracts, presenters included top 22q11.2 researchers and healthcare providers from 24 countries around the globe.
Family Fun at Warrington Sensory Zone
Wendy arranged a wonderful 22q family meetup at the Sensory Zone in Warrington. Max Appeal donated the money towards the day. Contact us if you would like help towards arranging another 22q family meetup. It's a great way to meet up with other families and share similar experiences. Thank you to everyone who came today I know there was only a few of us but it was lovely meet some new families. The kids had a blast and they all got along great xxx
News from the 2016 International 22q11.2 Family Meeting in Sirmione, Italy
July 2016 saw the latest meeting of the International Brain Behaviour Consortium meeting of the centres working on 22q11.2 Syndrome, the 10th Biennial International 22q11.2 Conference with a Scientific Meeting for professionals, followed by the Family Meeting which was sponsored by AIdel22, Max Appeal and The International 22q11.2 Foundation Inc. Full story, please click download button below:
Alicia reports from Waddecar Camping Event:
When first going to Max Appeal camp I was quite nervous to meet everyone. But by the end of the weekend everyone was talking to each other. Everyone felt more confident within themselves and they also pushed themselves to exceed more. I really enjoyed the camp fire singing. That really bought out my shyness and I felt very confident after that. I would do it again and I would not say no to it! I think everyone enjoyed the first Max Appeal camp up north at Waddcar Scout Centre! It was great fun and a lot of laughs ! Alicia
Max Appeal Camping Waddecar August 2016
I've just come back from the most amazing experience at Waddecar helping out with the Max Appeal activity weekend. The weekend started on the Friday with a meet and great and an early tea ably provided by fellow trustee Caroline Lonsdale, the food was amazing throughout the whole weekend and everyone was grateful for the amazing effort made by herself. Lissie needs mentioning as well for her efforts assisting Caroline and also Joshua who I can confirm makes the most amazing cups of tea I have ever tasted and his expertise will be put to the test at Cranham I'm sure.
Yorkshire Three Peaks Challenge 23rd July 2016
After a light breakfast a somewhat apprehensive but excited group consisting of Martin Barter (group leader), Simon Lonsdale, Chris Meldrum, Steve Robinson, Suzanne Starkey, Darren Daniel, Lee and Terri Morgan, Mike and Maria Harvey-Ashcroft, Debbie Payne and myself met outside the Station Inn Ribbleshead to begin our challenge. We had decided to take the unconventional route and start in a clockwise direction tackling Pen-y first, followed by Ingleborough and finally Whernside. By taking this route we were all aware that the two steepest parts of the walk would now be descents and they proved to be very steep indeed.
Max Appeal hero receives government award for her outstanding contribution supporting children
Max Appeal hero receives government award for her outstanding contribution supporting children with rare genetic condition 22q11 DS An outstanding charity volunteer from Bristol has received an 'Excellence in public health and wellbeing 2016 Award' from the Minister for Public Health, Jane Ellison MP, for her work with one of the few specialist clinics for the rare condition 22q11 DS in the UK based in Bristol. Rowena Hannam pictured with her nominator Jack Lopresti MP at the House of Commons This award celebrates the achievements of people who are tackling health challenges in their communities. As a mother of a child with 22q11 DS, Rowena uses her personal experiences to help other parents and is a highly valued member of the medical team.
Scarborough Beach Family Meetup 2016
It was good to see new families and old at the fifth annual Max Appeal 'Day on the Beach' meet up on Scarborough beach on Sunday 24th July. This meet up always attracts a good attendance and is a very relaxed affair where everyone can catch up with each other, have a general natter and meet new friends. The weather was particularly kind and sunny in the morning and this year we had the luxury of a beach hut to make teas and coffees thanks to Tracey Muschamp.
Great Donington Run, Sunday 25 June 2017
Join us next year...
Quiz Night, Thursday 01 September 2016
Quiz Night in Aid of Max Appeal Doors open at 7pm, starts at 7.30pm For more info please email: firstname.lastname@example.org Voice for All Room Lisieux Hall Dawson Lane Chorley PR6 7DX All Welcome
New Web Site: UNDERSTANDING CHILDREN'S HEART SURGERY OUTCOMES
I'm delighted to let you know about an innovative new website launched this week. Its designed to help parents and families interpret the statistics about survival after children's heart surgery that are published annually by the national audit body. The website is: http:childrensheartsurgery.info
Birmingham International Marathon, Sunday 15 October 2017
To be staged for the first time on Sunday 15 October 2017, the Birmingham International Marathon will cement the city's position as the European Capital of Running.
Max Appeal meetup Warrington Sensory Room, Friday 05 August 2016
Warrington Sensory Centre for Friday 5th August 12.00-2pm Meet up, organised by Wendy Cavaliere.
Family Crafty Fun Day for Max Appeal and 22q Aware, Saturday 23 July 2016
Family Crafty Fun Day for Max Appeal and 22q Awareness
Small Charities Week - Ebay Auction. Update
We had 5 items donated for our small charity auction and raised £318.32 4 of the 5 items sold. Thank you to all who donated and made bids.
Great Northern and Thameslink staff get on their bike (and much more) to raise money for charity
Railway workers from Thameslink and Great Northern have raised over £1,600 for children with genetic disorders during a Charities Week. Thameslink and Great Northern have been backing the Max Appeal charity which raises awareness of the DiGeorge syndrome, VCFS and 22q11.2 deletion syndrome (DS) and gives families affected the essential support they need. Great Northern Hitchin depot driver Mark Tripp of Biggleswade (pictured centre), has a son, Adam, aged 10, with the condition. A trustee of the charity himself, he presented the cheque to Max Appeal's chair of trustees Julie Wootton (pictured right).
Wicksteed Park Max Appeal Member Meetup, Sunday 21 August 2016
Hello Everyone We are planning a summer meet up, Wicksteed Park, near Kettering, Northamptonshire on Sunday 21st August 2016 Time to be confirmed There seems to be a lot of different things to do, whatever you want to make of your day out We hope you can come and join in for a MaxAppeal Summer meet up We really look forward to seeing you
Waddecar Youth Activity Weekend, Friday 12 August 2016
Max Appeal Youth Activity Weekend Friday 12th Monday 15th August, 2016 Waddecar Activity Centre, Wood Top, Goosnargh, Preston, PR3 2 EU Max Appeal invite you to attend a youth activity weekend for 7 25 year olds based at Waddecar, in the Forest of Bowland, an area of outstanding natural beauty. The weekend is designed to help young people relax and enjoy some time together and it is an opportunity to meet other children and young people affected by 22q. 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, shooting, pond dipping, climbing, hike nature walk, team games, crafts, bush craft and a challenge course. PLEASE COMPLETE A BOOKING FORM FROM THE MAX APPEAL WEBSITE, PLACES LIMITED AND ACTIVITIES SUBJECT TO CHANGE BY THE ORGANISERS.
Max Appeal Ebay Auction
The eBay Small charity auction starts today and runs through to the 26th June. Our auction items are as follows 1 no - Class 365 train driving simulator experience 1 no - Class 319 train driving simulator experience 1 no - Stevenage FC football shirt signed by Charlie Adams 2 no - Stevenage FC footballs signed by the first team
Parallel London, Sunday 04 September 2016
& Free Family Festival
London to Paris Bike Ride, Tuesday 06 June 2017
London to Paris Bike Ride 2017 Dates:
Cranham Camp, Friday 26 August 2016
MAX APPEAL YOUTH ACTIVITY WEEKEND 26 - 30TH AUGUST, 2016 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, hike/ nature walk, team games, cookery, crafts, bush craft, dam building and challenge course.
22q at the Zoo 2016
As you were probably aware on Sunday 22nd May 2016 Max Appeal helped host a 22q at the Zoo worldwide day.
Accessing services for 22q11 DS patients
Please tell us about your experiences of accessing services for your healthcare needs in relation to 22q11 DS. We have drafted a survey to help us identify the healthcare costs associated with 22q11 DS. We hope to present information to the APPG for 22q11 Syndrome at parliament and it will help us build a case for the support needed by those affected by 22q11 DS. We would like to gather at least 100 responses, so please take the time to answer the questions. Thanks for your help. Here is the link;
MG Car Club Run
Great Manchester Run 2016, Sunday 22 May 2016
Team Lucia are taking part in the Manchester 10K on the 22nd May
Duck Fest, Saturday 11 June 2016
Lisa Marsh and Amanda Burgoyne are running a stall at an event on the 10th June and will be raising money for Max Appeal.
Global Challenge Events
We have a number of challenge events coming up this Autumn, I have listed them below, please email us if you are interested and I will send you the brochure. email@example.com · Hadrian's Wall (Great for beginners and a very historical trek) · Ben Nevis (Conquer the UK's highest mountain) · Snowdon (Conquer Wales's highest mountain) · 24 Peaks (A very tough trekking challenge!) · London to Paris (Iconic bike ride!) · Lands' End to John O' Groats (UK's toughest bike challenge) TrekFest. 4/5 June The Beacons location has about 250 places left. The Peaks 3/4 September has about 300. Both locations will sell out in the coming months it's that popular!
Day on the Beach, Scarborough, Sunday 24 July 2016
Hi everyone, the annual Scarborough day on the Beach meet up will be on Sunday 24th July this year. This will be the 5th year of our meet up and is open to all Max Appealers new and old. It is a very friendly day so please come along if you are free. We shall meet up on the North Beach, more details to follow nearer the time. :-
British Congenital Cardiac Association (BCCA), Wednesday 23 November 2016
Julie Wootton will be attending the British Congenital Cardiac Association BCCA Annual Conference.
Dave Jones completes the Virgin London Marathon on behalf of Max Appeal
On Sunday 24th April my husband, Dave Jones took to the streets of London to compete in the 2016 Virgin London Marathon, running on behalf of Max Appeal. Our son Alex has 22q, he is 12 years old and we have been members of Max Appeal since he was diagnosed at 6 years old. Dave ran in the Birmingham half marathon for 2 consecutive years, then successfully completed the Great North Run for Max Appeal last year. After running the GNR, he decided in November that he wanted to run the London Marathon for Max Appeal.
Memoirs of a Kiltwalker
Team Max Appeal put their best foot forward on Sunday 24th April, taking part in the Glasgow Kiltwalk in aid of Max Appeal and all of our 22q'ties! 26 miles, from Hampden to Balloch, through the streets of Glasgow, Clydebank and Dumbarton to the shores of Loch Lomond, kilts and tartan swinging as far as the eye could see, Ian and Moira Stephenson walked, limped and finally crawled over the finish line 7 hours later.
Sci Fi Selfies
Katie & Tracey had a day at a local Sci Fi event and managed to get some great pictures with the stars and the Max Appeal selfie poster. Jon Campbell, Dan Starkey, Barnaby Edwards, Garrett Wang and Simon Fisher Becker
CCP (UK) Annual Conference 2016, Manchester, Wednesday 08 June 2016
Cardiovascular Care Partnership CCP UK(patient arm of the British Cardiovascular Society) are pleased to announce that we will be holding our fifth Annual Conference on Wednesday, 8 June at Manchester Central. Our Conference be held within the BCS Annual Conference.
10th Biennial International 22q11.2 Conference-Sirmione, Italy, July 2016
Sponsored for the first time by the 22q11.2 Society and entitled '22q Back to the Future', the 2016 biennial meeting harkens back to the inaugural 1998 retreat conference nestled in the hills above Strasbourg, France. Featuring a mix of outstanding invited speakers and selected abstracts, presenters will include top scientists and healthcare providers from around the globe. Hotel Acquaviva will be the amazing venue for this all-inclusive resort meeting on the stunning banks of Lake Garda with easy access by plane from Milan, Venice, or Verona and local transport by train, car, taxi or bus.
APPG for Disability Right - Meeting Wednesday 13th April 2016
Julie Wootton will be attending.
Govia Thamleslink Railway Charity Week - Monday 11th April 2016
Govia Thameslink Railway Charity Week. A fun filled week of fundraising. Max Appeal would especially love your help On Tuesday 12 April, GTR's Choir will perform at East Croydon station from 16.00 & On Wednesday 13 April, everything is booked for cycle the distance from Brighton to St Neots, via Blackfriars, using two exercise bikes. It will be at Blackfriars station near the entrance, by the underground, from 08.00 to 18.00, with the aim of cycling the 122 miles and collecting donations from passengers too. If we make it half way we will will donate an additional £387 to the pot, and if we can complete the whole distance this will be topped up to £700 figures chosen to reflect our new units coming into service.
Polwarth Nearly New Sale - Saturday 23rd April 2016
All ages of childrens clothes and toys. Nursery equipment, maternity wear, High chairs, buggies & pushchairs. Garden toys and much more Over 5000 items for sale.
Charity Night - A Huge Success
On Saturday 19th March we held a charity evening in aid of Max Appeal as Dave Jones is running the London Marathon on April 24th. We had a local band play called The Ron Jeremy Band, sold 120 tickets, held a raffle and an auction. The night was a huge success and we raised in excess of £2,000. Thank you so much to our friends Helen and Noel O'Donnell who donated use of their apartment in Spain which we auctioned and raised £300 and also the kind donations from our friends for the raffle prizes. Also another huge thank you to our friend Steve Bignell for some fantastic DJing. Dave's Just Giving page is still running and that's now hit over £1,000. See link for Just Giving page:
Prudential Ride London - Saturday 30th July 2016
Entries to the 2016 Prudential RideLondon-Surrey 100 Peloton Relay are now open! This team challenge is open to UK-based businesses and charities. The Peloton Relay requires a team of four riders representing the same organisation or charity. The team works together to ride the 100 miles as follows:
Max Appeal Selfie Posters
Moira got together with a bunch of friends from Canada, Australia and the US in Disneyland, California and took a group selfie for Max Appeal. "When the photo was taken we all counted 1, 2, 3 and then shouted MAX!!! Even Mickey turned to see what we were up to! Everyone in the group will share the photo and help raise awareness of 22q."
Sirmione Conference Venue Hotel is now fully booked
Hotel Aquaviva, the venue for the International Conference in Sirmione, is now fully booked for the entire week.
Congenital Cardiac Nurses Association Conference - Wednesday 6th July 2016
Congenital Cardiac Nurses Association Conference, which will be held on 6th July here in Worcester. More details to follow.
The Colourthon Event - Saturday 2nd July 2016
The Colourthon events are staged in and around Chalkwell Park in Southend by Southend Round Table as a fundraising initiative for various registered charities, full information is available from our website - www.colourthon.org.
Calling all Fundraisers.. Max Appeal Needs Your Help.
We are a small charity with a massive job and we can't run it without your help in raising money and awareness. We URGENTLY need your help in fundraising, last year our 22q at the Zoo cost us £3,000 to organise, new member packs cost £10, and our national helpline costs approx. £500 per year amongst many other daily running costs.
Max Appeal Fundraising Sponsorship Form
We now have a sponsorship form which we can send out to you for your fundraising events- just email me on firstname.lastname@example.org to obtain your copy. Or, if you prefer to set up a just giving page, just go to our website, and click fundraising to follow the link.
Small Charities Week - June 2016
We have the opportunity to auction items on Ebay through this Year's Small Charity Week. If you think you could get hold of any goods which would 'fit the bill' then please lets hear about it. If anyone would like to work on getting hold of items and have any connections they can use it would be great. We can put in up to 10 items.
22Q at the Zoo - Sunday 22nd May 2016
Mark your Calendars for the sixth annual 22q at the Zoo for Sunday May 22nd, 2016 This very special event gives families, friends, and professionals a chance to socialise, network and raise the public profile of 22q deletion and duplication syndromes. In 2015 zoos around the world in over 100 cities witnessed an extraordinary gathering of 22q families. The 5th Annual 22q at the Zoo / Worldwide Awareness Day took place on Sunday, May 17th, 2015 spanning 6 different continents. An estimated 10,000 participants attended.
The Kiltwalk Glasgow - Sunday 24th April 2016
Moira Stephenson is taking part in this: To donate please click below:
Max Appeal Selfie Poster
Julie Jones son Alex who has 22q, used our new Max Appeal Selfie poster whilst skiing in Ruka Finland. At the moment temperatures are -10 and we are so proud of him ... he has been down red and blue runs, and off piste !!! He has no fear !! To download your own copy, please press the link below.
(Still) learning to cope with my daughter's health problems - Sam Radford
It is nearly two years since I first wrote publicly about my struggles with coming to terms with my daughter's chromosomal disorder (22q11.2). Eloise is soon to turn seven, and I thought it was about time to try and capture some of my thoughts and feelings again.
The British Congenital Cardiac Association (BCCA), Wednesday 23 November 2016
Annual Scientific Meeting 2016
Great North Run - Sunday 11th September 2016
Max Appeal has secured a Bronze + package for the Great North Run 2016, guaranteeing 35 charity places our most ever and a marquee. Email email@example.com,uk for an entry form. The Mini and Junior runs are the day before too!
Young Ivy wins bravery award
Sleaford Standard Newspaper: A youngster affected by a genetic disorder has been honoured for her bravery at the Yorkshire Children of Courage Awards (in partnership with Lincolnshire).
Order your very own special collection of chrysanthemums prepared by John Bawden, Head Gardener at Coombe Lodge, Blagdon and Chelsea Flower Show winner. John has prepared these plants especially for Max Appeal. All proceeds are being donated to Max Appeal. Order via the Max Appeal Shop.