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.