The British Congenital Cardiac Association (BCCA), Wednesday 23 November 2016
22q11 APPG Meeting, Westminster, 8th December 2015
APPG
Professor Peter Scambler , Professor of Molecular Medicine, ICH Development Bio & Cancer Programme, Institute of Child Health, Faculty of Pop Health Sciences, joined us for the APPG meeting as our guest speaker. He shared many aspects of his presentation which he made a Cardiff University at the Max Appeal conference with the MP's who attended.
They were able to learn more of the incidence of 22q11 Deletions and Duplications as detailed in the recent Italian study released this year.
Max Appeal was represented by Julie Wootton, Claire Hennessey, Carla Attwood and Julie Jones.
Max Appeal Conference Cardiff University, Saturday 5th December 2015
22q11 Parent Conference
_large.png){kind=logo}
It was great to welcome so many parents and professionals to our conference at Cardiff University. Many travelled from far and wide to attend. We were very lucky to have use of such wonderful facilities at the Hadyn Ellis Building home of the National Centre for Mental Health and the ECHO Study. We were also grateful to Genetic Disorders UK and their Jeans for Genes Day in providing funding for the day.
It takes alot of work by the Max Appeal team to organise these events and we were all hoping ( and with fingers crossed) that things were going to run smoothly on the day. Everyone got involved in setting up a reception desk, Max Appeal stands, directed car parking and liaised with the technical guys and staff at the centre who were tasked with looking after us for the day. We were planning to link Andy Gennery, a member of the Steering Group for the much acclaimed Consensus Document for 22q11 DS to a Skype connection ( a first for us at conference). It seemed a good way to introduce the concept of 'virtual clinics' and as Andy was on call at the Great North Children's Hospital in Newcastle he wasn't able to join us in person.
The first set back of the day occurred when we heard all flights out of Dublin had been cancelled due to adverse weather conditions and Alison Doyle, Education Psychologist who was due to be with us had to head home. She improvised quickly and recorded a voice over for her presentation and again joined us through a Skype connection. Thank goodness for technology!
We are extremely grateful to all the professionals who joined us to share their knowledge about 22q11 DS and enlighten us parents on some of the latest thinking and research on the condition.
The first set back of the day occurred when we heard all flights out of Dublin had been cancelled due to adverse weather conditions and Alison Doyle, Education Psychologist who was due to be with us had to head home. She improvised quickly and recorded a voice over for her presentation and again joined us through a Skype connection. Thank goodness for technology!
We are extremely grateful to all the professionals who joined us to share their knowledge about 22q11 DS and enlighten us parents on some of the latest thinking and research on the condition.
Julie kicked off the proceedings and first up was Professor Peter Scambler, Professor of Molecular Medicine, who discussed the latest thinking on 22q11 DS from a genetics point of view and shared some new research findings published this year from an Italian study on the incidence of 22q11 Deletions and Duplications.
David Drake Consultant Cleft & Maxillofacial Surgeon, South Wales Cleft Team discussed some of the aspects of palate surgery for 22q11 Syndrome patients and how related services and the 22q11 multi disciplinary clinic at Cardiff operates.
We then heard about more research from the team at Cardiff University working on the ECHO study. Many of the researchers joined us for the day and Professor Marianne van den Bree shared their findings so far.
Debbie Sell GOSH shared her research project on patient experiences.
As well as parents being able to ask questions and comment on the topics.
Some time to relax and catch up with friends and meeting up for the first time and catch up with professionals to find out more
Sharing workshop sessions and using the facilities available
We were all heavily engaged and even though there was plenty of eyes on the time we soon found we over ran on some of the sessions.
I hope those who attended found it useful and informative. We will be posting some of the materials on the Max Appeal so if you weren't able to be there in person there is information available to help families on their 22q11 journey.
I hope those who attended found it useful and informative. We will be posting some of the materials on the Max Appeal so if you weren't able to be there in person there is information available to help families on their 22q11 journey.
Chris Ryans Review of the Day
Attached is a review of the day, written by Chris Ryan, who attended and is a Max Appeal member.British Sub Aqua Club.
Fancy a go at Scuba Diving ??
One of our members has offered to give you a free scuba diving lesson:
Details as follows:
Member, Jay Benson has offered Max Appeal some scuba diving opportunities at his local club.
The club sessions are on a Thursday evening from 8.30 - 9.30 pm. The leisure centre is in Ashbourne, Derbyshire.
It is a pool session and the main restrictions would be epilepsy, ears and behaviour. Anyone who would like to take part will need to be able to swim reasonably well - about 50m.
The club can accommodate around 6-7 people in a night. Siblings / carers are welcome to take part as well.
Please forward your interest to info@maxappeal.org.uk
Max Appeal Welcomes Julie Jones to the Team
Introducing Julie Jones to the Max Appeal Admin team
My name is Julie Jones and I can't wait to start this new chapter in my life.
I have recently been made redundant, and this great opportunity arose with Max Appeal.
I am married to Dave Jones and have 2 siblings, Amy and Alex. Amy is 14 and Alex is 11, he has 22q, which we found out when he was 6 years old. He currently attends a main stream school with additional support.
My role will be to support Julie Wooton, Claire Hennessey and Steph Jasper, administering the ISP (Information Standard Process document), taking minutes, co-ordinating the APPG (All Party Parliamentary Group), attending meetings at the House of Commons, organising trustee meetings and other events for Max Appeal.
Max Appeal is very close to my heart as they have supported us since Alex was diagnosed, and therefore I can't wait to get stuck in with the rest of the team.
Max Appeal Christmas Cards
Max Appeal Christmas Cards
£4.00 for pack of 12 or 4 packs for £12.00 Free P&P
A HUGE THANK YOU TO Nigel at Tulleys Print, for providing the Max Appeal Christmas cards for no charge.
http://www.tulleysprint.co.uk
Look who Mark Tripp bumped into...
Max Appeal Selfies.. Look who we bumped into
Ps in case your asking who's that, it's ex Watford, Liverpool, Man City, Portsmouth and England Goal keeper David James
We will in the coming weeks be producing a Max Appeal selfie poster for you to use when out and about...Let's see who can "bag" the most famous person or landmark.
100,000 Genomes Project
100,000 Genomes Project
I am a researcher from Oxford University looking for people to take part in the 100,000 Genomes Project.
The 100,000 Genomes project funded by the Department of Health will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.
We are looking to interview people who have been invited to take part in the Genome 100,000 Project (including if you have declined to take part in the project and decided it wasn't for you). We would like to interview you about your experiences, feelings and thoughts about genomic research. We would then (with your permission) like to put extracts from your interview on our website Healthtalk.org (in video, audio or written only format). If you are interested and would like further information or have any questions at all, please get in touch with me Melissa.stepney@phc.ox.ac.uk or Sara Ryan sara.ryan@phc.ox.ac.uk
Thank you for your time.
Best wishes,
Melissa
Donating with Payroll Giving is a simple and easy way to give to Max Appeal from your salary
Donating with Payroll Giving is a simple and easy way to give to Max Appeal from your salary
A donation to Max Appeal each pay day will help us continue our work supporting children and their families affected by 22q11 Syndrome
What is Payroll Giving?
Payroll giving is a simple, tax-efficient scheme which allows employees to donate to any UK registered charity of their choice directly from their salary, or occupational pension, before tax.
Companies often ask their employees at the beginning of the year or the beginning of the tax year if they would like to make any regular deductions to a charity from their monthly salary.
If you donate to Max Appeal through your salary, the Government will top up your gift based on your tax rate.
See how giving as you earn works
Many companies' Human Resources Department's are able to organise it for you. Just let them know how much you would like to donate each month.
Research shows that offering Payroll Giving to employees improves company image and increases staff morale, retention and recruitment.
UK-PIN Meeting in Belfast November 2015
Hilary Joyce one of Max Appeals Trustees, attending the UK PIN Meeting
The UK-Primary Immunodeficiency Network Meeting is held every two years and is the main forum for presenting research and information in the UK. Once again MaxAppeal had a stand to promote our work and raise awareness of the 22q11DS among the clinicians and nurses attending.
This time I was joined by Gillian Cassidy (on the left), herself a parent of a child with the deletion who lives in Northern Island and who works with MaxAppeal.
Although the meeting did not have any 22q related talks to update our knowledge about the problems in children our stand was well sited on the way to one of the refreshment areas and we could chat to people as they stood in line.
This meeting also gave recognition to one of our Trustees, Dr Kumararatne who was the moving force behind the Consensus Document.
Although the meeting did not have any 22q related talks to update our knowledge about the problems in children our stand was well sited on the way to one of the refreshment areas and we could chat to people as they stood in line.
This meeting also gave recognition to one of our Trustees, Dr Kumararatne who was the moving force behind the Consensus Document.
I worked with Kumar for almost 25 years but until I read the resume inside the menu card at the dinner when the award was presented I had not realised the full extent of his achievements. Max Appeal and the Consensus Document were mentioned in this and reference was made again in the speech made by Prof Marshall before handing him his award. This is only the second time that UK-PIN has made an award for Life Time Achievements. In Kumar's reply he mentioned that when he was studying medicine lymphocytes were considered not to have an important role in the immune system!
For those of you puzzled by the background the dinner was held in the historic Crumlin Road Jail, now a tourist attraction. On the left is Dr Paul Davies from Cardiff and on the right is the official photographer desperately trying to persuade him to face the camera!
Oh, and typical of Kumar...he forgot to take the award away with him! Thankfully someone noticed the box and handed it back to him the next day.
Kumar's Lifetime Achievement Award Citation
Achievements
Achievements
Check out what our fantastic 22q kids are upto:
Our wonderful 22q kids make us proud everyday with their fantastic achievements. So lets SHOUT it from the rooftops and share your successes....
British Society of Immunology, Thursday 10 December 2015
NHS England Congenital Heart Services, Wednesday 09 December 2015
Young people and Adults - let us know about you!
The next APPG meeting is on 8th December and when we go to speak to the politicians we would like to have some concrete and current information to go with.
So, please respond to this questionnaire. It's 10 questions about your education achievements, your work and how you live. It should take less than 10 minutes to complete.
I know there's always a new questionnaire.. but you are SO interesting! Also it is important that MPs get to hear about you.
Go to questionnaire
24 Hour Treadmill Run for Max Appeal
24 Hour relay run. 10th December 2015
What are we doing?Sean O'Regan, Dan McNamara, Ray Humphreys and Bobby Rennoldson are aiming to run continuously for 24 hours in a relay format on the 10th December. This will mean each participant will run for 6 hours overall. As a team we are aiming to cover a minimum distance of 250km (155 miles approx.) in 24 hours. This is approximately the same distance as London to Cardiff. We are also aiming to raise a minimum of £1,000 for our chosen charity but obviously the more we can raise the better.
Full details on how they got on to follow .
To Donate:
https://www.justgiving.com/maxappealrun/?utm_source=Twitter&utm_medium=fundraisingpage&utm_content=maxappealrun&utm_campaign=pfp-tweet
Introducing Mark Tripp, Max Appeal's newest Trustree
How I became hooked on Max Appeal
As a family we found Max Appeal on the day that Adam was formally diagnosed with 22q11 ds, thankfully Google was kind to us that day as we typed 22q11 into a search engine, We'd had a rocky ride as a family upto this point but a 30 minute conversation with Claire Hennessy was enough to change that and start to make some sense of it all, we were determined to learn all we could early on and we were especially lucky to come onboard just as the consensus document was being launched, who would have guessed on that day it would be the first of many trips to Parliament to wave the Max Appeal flag.
We have been made to feel part of the family since day one and it has helped us all immensely as we come to grips with Adam's diagnosis and look to his future, to know that help is only a phone call or key stroke away is very comforting.
Through the meet ups and Zoo days and of course through Facebook we have met and made many wonderful friends. Because of this I wanted to give something back for a cause and a charity that I feel passionate about, the more events we attended and the more families we met online the more this desire has grown, through my work connections I was thrilled to have got the 'Max Appeal Train' for us all and to be able to continue the connection between Max Appeal and GTR has been amazing.
It has certainly made me want to do more and so back in October I was lucky enough to be invited to attend the latest trustees meeting where I was co-opted onto the board of trustees, I'm hoping that at the AGM in December my position will be formalised by the members as the Max Appeal family has stood by us and helped us through some tough times, whilst I'm able too I want to repay this debt and help work towards improving the lives of all our Children, teens and of course adults.
I look forward to seeing friends both new and old at the conference in December and to help Max Appeal keep growing in strength.
22Q11 DS APPG, Tuesday 08 December 2015
GOSH, National study Mental Health Needs, Tuesday 17 November 2015
Claire will be attending a Steering Group meeting on 17th November for the GOSH, national study focussing on the mental health needs of children and young people with 22q11DS. The aim of the study is to improve the information and access to care and support available to children and young people with 22q11DS.
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 paul@maxappeal.org,uk for an entry form.
The Mini and Junior runs are the day before too!
Carol Tripp is hosting a 'Have a Brew for 22q' event, 12th November in Kyrenia, North Cyprus
First International Have a Brew event.
Carol Tripp is hosting a 'Have a Brew for 22Q' event on the 12th November in Kyrenia, North Cyprus, she hopes to have 30 plus attendees from her local craft group and they will be selling cakes and holding a raffle, the local English speaking newspaper has said they will attend too, to write a small article.
Full write up below.
The local newsletter write up...
Carol (Trip) brought in a 'The Times' article, which was starting an awareness campaign for a child's little known-about and little-recognised (also by the medical profession at large in the U.K.) condition. Her own grandchildren have this, known officially as '22q11 syndrome'. The charity is MAX appeal.On 12th November we shall have a coffee morning at Amore, with Carol providing literature and information sheets on this children's serious health matter. Members have said that they shall bake and bring cakes and biscuits to help support this appeal. SOOOOOOOOOOOO Ladies, over to you.
Update:
My Grandson Adam suffers from 22q11 deletion syndrome. His family, my son Mark and his wife Kelly have received a lot of support from Max Appeal , there were very dark days at times for them, but the support they have received from the charity has helped them so much.
So with this in mind I felt honoured to be asked to hold a coffee morning, in North Cyprus. I belong to a craft group where I thought would be the best place to spread the word and hopefully raise some money for the Max Appeal.
The support I received from this group of expats about 30 in total made me feel very humble. The homemade cakes, biscuits ,mince pies and all sorts of goodies these ladies made were beyond belief . Enough to have with coffee and to raffle later in the morning . All of which raised 485 Tl (local currency) which when exchanged into sterling meant £100 .
I gave a talk on 22q11.2 and what effects just a small piece of missing chromosome can have on these children. I also spoke of the charity Max Appeal and the help and support they give families, as I know they have helped my son's.
m glad I have been able to support Max Appeal.
Have a Brew, Wonderworld Softplay, Kirckaldy, Sunday 29 November 2015
Sarah is organising a get togetherpartyHave a brew at Wonderworld Softplay, Kirckaldy on Sunday 29th Nov 1.30 pm to 3.30pm.
Overlaps....Paul Willgoss MBE...
It's time to get trekking: Four Multiday walks, one each in England, Scotland, Wales and Northern Ireland.
It's time to get trekking: Four Multiday walks, one each in England, Scotland, Wales and Northern Ireland.
With a rucksack on my back and a Children's Heart Federation flag waving proudly, sponsor me here: http://uk.virginmoneygiving.com/madmeanderings (as normal I pay my own travel and gear costs, every penny goes to CHF to help kids born with their heart conditions)
uk.virginmoneygiving.com/madmeanderings
Overlaps
Overlaps...I like overlaps, they are where fun things happen – in rugby or in the world of charities. As you know not every kids with 22Q has a heart condition, and not every kid with a heart condition has 22Q but the two areas do overlap. So, when Julie asked me to put up the stand for MaxAppeal at the Children's Heart Association Information Day I was more than happy to do so...
CHA is the charity looking after kids, teens and increasingly adults in the North West of England who've had their heart conditions from childhood. The Information day CHA put on covered that broad range of areas; with talks on congenital heart surgery in adults, how to communicate with children effectively, what vaccinations are and why they are important – unlike many information days this was geared to be interactive, parents, teens and adults could and did ask the professionals questions and get answers. The afternoon was split between streams; one for adults, one of how drugs work, the ever popular CPR hands on session and a chance for parents to ask a panel of a cardiac liaison nurse, a couple of parents and an adult anything and everything... (I was the adult, so know exactly how wide ranging those conversations were – from playing sport, including rugby, through to working in charity shops and how to prep the kids for taking over the appointments – they will almost certainly have to take charge sometime).
In the breaks the information stands were busy on those overlaps, sharing information – I don't know a lot about 22Q deletion, but I can remember the basics Julie has told me over the years and point people in the right direction of the correct websites.
The consensus document was a hit, as was the knowledge that MaxAppeal exists, and in the spirit of overlaps, if anyone is interesting in the CHA then we can be found on Facebook – both a group for those in the north-west and one for those who want to keep in touch from outside the area – all of our news is posted on our website - https://heartchild.info/web/
Paul
Paul Willgoss MBE
Adult with Congenital Heart Defects
Vice-Chair Liverpool Branch CHA
Vice-Chair Children's Heart Federation
Trustee – Cardiovascular Care Partnership
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).
Writes the paper:
Ivy Mitchell, aged three, of Helpringham was born with 22q11 deletion or DiGeorge syndrome.
The awards, run by the St James Place Foundation, were held at New Dock Hall in Leeds on October 16 and Ivy won the award for outstanding bravery in the 0-12 year category.
The night featured celebrities like the Chuckle Brothers and many of the sponsors.
Mum Dorne said: 'It was a privilege to be surrounded by other children that continue to smile in the face of adversity and we are proud beyond words to have our Ivy recognised for the challenges she has faced and overcome.'
For full story, please follow link below
Ivy's Newspaper Article
Ivy Mitchell, aged three, of Helpringham was born with 22q11 deletion or DiGeorge syndrome.
The awards, run by the St James Place Foundation, were held at New Dock Hall in Leeds on October 16 and Ivy won the award for outstanding bravery in the 0-12 year category.
The night featured celebrities like the Chuckle Brothers and many of the sponsors.
Mum Dorne said: 'It was a privilege to be surrounded by other children that continue to smile in the face of adversity and we are proud beyond words to have our Ivy recognised for the challenges she has faced and overcome.'
For full story, please follow link below
Ivy's Newspaper Article
For more information about St James's Place Foundation and what they do, please click on the link below:
St James's Place Foundation
Have a Brew for 22q, Henderson Church Hall, Sunday 22 November 2015
Have a Brew for 22q in Kilmarnock
Raising Money for Max Appeal
Sunday 22nd November 2015 - 2-4pm
Henderson Church Hall, London Road, Kilmarnock
£3 entry £1 under 10's
includes tea coffee and cakes
Crafts and gift stalls.
Please contact Max Appeal should you have any queries
Houses of Parliament - Max Appeal Family Day out - 26th October 2015
Tour Of Westminster - Max Appeal Day Out
An excellent day spent in Parliament organised by Mark Tripp - thank you from us all Mark.
We had the pleasure of a really interesting tour round hosted by the office of Mark's MP Alistair Burt.
After walking through the massive Great Hall we met up with Alistair's staff in the meeting area where all the press interviews are done on all the news programmes on TV. From there we were taken down to the House of Lords where we saw the Queen's robing room where she is dressed prior to the State opening of Parliament and then through into the House of Lords itself.
.
We then went down to the House of Commons which was equally as interesting. You could almost feel the history in the place reach out and touch you.
After the tour we retreated into one of the meeting rooms where Alistair Burt and Jack Lopresti hosted a question and answer session. They were both really good, answering lots of questions. The one statement that stays in my mind was how Alistair told us his latest priority was the amount of sugar in drinks and how this was interest was generated by Jamie Oliver asking the question. His point was that if you get a celebrity to champion your cause then the MP's respond....... If anyone out there has any celebrity friends please get them involved in Max Appeal!
Martin.
Name the Airplane - Max Appeal
Name the Airplane - Max Appeal
Thomson are holding a competition to name an airplane.
We've got a train named Max Appeal, so lets all get voting and see if we can get an airplane too.
Really easy, please click link below and press Vote.
We've only got until the 16th November.
Thanks.
nameourplane.com/name/max-appeal
Lotherton Hall - Max Appeal Family Day Out - 28th October 2015
Lotherton Hall - Max Appeal 22q Family Day Out - 28th October 2015
A lovely a 22q family meet up today at Lotherton Hall, it would be fair to say the weather wasn't kind.... in fact it lashed it down to start off with so we had to retreat to the cafe for a coffee and a bun smile emoticon All came good in the end though, lovely people!
Max Appeal regularly organises family meet up days. If you would like to help arrange something in your area, please do get in touch. info@maxappeal.org.uk
Primary Immunodeficiency Network UK, Thursday 19 November 2015
Hilary attending on behalf of Max Appeal
19th& 20th November UK PIN UK primary Immunodeficiency Network in Belfast.
Outcome to follow.
19th& 20th November UK PIN UK primary Immunodeficiency Network in Belfast.
Outcome to follow.
BCCA Meeting, Tuesday 17 November 2015
Max Appeal will be attending.
17th & 18 November BCCA meeting in Cardiff British Congenital Cardiac Society – promoting awareness of 22q11DS and disseminating consensus document to cardiac surgeons, cardiologist and specialist cardiac nurses.
17th & 18 November BCCA meeting in Cardiff British Congenital Cardiac Society – promoting awareness of 22q11DS and disseminating consensus document to cardiac surgeons, cardiologist and specialist cardiac nurses.
NICE neurological care standard, Wednesday 11 November 2015
Max Appeal to attend NICE meeting to look at neurological care standards. Thinking about getting awareness at the highest level ie NICE about the huge incidence of psychosis for people with 22q11DS.
Update to follow.
Update to follow.
Scottish Congenital Cardiac Standards - consultation now open
From 26th October to 15th December your opinions can be heard!
Scottish Cardiac Standards Consultation
Sympathies to all at Cults Academy, Aberdeen
Our thoughts are with staff, pupils and their families, and the community of Aberdeen following the devastating incident at Cults Academy.
Max Appeal feels a very close affinity to the school as it has been a great supporter of Max Appeal for many years because one of their former pupils, Max Lechner, was affected by 22q11DS and sadly died following heart surgery.
The Max Appeal Adam posters were the inspiration for the Dutch support group
www.Steun22q11.nl campaign for raising awareness of 22q11
The Max Appeal Adam posters were the inspiration for the Dutch support group's( www.Steun22q11.nl) campaign for raising awareness of 22q11. They liked the idea and made their own version to help raise awareness in Holland. They have created posters with a number of children's images and they have asked their members to share them in their local communities and raise awareness of 22q11. Good ideas spread far and wide.
Brussels 10th & 11th October 2015 Relais 22 European Conference
European Conference 2015
Paul and Julie Wootton landed in Brussels on a very bright and sunny October morning ... and found that Airforce 1 was parked up just the road, and wondered if Barack would be joining the European Network conference being held by Relais 22, which is the French speaking group in Belgium. Claire Hennessey joined them later.
www.relais22.be/
Prior to the beginning of the meeting a number of the groups representatives got together with Stephan Eliez and Bronwyn Glasser, psychiatrists from Geneva, to discuss the possibility of forming a European Alliance of 22q groups. The suggestion was eagerly agreed and Claire Hennessey volunteered to be on the committee of the group with Julie Wootton being the chair of the web site content group. This will, of course be a work in progress, but it was felt that this worked well as it was in parallel to the 22q Society, which is the international group for professionals with an interest or expertise in 22q and for which Max Appeal acts as the secretariat.
The European support groups agreed to meet every other year under the banner of the new association, with Anne Lawlor of the Irish group offering up to be the first venue in 2017 and the group from Barcelona will be 'bidding' to hold the meeting in 2019. The 22q Society meetings will be held on even years with Sirmione, Italy in July next year. It was proposed that there should be a membership fee, dependent upon a group's income. It was also really good that the Max Appeal consensus document was yet again held up as being one of the best sources of information for people with 22q, and a number of groups were interested in being able to translate it to their language as Sixto Garcier has for the Spanish group.
The chair of the group is Paul Havelange, and it has to be said that he pulled together a really great programme with speakers from Philadelphia, Rome, Tel Aviv, Maastricht, Geneva, Utrecht and Lyon in addition to those from Belgium. The meeting was run mostly in English but with simultaneous translations through headsets in French, English and Dutch.
There was a great focus on development and psychosis, with emphasis on spotting signs of not coping. A theme running through was that IQ scores are important to be monitored every couple of years because a decline in cognitive function (IQ dropping) is a sign of the onset of psychosis. This is something that is not often (or sometimes ever) done with children and young people in the UK. Stress and anxiety also featured prominently, and how this affects performance at school and socially. Coping strategies and transitional phases were discussed at length, and this is something that will be incorporated in to the Max Appeal meeting in Cardiff on 5th December.
This highlights the benefits of attending meetings; keeping up to date with progress being made in other countries is really important. It is also lovely to meet up with people who run groups like Max Appeal and exchange tips and gripes. The new Dutch leaders made an impact with their bright orange tops, no-one was confused about which country they represented!
This is the web site address for Relais 22 and the slides from the presentations should be available there shortly.
The European support groups agreed to meet every other year under the banner of the new association, with Anne Lawlor of the Irish group offering up to be the first venue in 2017 and the group from Barcelona will be 'bidding' to hold the meeting in 2019. The 22q Society meetings will be held on even years with Sirmione, Italy in July next year. It was proposed that there should be a membership fee, dependent upon a group's income. It was also really good that the Max Appeal consensus document was yet again held up as being one of the best sources of information for people with 22q, and a number of groups were interested in being able to translate it to their language as Sixto Garcier has for the Spanish group.
The chair of the group is Paul Havelange, and it has to be said that he pulled together a really great programme with speakers from Philadelphia, Rome, Tel Aviv, Maastricht, Geneva, Utrecht and Lyon in addition to those from Belgium. The meeting was run mostly in English but with simultaneous translations through headsets in French, English and Dutch.
There was a great focus on development and psychosis, with emphasis on spotting signs of not coping. A theme running through was that IQ scores are important to be monitored every couple of years because a decline in cognitive function (IQ dropping) is a sign of the onset of psychosis. This is something that is not often (or sometimes ever) done with children and young people in the UK. Stress and anxiety also featured prominently, and how this affects performance at school and socially. Coping strategies and transitional phases were discussed at length, and this is something that will be incorporated in to the Max Appeal meeting in Cardiff on 5th December.
This highlights the benefits of attending meetings; keeping up to date with progress being made in other countries is really important. It is also lovely to meet up with people who run groups like Max Appeal and exchange tips and gripes. The new Dutch leaders made an impact with their bright orange tops, no-one was confused about which country they represented!
This is the web site address for Relais 22 and the slides from the presentations should be available there shortly.
Max Appeal Parents conference for 22q11 syndrome, Saturday 05 December 2015
Max Appeal Parents conference for 22q11 DS, Saturday 05 December 2015
Max Appeal Parent Conference - Saturday 5th December
We will have representatives from the Cardiff 22q11 DS Clinic, information on research studies from Cardiff University and Great Ormond Street Hospital for Children, as well as other professionals expert in the management of 22q11 DS.
We expect the programme to begin from around 9.00am and finish by 5.30pm.
Cardiff Conference
We are pleased to announce the details for the Max Appeal Conference on 5th December at Haydn Ellis Building, Cardiff University!
Please note that there will be no facilities for childcare because appropriate childcare has become increasingly expensive over the years. The cost of the conference is just £10 per person because Max Appeal has received support from Cardiff University and Jeans for Genes to be able to offer this event to you at such a heavily subsidised rate.
The teams from the Great Ormond Street, Addenbrooke's, Bristol,Newcastle and Cardiff hospitals' clinics are represented, along with researchers from Cardiff University. They are presenting a variety of topics ranging from the services they offer to the research they conduct. There is no obligation for anyone to participate in any research programme, but evidence from them helps promote better care and knowledge in the future. Workshops are available for people to discuss a number of topics in smaller groups.
Max Appeal will also hold its AGM during the meeting, which will be a very brief affair but will enable people
to know a little more about the huge amount of work undertaken during the past year and be introduced to the Max Appeal trustees who work tirelessly to help
families affected by 22q11DS.
There are lots of hotels within striking distance of the venue if you are travelling from some distance. It is a very full itinerary and we will be starting promptly at 9.30am. A light lunch will be
provided along with beverages and snacks at intervals during the day.
Please try to book early, especially if you are taking a hotel room, because numbers are limited to just 120 people. The on-line booking system link is below. You
will be asked to choose your preferred workshops at that point too, so please read the itinerary beforehand.
We look forward to seeing you on the 5th December and having a great conference with lots of new information and hearing about the issues you are faced with to help Max Appeal plan its future work."
Booking form on link below.
Max Appeal 2016 Calendars and Wall Planners
Max Appeal 2016 Calendar and Wall Planners - Shout out !!
It's that time of year again !!!
Can we ask for you to send in your photo's of your 22q cuties please.
We need a minimum of 1MB in size please. Lifting off facebook is no good because the resolution is not of printable quality. Email jpegs (or any other type of picture file), but don't embed in a document or an email.
Please state if they have a preferred month. Last year we had about 170 pictures submitted, so we can't guarantee that your picture will be used. We leave it to the graphics people to choose so that it is completely non-preferential.
Please email to info@maxappeal.org.uk
For our newer members: for the last few years Max Appeal has produced a yearly calendar and wall planner using photo's of our wonderful beautiful 22q kids. We send one of each out to all our members free. They look fantastic !!!!
CLOSING DATE : 30th October 2015
Check out Amy Maiorano YouTube Video...Does 22q in the style of Taylor Swift's 22
Amy Maiorano Does 22q in the style of Taylor Swift's 22
Amazing music video by Amy Maiorano doing 22q in the style of Taylor Swift's 22.
Amy's Video
Check out Amy's blog:
www.speakingamy.com/
www.speakingamy.com/
Sarah reports on another Research Project Experience
Research with Maria Rogdaki in London both at Kings College and Imperial College Hammersmith
On Wednesday 16th September 2015 I had the pleasure of meeting with Doctor Maria Rogdaki who came to our house to interview me for a 22q research project. Maria is part of the Psychiatric Imaging Group at Kings College London, and her research project is looking for male and female volunteers aged between 18 and 65 to participate.
They are particularly looking for carriers of the 22q11 deletion syndrome.
The project is studying how natural brain chemicals (that we all have - particularly one called dopamine) function in healthy people, compared with people with brain or mental illness or at high risk for developing mental illness. This is not a treatment trial. Participation in the project will not help directly, but they hope that the research results will help understand the causes of some mental illnesses and so enable the development of treatments.
This is a different study from that being run by the Department of Forensic and Neurodevelopmental Science at Kings College London.
I completed a series of questionnaires, and chatted about how 22q11ds has affected my life.
Maria then explained that the research would require me to go to London for two types of scan – and MRI and a PET scan. Blood and hair samples would also be taken.
A magnetic resonance imaging (MRI) scan is a common procedure used by hospitals around the world. An MRI Scan utilizes a strong magnetic field and radio waves to create detailed images of the organs and tissues within the body.
A positron emission tomography (PET) scan uses radiation, or nuclear medicine imaging, to produce 3-dimensional, colour images of the functional processes within the human body. It shows how the organs and tissues are working within the body. It does involve the injection of a radioactive 'trace' substance into the blood stream. An MRI scan costs about £600, but a PET scan costs £7,000.
Everything is entirely optional - for instance Leah (my daughter) might only take part in the questionnaires, the MRI scan and the hair sampling. We agreed a date when we would go to London for my scans.
On the morning of Thursday 24th September Chris, Leah and I were met at St Pancras by Maria Rogdaki who then took us by taxi to Kings College Hospital. We were then taken out to lunch.
After lunch I had a few more questions to answer and puzzles to do – and then I had my MRI scan which took about an hour. Maria took hair samples from myself and Leah, and then escorted us in a taxi to our hotel in Ealing for the night.
The next morning (after very little breakfast for me) saw another taxi taking us to Hammersmith hospital where the PET scan took place. Although it involved taking tablets, giving a blood sample, having an injection, and then the scan took over an hour, I was not nervous or uncomfortable. In fact, all the staff made me feel at ease. A late lunch in a Chinese restaurant satisfied my hunger.
All expenses were paid, and I earned a fee for my taking part. I was well looked after, and as a result it felt good to contribute to the research.
Morrisons Great Birmingham Run, Sunday 18 October 2015
Fundraising Report
Many of you will be aware that there poor fundraising practices have been in the press in recent times.
The review of fundraising has been published today and we have attached it here.
Max Appeal welcomes this review, and will continue to strive to maintain integrity in all aspects of fundraising.
The main points are that these events have put charities in a very poor light, over 148,000 complaints were received last year about fundraising activities of charities by the Fundraising Standards Board, and that trustees are often disconnected from fundraising which is delegated to members of staff and teams of people.
Trustees are ultimately responsible for the actions of the charity, at Max Appeal our treasurer, Paul Wootton, is the usually the first point of contact for individual donors. The fundraising work is usually shared between him and our Development Officer, Claire Hennessey. Many of our donors are on first name terms with them.
Trustees are ultimately responsible for the actions of the charity, at Max Appeal our treasurer, Paul Wootton, is the usually the first point of contact for individual donors. The fundraising work is usually shared between him and our Development Officer, Claire Hennessey. Many of our donors are on first name terms with them.
The current guidance for charities on fundraising is with the document CC20 of the Charity Commission
Max Appeal has been a member if the Fundraising Standards Board (FRSB) for a number of years and has received no complaints about its practices.
Please see our fundraising pledge:
Claire Hennessey is a member of the Institute of Fundraisers.
The Review recommends that there is a new independent Fundraising Regulator because self-regulation has been proven ineffective and the public has little confidence in such a concept.
This means that the IoF should be merged with the Public Fundraising Association and that its activities are transferred to the new Regulator and that the activities are of the FRSB are replaced by Fundraising Practice Committee and a Complaints Committee, which will make up the new Fundraising Regulator.
We will keep you informed of how these changes are brought in to being, and how Max Appeal responds to the new regulations, recommendations and guidance.
Max Appeal's relationship with our donors, fundraisers and corporate sponsors provides the means for us work to meet the needs of people with 22q11DS.
Again we would take this opportunity to thank all those who have raised money or donated money to Max Appeal.
Simon Lonsdale gruelling half marathon
Simon Lonsdales Middle East gruelling half marathon
One of our members, Simon Lonsdale who helps run the youth camps for Max Appeal, is also is running this gruelling marathon:I am in the Royal Air Force and finishing a 5 month deployment to the Middle East. Before I leave here I have helped organise a Sporting Challenge for the people stationed here and they have agreed that one of the two charities we are supporting is Max Appeal. I am running a half marathon and the temperature will be about 38 degrees C whilst doing this so will not be easy. Please help and support me by donating on this team site, there is the choice between two but I suspect I know the one that you will select. My Just Giving Site is
https://www.justgiving.com/teams/MAB2015-Run-or-Ride. Thank you for any support you can give.
https://www.justgiving.com/teams/MAB2015-Run-or-Ride
Team photo
This is the team who organised the event after the run. Max was at the finishing line to welcome us home. My was was the best time for a half marathon for me knocking 8 minutes off.
Ran in 1hr 52 mins.
Well Done Simon. Thank you for your support.
Jeans for Genes Day today!
Max Appeal is participating in Mediaplanet Uk's 'Genetic Disorders' campaign in The Independent newspaper and online.
See our involvement and find out more on the attached link.
www.healthawareness.co.uk/genetics/what-care-and-support-is-available-for-those-with-deletion-22q11-syndrome
Independent Newspaper 18th Sept 2015
See Max Appeal in the national press gain! The Independent Genetics Disorders supplement carries this publicity advert as part of the jeans for Genes day.
As we know awareness is vital to ensure that people with 22q11DS get the services and help they need.
Great North Run 2015
Great North Run 2015 - Team Max Appeal
Great North Run.. team Max Appeal were mobilised and ready to face the challenge on the 13th September. We had Archie Wootton taking part in the Junior Run (5km)
We had almost 30 runners enter and what a team! They've raised £14.5k already. Can't 'big-up' their efforts enough.
Thank you to all of you.
Names and times will be added asap:
After run treats...
After run party..
Amazing Thanks to all of our Max Appeal Runners:
Finishing Position & TimeSimon Ford 4510 01:46:08
Martin Manchester 6211 01:50:12
Edward Martin 11501 02:00:03
Dave Hill 11536 02:00:06
Richard Parry 11831 02:00:36
Scott Madden 12345 02:01:34
David Jones 13308 02:03:19
Stephen Hogg 16580 02:08:55
Steve Bignell 18325 02:11:51
William Bradley 18339 02:11:52
Jo Cayton 18922 02:12:54
TIM MOLLOY 18923 02:12:54
Fiona Miller 20934 02:16:31
Sara Nasson 21360 02:17:20
Justine Andrew 21361 02:17:20
Linda How 22314 02:19:02
Donna Morton 24537 02:23:19
George Morgan 24601 02:23:26
Michael Harvey-Ascroft 26250 02:26:43
Terri Morgan 28379 02:31:14
Rebecca Georgia Wootton 33671 02:45:23
vik chopra 35900 02:54:04
Lorna Manchester 36913 02:59:16
Linda How & Team
Linda How & Team
Jeans for Genes
Jeans for Genes 18th September 2015
Wear your jeans on Friday 18th September in support of Jeans for Genes Day.
Max Appeal is one of the charities being supported through this year's appeal. Genetic Disorders UK will be funding a parent conference for Max Appeal parents / carers on Saturday 5th December at Cardiff University. Look out of more details about the day in our next newsletter and on our website.
Mention Max Appeal if your local school, work place or community centre is supporting the day.
Look out for the Max Appeal article in the Independent supplement for Genetic Disorders Campaign 2015 on Friday 18th September. '
www.jeansforgenesday.org/getinvolved/
188 Mile Bike ride for Max Appeal
188 Mile Bike ride for Max Appeal
A tremendous thank you to Phillip Hume and Team for their epic bike ride:
WE DID IT!
I am very proud to announce that a team of eight cyclists supported by five crew completed an epic bike ride on Saturday, leaving Knutsford at 6am & arriving 188 miles later in Bath at 7pm.
It was a warm day too with some pretty steep climbs akin to the mountain stages on the Tour De France so this was certainly not an easy course.
Attached are a few photos from the day.
So it's a HUGE congratulations to those who took part & a BIG thanks from those charities for whom you worked so hard for.
Group Photo
Group Photo
Go.....
Go....
Working hard
Working hard
Group photo
Group photo
Max Appeal Family Fun Day on Scarborough Beach
Max Appeal Family fun day, Scarborough Beach
Writes trustee Martin Kennedy:
23rd August was a brilliant day on Scarborough Beach. Great turn out with old and new friends. Enjoyed every minute with the Max Appeal family.
Fun in the sea
Martin enjoying the sun...
Leah and Sarahs 22q11DS Research at Cardiff University
Leah and Sarah's report regarding 22q11DS Research at Cardiff University
In August both Leah and I went to Cardiff University to take part in the research for 22q11 Deletion Syndrome
This was Leahs third participation in taking part in questionnaires and games.
Leah MRI Scanner
The team had previously seen Leah at our home
Sarah was seen at home last year for questionnaires and games
The Research Team have only recently started asking for Adults with 22q to take part
On our visit to Cardiff we both had a MRI Scan and a MEG Scan
MRI stands for Magnetic Resonance Imaging
They just look at the brain
MEG stands for Magnetoencephalography for mapping brain activity
Blood Samples Or Saliva Samples are taken plus hair samples, they also request a skin biopsy under local anaesthetic all these are entirely optional to take part in
We both also had more questions asked and games to do
The Team are amazing, they look after you from start to finish
Because you're taking part in research studies your hotel accommodation and meals and a taxi from hotel to the University are paid for. The team use two buildings in Cardiff
It is a short walk from one to the other building
You do not receive a written report of the studies but if anything is flagged up the Team will contact your GP and you can find out from your GP it takes a few weeks for the Research Team to collate everything together
Just taking part in the Questionnaires and Games at home is important
The participant's who take part will receive at the end Vouchers for taking part, there way of saying Thank You
All information is completely confidential and you can opt out at any time from the studies.
We know we are helping to provide more Awareness of 22qDS by taking part
The Team
The Team
For more information and how to take park please click on the link below.
medicine.cardiff.ac.uk/psychological-medicine-neuroscience/areas-research/copy-number-variant-research/research-projects/
Special Thameslink train raises £9,000 for health charities
'Thameslink Tracker cheque'
'Thameslink Tracker cheque': (from left) Thameslink timetable planner Matthew Dodd, Ashley Westpfel of The Royal Brompton & Harefield Hospital, Rachel Williamson of the Royal Marsden Hospital, Mark Tripp and Claire Hennessey of Max Appeal and Charles Horton, Chief Executive of Govia Thameslink Railway which operates Thameslink trains.
A charity train chartered by Thameslink for rail enthusiasts has raised £9,000 for three very worthwhile causes.
The Royal Marsden Hospital, Royal Brompton & Harefield Hospital and childhood illness support organisation Max Appeal were each given £3,000 at a ceremony organised by Thameslink timetable planner Matthew Dodd, 28, who dreamed up the trip after members of his family were treated at the hospitals.
Matthew, of Knebworth, said: 'The trip was a huge success with 170 paying passengers on board, which has made a lot of money for three very worthwhile causes.'
The 'Thameslink Tracker' trip between Bedford and Blackfriars in a Class 319 train took in among other places Bedford Cauldwell Depot, Bedford Jowett Sidings, Luton Crescent Road and Herne Hill Sidings – which were sought-after spots for rail enthusiasts.
Chris Green, renowned among rail enthusiasts as the man who launched Network SouthEast to unify London suburban rail services, joined the trip and helped raise money by signing brochures for as much as £5 each!
And a raffle, featuring prizes including a VIP ride on Thameslink's train simulator, raised a further £1,000 while the privilege of riding back in the cab was 'sold' for £319 (in honour of the Class 319 train they were in).
Matthew organised the event with the help of the railway enthusiasts' Branch Line Society, Network Rail and other colleagues, including driver manager Andrew Murdin, drivers Martin Barter and Adrian Hewitt and on-board services manager Colin Latimer.
The rationale for choosing the three charities was that The Royal Marsden is on Thameslink's Wimbledon/Sutton rail route and treated Matthew's father-in-law for cancer; Matthew's brother has had two open heart operations at Harefield Hospital; and Max Appeal helps children with the genetic condition '22QDS', such as nine-year-old Adam Tripp, son of Great Northern driver Mark Tripp.
The Royal Marsden Hospital, Royal Brompton & Harefield Hospital and childhood illness support organisation Max Appeal were each given £3,000 at a ceremony organised by Thameslink timetable planner Matthew Dodd, 28, who dreamed up the trip after members of his family were treated at the hospitals.
Matthew, of Knebworth, said: 'The trip was a huge success with 170 paying passengers on board, which has made a lot of money for three very worthwhile causes.'
The 'Thameslink Tracker' trip between Bedford and Blackfriars in a Class 319 train took in among other places Bedford Cauldwell Depot, Bedford Jowett Sidings, Luton Crescent Road and Herne Hill Sidings – which were sought-after spots for rail enthusiasts.
Chris Green, renowned among rail enthusiasts as the man who launched Network SouthEast to unify London suburban rail services, joined the trip and helped raise money by signing brochures for as much as £5 each!
And a raffle, featuring prizes including a VIP ride on Thameslink's train simulator, raised a further £1,000 while the privilege of riding back in the cab was 'sold' for £319 (in honour of the Class 319 train they were in).
Matthew organised the event with the help of the railway enthusiasts' Branch Line Society, Network Rail and other colleagues, including driver manager Andrew Murdin, drivers Martin Barter and Adrian Hewitt and on-board services manager Colin Latimer.
The rationale for choosing the three charities was that The Royal Marsden is on Thameslink's Wimbledon/Sutton rail route and treated Matthew's father-in-law for cancer; Matthew's brother has had two open heart operations at Harefield Hospital; and Max Appeal helps children with the genetic condition '22QDS', such as nine-year-old Adam Tripp, son of Great Northern driver Mark Tripp.
'Thameslink Tracker': Thameslink timetable planner Matthew Dodd (far right) and the team, including Chris Green (second from left) who helped run a rail enthusiasts' train trip that raised £9,000 for charity
Mary's trip to Japan (& Maxi Bear went too)
Mary Lonsdale's Trip to Japan
On the 24th July 2015 I left Bristol to go on a journey of a lifetime. On the 23rd my mum dropped me off at Woodhouse Park in Bristol with my Unit in which I would be spending 2 and a half weeks with them in Japan. After 2 years of planning it had finally arrived.
We had to wake up at 1:30 to catch a bus at 2:00 to travel down to Heathrow Terminal 2 airport. Are flight was at 9:15am but we arrived there at 4:30am
We had a 2 hour flight to Vienna and then a 10 and a half hour flight to Narita Airport. We landed in Japan at 6:30 and it was hot!!
We then had a two hour air conditioned coach journey to Tokyo Youth Hostel. We wernt aloud in our rooms as they weren't ready so we went out and explored Tokyo.
It was a 10 minute walk to the train station. It took us a while to work out the stations but we worked it out.
We went to visit the earthquake centre and before that we stopped at a little Japanese restaurant and I tried octopus!!!
On the second day we visited the meiji shrine, Takishita Street and the Tech District. They were all amazing to see. In the evening we went to Joypolis (The big indoor amusement park.
The next day we got up early and visited the fish market!! Then we went to the Sky tree. In the evening we went to a party called Tokyo Live.
Then the next morning we left Tokyo for a 4 hour bullet train ride to Yamaguchi. We had a reserved train for us with 1,400 UK scouts on it
The next day we got up early and visited the fish market!! Then we went to the Sky tree. In the evening we went to a party called Tokyo Live.
Then the next morning we left Tokyo for a 4 hour bullet train ride to Yamaguchi. We had a reserved train for us with 1,400 UK scouts on it
We arrived at the Jamboree site and made out way to our camp which was a fifteen minute walk from the main gate. We set up camp and then headed over to the opening ceremony. We were on site for 10 days.
We had a few days were we visited other places like a nature park, a school and Hiroshima. We visited Hiroshima the day before the 70th anniversary.
On the last day we set down our camp and waited for the closing ceremony. After the ceremony we were on a coach journey for 6 hours to Hamamatsu.
We stayed with a Japanese family for a day and for me that was the best part of the Jamboree.
We left Hamamatsu at 2:30 in the morning for a long coach journey to Narita Airport. Our flight was at 11:15am. We arrived in Vienna at 4:30 and stayed there for 4 hours. Our flight was 25 minutes delayed which meant we were an hour late when we arrived in Heathrow.
Overall Japan is an experience I will never forget. I made many friends on the 2 year journey and I'm glad to have made friends I will never forget.
I want to thank Max Appeal again for donating some money to me right at the beginning of the two years to help me on the journey I will never forget!!!
By Mary Lonsdale
I want to thank Max Appeal again for donating some money to me right at the beginning of the two years to help me on the journey I will never forget!!!
By Mary Lonsdale
Max Appeal Christmas Card Competition 2015
New Christmas Card Designs for Max Appeal
Well you probably don't want to be reminded, but it's only 19 weeks to Christmas!
We would like to offer some new Christmas Card designs for the coming festive season.
Can you help?
.... if you would like to enter a festive design which could be chosen as part of the Max Appeal 2016 Christmas Card series please produce your design on an A4 sheet of paper and put your name, competition group and contact details on the back of the picture. Please send to Freepost Max Appeal. Closing date for entries has been extended to 15th November 2015.
The competition groups are;
Group A - Up to 11 years
Group B - 12 -17 years
Group C - 18 years and over
The competition groups are;
Group A - Up to 11 years
Group B - 12 -17 years
Group C - 18 years and over
Shuttleworth Air Museum Max Appeal Family Day out - 11th August 2015
11th August 2015 Shuttleworth Air Museum
The Shuttleworth meet was a huge success and enjoyed by all who came, the day started at 10:30 with the kids enjoying the outdoor play area and getting some of their energy out of their systems. Well at least that was the plan but after a leisurely picnic sat watching the airplanes and helicopters come and go the kids showed their endless energy by visiting the museum and walking around the Swiss Gardens.
I'm pleased to say that Max Appeal appears to have found a little gem in the Bedfordshire countryside.
Aaron Cooks' first snooker tournament of the season
Aaron Cooks' first snooker tournament of new season. It was pro am at South West Snooker Academy.
Aaron has been practicing hard had a 72 break today. Aaron is playing in at least 50 competitions this season travelling all over the UK and even going to germany to play.
We will keep you all updated to how he does and he's proud to show off the max appeal logo every time he plays
Cheers for all your support he deserves a good season after all his effort in practice.
Temple Newsman House, Leeds, Family Day Out - 28th June 2015
Temple Newsam House
A damp and windy Yorkshire morning followed by a sunny afternoon met the five families who came to the Temple Newsam House (Leeds) family get together on June 28th. It was lovely meeting up with everyone with a new family joining us. The weather wasn't too kind in the morning but it came out nice in the afternoon where we took a short walk around the grounds and had a nice bun and coffee in the courtyard café. We shall arrange it for a similar time next year and hopefully the weather will be a bit kinder!
Shuttleworth Air Museum, Tuesday 11 August 2015
Mark and Kelly Tripp would like to invite you all to a day at Shuttleworth Air Museum on Tuesday 11th August, it is situated approximately 2 mins from Biggleswade junction of thee A1m in Bedfordshire.
Brighton Beach Family Meetup, Saturday 29 August 2015
10k London Run - Vitality West Run London, Sunday 04 October 2015
Vote for Max Appeal - Just Giving Charity of the Year.
Vote for Max Appeal - Just Giving Charity of the Year 2015
Why not help Max Appeal by nominating them for charity of the year with Just giving.
The JustGiving Awards return to the UK this September and the hunt has begun to find our next Charity of the Year AND the Most Popular Charity Campaign – a new category for 2015.
The winner and two runners up for each award category will be announced at our JustGiving Awards ceremony on Wednesday 23rd September 2015. Plus, we've got £1,000 donations up for grabs for the winners and £500 donations for the runners up!
We've got until Sunday 23rd August 2015 to cast as many votes as you can.
visit http://just.ly/charity-award to cast your vote!
Please feel free to share and ask your friends and family to vote too.
just.ly/charity-award
Newscatle University, Australia
Max Appeal Train - First Year Anniversary
The 25th July saw the first anniversary of our Max Appeal train... who could believe a whole year has elapsed since we named her after Max Appeal.
Let's hope her journeys in and out of London have made alot more people aware of 22q11 DS.
Please use your opportunities to raise awareness of 22q11 DS.
Tunnel 2 Towers Race
Great effort on Sunday 2nd August 2015 by everyone involved and fantastic fundraising of £1,000 for Max Appeal.
Hannah's full story of the event is on our fundraising pages.
NEW STUDY with GOS
Calling parents and carers of children and youjng people aged 11- 25 years
We would ask you to participate in the on-line forum to inform us about your experiences as a parent/carer of a person with 22q11DS about access to services and mental health issues.
Please click on the link below to find out more information.
Adult Management Guidelines
Max Appeal Youth Weekend - round up!
Max Appeal Youth Weekend, Cranham Scout Camp. 23rd- 26th May, 2015
Our youth weekend at Cranham Scout Camp in Gloucestershire is becoming a bit of a Max Appeal tradition. We were however missing one key ingredient this year (on 23rd to 26th May), our camp leader Simon Lonsdale, as he was whisked away on other important duties at short notice. However Caroline Lonsdale, Guy Wyatt, Helen and Chris Meldrum, Martin Kennedy and Claire Hennessey stepped in to ensure a good time was had by all.
As well as the usual climbing, archery, shooting, cooking, arts and crafts, walking, challenge course and wood and bush craft activities we tried as taste of yoga and a visit to Gloucester Tall Ships Festival. All this plus the evening quiz, camp fire and generally catching up for children, young people and parents.
Special thanks also to Mary Lonsdale in helping to keep the kitchen running smoothly and supplying plenty of food, Sarah Ryan for her help and all her wonderful cakes and all the parents who came along and helped out and generally ensured the camp was another successful Max Appeal Activity.
Look out for the dates for Youth Camp 2016.
If you would like further information about Youth Camp please contact claire@maxappeal.org.uk
Special thanks also to Mary Lonsdale in helping to keep the kitchen running smoothly and supplying plenty of food, Sarah Ryan for her help and all her wonderful cakes and all the parents who came along and helped out and generally ensured the camp was another successful Max Appeal Activity.
Look out for the dates for Youth Camp 2016.
If you would like further information about Youth Camp please contact claire@maxappeal.org.uk
Lee & Mark Mitchell's Miles Fundraisers for Max Appeal
Lee & Mark Mitchell's story so far....
We are now currently 4 events into our Fundraising Challenge for Max Appeal with 2 left to go. At the beginning of 2015 we set ourselves 2 goals one was to complete 6 unique challenges and the other was to raise awareness for 22Q11DS and a minimum of £5000. As of right now we are on track to successfully complete the goals.
Still smiling...
So far we have ran in 3 ultra marathon events, which is over 45 hours of running covering 189 miles, we have cycled from Weston Super Mare to Beachy Head, off road, across the South Downs, over 220 miles. It is amazing what you can put yourself through and what militias you can push your body to and it will still keep on going. I carry a picture of my family with me so that when it's cold, dark and raining in the early hours of the morning and I am struggling to walk never mind about run, I get it out and remind myself as to why I am doing this. In 2-3 days time my body will recover but for my daughter and many others like her they fight daily for many things we take for granted and that is why I can do these things, it's nothing to what some people go through and yet they continue to smile through it all and carry on.
We have 2 events left to go one at the end of August and one the beginning of September both are 62 miles long ultra marathons.
If you would like to donate to this wonderful fundraiser, please see link below...
Fundraising and raising awareness is also on target, we have almost hit the £3000 mark with donations and support from people all over the world, we have organised bake sales, a raffle and a medieval night as well as friends doing challenges themselves for Max Appeal and supporting us, our Church St Botolphs at Quarrington and Sleaford Town Football club have all been involved in supporting the appeal. The local Gym, Fitness Zone is organising a pamper day, we have a Race Night and a few other things coming up to help us hit the magic £5000 and above.
Newspapers, radio stations have all been involved in raising awareness of 22Q11DS and I speak about it at every chance I get at all the events and on my travels.
When all this is completed the next hardest thing will be deciding what we are going to do to beat these challenges to continue to raise funds and awareness for Max Appeal, suggestions are welcomed.
Lee Mitchell
https://www.justgiving.com/MitchellsMiles
What is the prevalence of 22q deletion in the population?
Pre-natal Diagnosis of 22q11.2 Deletion and Duplication syndromes
A new study published in June 2015 in the scientific Journal "Prenatal Diagnosis" based on over 9500 prenatal testing samples suggests that the previously stated prevalences of 22q11.2 deletion and duplication syndromes are hugely under-estimated!
The new information results from studies using chorionic villous Sampling (CVS) and amniotic fluid (AF) samples which were analysed by highly technical methods in in a number of laboratories throughout the world but the paper is published by a group of Italian scientists.
The result was a prevalence rate for the microdeletion of 1/992 and for the microduplication of 1/850 and makes 22q more prevalent than Down syndrome (the UK Down Syndrome Society quotes 1 in 1,000 births).
Do read the abstract via the link below... (Julie says that it's all a bit too complicated for her but she did understand the numbers!)
Link to the abstract of the scientific paper
Do read the abstract via the link below... (Julie says that it's all a bit too complicated for her but she did understand the numbers!)
Link to the abstract of the scientific paper
Stourport Max Appeal Members Picnic in the park, Sunday 12 July 2015
Max Appeal members and friends. Meetup at 11am. Picnic in the Park. Stourport on Seven. Further details to follow.
National Congenital Heart Disease Audit - Patient and Family survey
We have been asked to help gather information for this project:
Congenital Heart Disease (CHD) affects around 1 in every 100 children born around the world, one third of whom require an intervention during infancy.
50 years ago, hardly any of the children requiring an intervention would have survived.
Sadly, in many developing countries, this is still the case.
In contrast, in the UK and most other countries in Europe and North America, advances in diagnosis, treatment and surgery mean that the percentage survival rate for such children is currently in the high nineties, and rising.
Over 10,000 CHD procedures are performed in the UK and Ireland each year on children and adults in over 30 centres, with children under 16 years of age treated exclusively in 14 of these units.
The National Congenital Heart Disease Audit (NCHDA), which is part of NICOR, collects, analyses and publishes data on the diagnosis and treatment of CHD in UK and Ireland. This is available to clinicians, to regulators, to patients and their families, and to the general public via the NICOR NCHDA website.
Because the amount of information available on the NCHDA website is so enormous, it is really important that it is presented in an easily accessible and understandable way.
This is where the NCHDA Steering Committee at NICOR is looking for YOUR help and advice.
We would really like you to take a look at the data presented on the NCHDA website and then fill in a short online survey to help us understand what changes need to be made to make it as user-friendly as possible.
• FIRST - please click on the link below to visit the NICOR website or copy and paste the link into your internet browser
If you haven't done so before, have a look around the data and see which bits would be most interesting or important to you as a user of the service.
Go to the NICOR Web site
Sadly, in many developing countries, this is still the case.
In contrast, in the UK and most other countries in Europe and North America, advances in diagnosis, treatment and surgery mean that the percentage survival rate for such children is currently in the high nineties, and rising.
Over 10,000 CHD procedures are performed in the UK and Ireland each year on children and adults in over 30 centres, with children under 16 years of age treated exclusively in 14 of these units.
The National Congenital Heart Disease Audit (NCHDA), which is part of NICOR, collects, analyses and publishes data on the diagnosis and treatment of CHD in UK and Ireland. This is available to clinicians, to regulators, to patients and their families, and to the general public via the NICOR NCHDA website.
Because the amount of information available on the NCHDA website is so enormous, it is really important that it is presented in an easily accessible and understandable way.
This is where the NCHDA Steering Committee at NICOR is looking for YOUR help and advice.
We would really like you to take a look at the data presented on the NCHDA website and then fill in a short online survey to help us understand what changes need to be made to make it as user-friendly as possible.
• FIRST - please click on the link below to visit the NICOR website or copy and paste the link into your internet browser
If you haven't done so before, have a look around the data and see which bits would be most interesting or important to you as a user of the service.
Go to the NICOR Web site
• THEN - please click on the link below or copy and paste the link into your internet browser and complete the online survey by 27th July at the latest.
Go to the on-line survey
Following this survey, it is planned to hold a consultation workshop in London in the Autumn. More details will follow later.
We really appreciate your help.
Thank you very much indeed!
22k for 22q Dublin, Sunday 2nd August 2015
Join Team 22k for 22q Dublin - An amazing international group of runners, walkers, and volunteers raising awareness for 22q11.2 deletion and duplication syndromes by participating in the Dublin Rock-n-Roll Half Marathon 22k or Fun Run 3k on August 2, 2016 on the beautiful Emerald Isle! This collaborative venture is supported by 22q Ireland, the 22q11.2 Society, Max Appeal, and the International 22q11.2 Foundation, Inc..
Go to International 22q Foundation web site to book your place
Registration package includes entrance fee for either the Half Marathon or the Fun Run and a "one of a kind" Team 22k for 22q Dublin New Balance Wick Shirt to be distributed at our Pre-Race Charity Tent.
Additional very cool shirts are also available for additional purchase. These too will be delivered in Dublin for only $20shirt or $25shirt if shipped to the continental United States of America or $20shirt plus international shipping if delivered outside of the continental United States.
If you would like to join our team, please hurry, as registration and wick shirt orders close at midnight DST on July 10, 2015. Hoping to see you in Dublin!
Additional very cool shirts are also available for additional purchase. These too will be delivered in Dublin for only $20shirt or $25shirt if shipped to the continental United States of America or $20shirt plus international shipping if delivered outside of the continental United States.
If you would like to join our team, please hurry, as registration and wick shirt orders close at midnight DST on July 10, 2015. Hoping to see you in Dublin!
Coast to Coast, Thursday 18th June 2015
Record fundraising totals from tRAILblazers benefits Max Appeal
_large.jpg)
tRAILblazers topped their fundraising record on this year's sponsored walk along the line once used by the Atlantic Coast Express.
Big Max Appeal Thank you to Matthew Dodd.... Some brilliant fundraising...
Matt ran the London Marathon 2015. In 3:15:23
He says "In terms of the marathon itself, it was an incredible experience and something which I'll never forget. The support throughout the entire route (some places were five or six people deep) was amazing and after 22 miles, this was the only thing that kept me going. It was great to have so many friends and family along the course and also to celebrate with afterwards. All in all, it was a really enjoyable day and I would definitely recommend the London Marathon to anybody considering a challenge for charity."
Matt also has been raising funds by growing his hair for 5 months, going teetotal for two and a half months, a comedy evening and a tennis tournament that included a BBQ, cake sale and raffle.
and raised an absolutely huge amazing £4054.05
News release: 13 May 2015
Over 100 people from families with children with complex medical conditions take part in '22Q at the Zoo' Sunday 17 May 2015: 10.30am at Shepreth Wildlife Park
News release: 13 May 2015
Over 100 people from families with children with
complex medical conditions take part in '22Q at the Zoo'
Sunday 17 May 2015: 10.30am at Shepreth Wildlife Park
This Sunday 17 May 2015 over 100 people from families with children with complex medical conditions will be treated to special day out at Shepreth Wildlife Park. The event '22Q At The Zoo' is staged at zoos across the country by Max Appeal – the charity that supports children and their families with 22q11 Deletion Syndrome (DS) – a complex condition that is often undiagnosed and leads to lifelong struggles for those affected.
Great Northern have sponsored the event for Max Appeal with free rail travel and entry for the wildlife park. Great Northern's Passenger Service Director Keith Jipps said: 'One of our train drivers' nine-year-old sons has this genetic condition so we were delighted to sponsor this family event Sunday 17 May.'
Mark, Keith Jipps & Adam
Train driver Mark Tripp, whose son Adam has the condition (pictured with Adam and Keith Jipps), said: 'When Adam was first diagnosed we went to a 22Q At The Zoo and it really helped us as a family. We were quite numb at the time but here were 150 people all there for the same reason and our children could meet and play with one another. We were able to find somewhere quiet at lunchtime where we could get together and learn from other people's experiences.'
In preparation for the event, over 35 skilled contractors from Great Northern gave their time for free in a recent 'Ground Force' style makeover by:
o repainting around 1km of fences and replacing sections of public barriers around the big cats
o dredging out Monkey Island Lake
o repainted 'Meerkat Manor'
o painted enclosures in the Native Species Woodland and on Marmoset Island
The workforce was able to achieve in one day what the park would have been able to accomplish in six weeks.
Julie Wootton (pictured bottom row left), CEO, Max Appeal, said: 'This is such a special day out for our families. '22Q at the Zoo' takes place in countries around the world and provides an important opportunity for people to get together and offer support. It is also of particular benefit to the children with 22Q DS. Children with autism, which is a typical symptom of the condition, respond well to animals which have a calming influence. We couldn't do this without the kind support of Great Northern and Shepreth Wildlife Park and are very grateful for their support.'
Further information:
These pictures and others from the preparation day are available via this link: https://drive.google.com/folderview?id=0B37S24j3JgC7fnZkZUpCN1hzVkRHRUZhV1hxWHBZaFJETEExYkh5azNJNGwyWkhxaFdIQnM&usp=sharing
Max Appeal: For case studies and interviews please contact Emma Pelling:07958 558172 emma@pellingpr.co.uk www.maxappeal.org.uk #22QattheZOO
Great Northern: Katherine Cox, press officer at Great Northern rail 07885 978 014 katherine.cox@gtrailway.com
On the day: Roger Perkins, head of communications at Great Northern rail 07711 149 245 roger.perkins@gtrailway.com.
Interviews available:
o Great Northern train driver Mark Tripp, his wife Kelly and their nine-year-old son, Adam, who has 22QDS.
o Julie and Paul Wootton, who lost their son to 22QDS and set up charity 'Max Appeal' in his memory.
o Rebecca Willers, director of Shepreth Wildlife Park
Reporters' opportunities:
o Animal handling (baby meerkats, snakes!)
Editor's notes
Shepreth Wildlife Park
Shepreth Wildlife Park is a family-run business in the small village of Shepreth, close to Cambridge. It has a wide variety of animals and offers keeper experiences with tigers and lemurs among others.
Max Appeal
Max Appeal was founded by parents of children diagnosed with DiGeorge Syndrome (DS), which results from a missing gene (22q11), a complex condition that is often undiagnosed and leads to lifelong struggles for those affected.
Great Northern
Govia Thameslink Railway (GTR) began running Thameslink (Bedford to Brighton, Sutton and Wimbledon) and Great Northern (London to Peterborough, Cambridge and King's Lynn) rail services on 14 September 2014. A small number of services and stations previously operated by Southeastern transferred to GTR in December 2014 and in July 2015 the Southern and Gatwick Express routes will be incorporated into the franchise. GTR will then be the largest rail franchise in the UK in terms of passenger numbers, trains, revenue and staff: GTR will carry about 273 million passenger journeys per year, employ around 6,500 people and generate annual passenger revenues of approximately £1.3bn. www.gtrailway.com www.thameslinkrailway.com
Wollaston Tennis Club Family Fun Day, Saturday 11 July 2015
Wollaston Tennis Club Stourbridge, West Midlands
Invites you to a family fun Saturday 11th July 2015 from 2pm
Come and join us for a free afternoon of fun and tennis
Featuring the Great Wollaston Bake off
BBQ - Music - Bar - Ice cream
Bouncy castle - Fastest Serve Competition
8 floodlit courts - function room
Many great donated raffle prizes. All in aid of Max Appeal
Wollaston Tennis Club web site
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.
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.
Have a Brew Cake Toppers
"Have a Brew" Max Appeal Cake toppers now available to buy. 25% of each sale goes directly to Max Appeal.
www.mycupcaketoppers.co.uk/collections/max-appeal
The Tunnel to Towers run/walk, Sunday 19th July 2015
Have you ever wanted to contribute a little back to Max Appeal to help fund next years Zoo day or Camp etc etc, well here's your chance plus another meet up opportunity.
Below is a link to the tunnel to towers runwalk on Sunday 19th July.
The charity is set up by firemen to help pay towards those injured in the line of duty, it is a legacy from the sad events of 9-11.
The tunnel to towers run is a 5km event approx 3 miles and can be run or walked, wheelchair users are welcomed as well, the route starts at South Park Bermondsey, goes through the Rotherhide Tunnel, past Billingsgate Market and finishes near Canary Wharf for an post runwalk party.
Mark Tripps' good friend Vince is on the organising committee and he has asked if Max Appeal would like to put a team together, there will be an entry fee of between £12 - £20 depending on numbers which will go to the charity, we are then free to get sponsorship for Max Appeal.
We have been promised some space for Banners etc at the finish line and we will be invited to the street party afterwards. It's another opportunity to spread the word about 22q as well as supporting two great causes.
As this is a walk or run event I thought it might be nice to get some families etc together and enter as a group.
Ladies please note their will be real firemen in uniform competing and lining the route so this may interest you.
If anyone is interested please email info@maxappeal.org.uk
Click to go to the run web site
The tunnel to towers run is a 5km event approx 3 miles and can be run or walked, wheelchair users are welcomed as well, the route starts at South Park Bermondsey, goes through the Rotherhide Tunnel, past Billingsgate Market and finishes near Canary Wharf for an post runwalk party.
Mark Tripps' good friend Vince is on the organising committee and he has asked if Max Appeal would like to put a team together, there will be an entry fee of between £12 - £20 depending on numbers which will go to the charity, we are then free to get sponsorship for Max Appeal.
We have been promised some space for Banners etc at the finish line and we will be invited to the street party afterwards. It's another opportunity to spread the word about 22q as well as supporting two great causes.
As this is a walk or run event I thought it might be nice to get some families etc together and enter as a group.
Ladies please note their will be real firemen in uniform competing and lining the route so this may interest you.
If anyone is interested please email info@maxappeal.org.uk
Click to go to the run web site
The Thameslink Tracker, Sunday 12 July 2015
Branch Line Society
For details of the Branch Line Society's special rail tour, go to the link below.
Max Appeal is one of the nominated charities being supported.
Go to the event web site
Family Day at Temple Newsam house Leeds., Sunday 28 June 2015
Max Appeal Family Day At Templenewsam House Leeds.
28th June 10.30am
This is being organised by Martin Kennedy who is a Trustee of Max Appeal.
An informal meet up at Templenewsam House in Leeds. Templenewsam is a lovely place with lots of space for the kids to run round and a big outdoor adventure park area. I thought we could meet up from 10.30 onwards pitch our chairs round and have a good natter over a picnic lunch. The good thing is the place is free to park, there is loads of room, there is a cafe and shop etc. There is also a farm to go round but I understand this costs around £6.00 to get in. All welcome!
Please email info@maxappeal.org.uk if you have any queries.
www.leeds.gov.uk/museumsandgalleries/Pages/Temple-Newsam.aspx
22q@thezoo 2015
A tremendous thank-you to all who have made this year's 22q@thezoo so successful.
Organisers, venues, 22q11DS families and corporate sponsor Great Northern Rail.
Great day at locations around the Uk and worldwide.
Ask us about 22q11DS!
Thank you to all of our Max Appeal Fundraisers...
Thank you to all of our Max Appeal Fundraisers
Don't forget to check out our fantastic Max Appeal Fundraisers...
We thank you all so much for what you do for Max Appeal.
Education and Healthcare Experiences questionnaire
Strathclyde University wants to know a few things... they say:
We are trying to find out about the educational and healthcare experiences of people diagnosed with 22q deletion syndrome.
Are you an individual with 22q deletion syndrome and over the age of 16?
Or are you a parent or carer of a person who has 22q deletion syndrome and is any age?
If so, we would like you to complete a survey.
Not much is known about the educational and healthcare support needed for individuals with 22q deletion syndrome, or whether it is available. We are a group of researchers interested in finding out more about the educational and healthcare experiences of individuals who have been diagnosed with 22q deletion syndrome and are living in the United Kingdom. We are particularly interested in finding out individuals' and/or parents'/guardians' views on education and additional support for learning at school, and their experiences of medical services in both hospital and community settings.
We have designed an anonymous electronic survey. If you are interested in finding out more please follow this link:
Go to the survey
We have designed an anonymous electronic survey. If you are interested in finding out more please follow this link:
Go to the survey
If you have any questions about this project please contact:
Chief Investigator:
Wendy Cohen, Speech and Language Therapist, University of Strathclyde on 0141 548 3793 or wendy.cohen@strath.ac.uk
Co-Investigators:
Elspeth McCartney, Speech and Language Therapist, University of Strathclyde on 0141 548 3058 or e.mccartney@strath.ac.uk
Lisa Crampin, Speech and Language Therapist, Glasgow Dental Hospital on 0141 211 9676 or Lisa.Crampin@ggc.scot.nhs.uk
Chief Investigator:
Wendy Cohen, Speech and Language Therapist, University of Strathclyde on 0141 548 3793 or wendy.cohen@strath.ac.uk
Co-Investigators:
Elspeth McCartney, Speech and Language Therapist, University of Strathclyde on 0141 548 3058 or e.mccartney@strath.ac.uk
Lisa Crampin, Speech and Language Therapist, Glasgow Dental Hospital on 0141 211 9676 or Lisa.Crampin@ggc.scot.nhs.uk
Great Northern contractors prepare Shepreth Wildlife Park for 22q at the Zoo
This Friday 8 May saw 'Ground Force'-style renovations at family-run wildlife park – Shepreth Wildlife Park.
The 35 strong team prepared the park for 115 people coming to 22Q at the Zoo on Sunday 17th May 2015. The day has been kindly sponsored by Great Northern.
Skilled contractors from railway company Great Northern gave time for free by:
* repainting around 1km of fences and replacing sections of public barriers around the big cats
* dredging out Monkey Island Lake
* putting up new fences to reopen the wallaby walk-through
* repainting the aviary
* painting dens for wallabies, ostriches and capybara
Great Northern train driver Mark Tripp, his wife Kelly and their eight-year-old son, Adam, who has 22Q 11 DS (pictured left) and Julie and Paul Wootton, from Max Appeal were also working at the preparation event alongside; Rebecca Willers, director of Shepreth Wildlife Park and Keith Jipps, passenger service director of Great Northern trains.
News Release
For further press details please view the attached news release.Big day approaching for Max Appeal runners
It's race day on Sunday 26th April for the 2015 Virgin Money London Marathon. Good luck to all our runners! We hope they all enjoy the occasion and get round the course safely. Their fundraising will make a big difference to Max Appeal, please support them.
If you would like to run in the 2016 race then do get in touch and let us know.
https://www.justgiving.com/maxappeal/donate/
Special Offer for TrekFest
The Beacons TrekFest is on the verge of selling out now!
To get this special offer don't delay and register for this popular event.
Gobal Adventure Challenge have notified us of this special
discount code for the last remaining places.
Just use FB10 when booking your place. This will give you £10 off the registration fee.
The Peak District TrekFest in September is another option and now is a good time to register your interest and reserve your place.
Use the special link below;
There are three distance options of 13, 29, 54.
https://regonline.activeeurope.com/Register/Checkin.aspx?EventID=1632868
If you would like to find out about other options for treks in both the Uk and abroad please contact Claire@maxappeal.org.uk
There are plenty of options available!
There are plenty of options available!
Summer Outing Scarborough Beach, Sunday 23rd August 2015
Enjoy a day at the beach with other Max Appeal families. Beach day is becoming an annual tradition so if you haven't tried it then please join us this year for an informal fun day.
Further details nearer the time, on where to meet and times.
Martin Kennedy will be organising the event, so please let him know if you are aiming to come along or you need further details.His email is; martinkennedy@talktalk.net
Blooming Marvellous
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.
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.
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.
We have lots of goodies to make your day a success.
We can supply you with a free "Have a Brew" pack.
It will include; 6 balloons, 6 cake toppers, A3 poster, bunting and money box.
To request a pack and register your event contact: steph@maxappeal.org.uk
Please supply name and contact/address
details.
Posters and bunting can be downloaded from our website and printed if you need any extras.
More items to make your "Have a Brew for 22Q!" a special event will be available to order soon.
22Q at the Zoo Sunday 17th May 2015 Shepreth Update....
22q at the Zoo 18th May 2014 - Shepreth - News Update....
Shepreth update.. Don't miss out....
The following will all be on offer.
We havefunding from the Department for transport to purchase train tickets. This will cover around 50 people's travel by train on the Govia Thameslink Railway - if you are in the London or Kings Lynn area etc then this will definitely benefit you.
Also Everybody who books for Shepreth will receive a free '22Q at the Zoo t-shirt. (Donations to Max Appeal for them will be gratefully received but entirely optional)
Shepreth Wildlife park will be hosting two special 'meet the animal' sessions. ( one morning and one afternoon )
Sarah Ryan and Leah Ryan will once again be hosting and hopefully Christopher Ryan will be well enough to join us as well.
Booking form below...
Max Appeal Youth Camp, Saturday 23 May 2015
Max Appeal Youth Activity Weekend at Cranham Scout Centre.
An opportunity for children affected by 22q11 DS to get together and have fun using the outdoors. Lots of activities and new things try out. Great for confidence building.
Booking forms will be available online w/c 7/3/15.
For further details please see the poster below. Any enquiries to claire@maxappeal.org.uk
Brighton Fun Run, Saturday 25th July 2015
Please see attached if you fancy joining in.
One of our members Vicki Faires is running to raise funds for Max Appeal.
Col Me Rad 5km, Saturday 16 May 2015
A fun run with a difference...sign up for a fun time and raise funds for Max Appeal.
A series of runs and dates around the country over May and June.
Check out the website and find one near you and take part.
We already have one supporter signed up!
Good luck Lindsay!
www.colormerad.co.uk/
The Zoo Bewdley - Donations for Computers
The Owner of a Computer repair shop is helping out Max Appeal by offering refurbished PC equipment in return for customers willing to make a donation to Max Appeal.
Steve Gould the 57 year old owner of The Zoo in Bewdley, was contacted by someone who knew that M D Events Group had donated computers to Max Appeal to enable the charity to raise vital funds.
The Zoo is now reconditioning the computers and has put together 6 fully working systems and will offer them for free to whoever will give a sizeable donation to Max Appeal. The systems would normally go for £150 but would like to think that people will be willing to give at least £60-£70 to Max Appeal.
Nifty Fifty Endurance, Saturday 16 May 2015
Endurance Race 16th May 2015
Dave Conroy and team all Set to raise funds for Max Appeal, teams consisting of four riders are set to compete in a 5hr Endurance Race on mopeds and scooters of with engines of up to 90cc's
They will try to complete as many laps as they can on a specially prepared off-road circuit on the outskirts of Winchester in Hampshire.
Each team has selected a charity of their own choice and will be aiming to collect sponsorship and donations for each lap of the circuit that they complete during the 5hr race. They will have to navigate small jumps and climbs and try to overcome all adversities during the event and endeavour to keep their little machines going right to the end.
The machines being used once started life as road machines and have been adapted for this event by way of minor modifications such as off-road pattern tyres and the removal of lights and mirrors. This ensures that each team can compete against each other fairly and that the cost of competing is kept to a minimum.
Small prizes will be offered for the teams completing the most laps and a special trophy will be awarded to the team which kept going in the face of all adversities and kept their spirit to the end.
Please feel free to show your support by cheering Dave on at
Route 34 Motocross Park (was Tonymoto MX Park),
Down Farm Lane, Winchester, Hants. SO22 6RG
Dave has has also set up a just giving page...
https://www.justgiving.com/david-conroy
Media Release Cardiff University Study 22q11 DS
Press Release Post APPG Event, Friday 13 March 2015
Press Information for 22q11 Syndrome APPG Event.
'I set up this APPG to raise awareness about this syndrome now that it can be tested for. The detection rate is currently very low which means people may not be getting the help they need. I am pleased that so many of my colleagues have joined this APPG.' Jack Lopresti MP.
'Increasing awareness of the benefits of applying the new DNA technology was probably the most important message given by parents and clinicians to the APPG. As pressure on the Community services increase it becomes ever more important to have the ear and understanding of our elected representatives on the needs of 22q families. For that we owe a great debt to Jack Lopresti MP and his colleagues to give Max Appeal the opportunity to keep Members informed of progress in the 22q awareness initiative the APPG has backed.'
Alex Habel, Honorary Consultant Great Ormond Street Hospital
22q11 Syndrome All Party Parliamentary Grp Launch, Tuesday 10 March 2015
22Q at the Zoo Sunday 17th May 2015, Sunday 17 May 2015
Cardiff University Looking for 22q Adults
Samuel Chawner writes:
Cardiff University's ECHO study has been learning about the experiences children with 22q11.2 deletion and duplication syndromes for the past five years. In addition to child volunteers, we are now also looking for adults with the 22q11.2 deletion or duplication to take part.
This will improve our understanding of experiences across the lifespan. Please click on the link and visit our website for more information, or contact Ffion (adult study; Tel: 02920688242, email: evansf4@cardiff.ac.uk) or Aimee (child study; Tel: 02920688358, daviesar5@cardiff.ac.uk) if you are interested in taking part.
ECHO web site
ECHO web site
Snakes and Slides 22q Meetup 22nd Feb, Sunday 22 February 2015
Ultra Challenge, Saturday 02 May 2015
Support Lee and his brother Mark with their Challenge events for Ivy.
Does anyone have any contacts for discounted hotel accommodation at any of the challenge locations?
Lee would be pleased to hear from you if you can help.
If you can help please contact Lee by emailing; Leemitchell1975@yahoo.com
Behavioir in the Classroom journal article
Thanks to Colin Riley for this.. have a read, it's not all about 22q, but lots of relevant information
Asda Cheltenham Bag Pack, Sunday 22 February 2015
We have been offered a bag packing opportunity at the Asda store in Cheltenham on 22nd February between 10am and 2pm.
Our Great Big THANK YOU page....
We have some wonderful members and supporters so we would like to say a GREAT BIG THANK YOU.....
The link below will take you to our Thank you page.
maxappeal.org.uk/fundraising/a_great_big_thank_you.......
Virgin London Marathon, Sunday 26 April 2015
Bristol to Bath Marathon, Sunday 25th October 2015
This brand new marathon for the South West, begins in Bristol, the vibrant city of Bridges, Brunel and Banksy, through the stunning South Gloucestershire countryside, ending victoriously in the elegant Roman Spa city of Bath.
Step up the pace and make history as you run city to city in the inaugural Bristol + Bath.
Run for Max Appeal.
Entries now open.
Email Paul@maxappeal.org.uk and confirm your entry.
Go to the event web site
New Year, New Challenge
Max Appeal Mitchell's Miles Challenge, Multi Ultra Endurance Events 2015
My name is Lee Mitchell and I am the proud father of 3 amazing children. Ivy, my 2-year-old has 22Q Deletion. My brother, Mark and I want to raise money and awareness for children and adults who have 22Q deletion by supporting Max Appeal. So we are doing what we can, the only way we know how through ultra endurance challenges!- Read more about Lee's plans and motivation..
No matter how painful these challenges get both mentally and physically, it's nothing compared to what my daughter has gone through and has yet to face. She is my inspiration. We are doing this because we choose to push our limits, and put our health and fitness to good use, Ivy's limits are tested without choice. As a father I can't even describe what it is like to stand by and be helpless, as a parent I'm suppose to protect my daughter, stop any hurt, take away her fears and kiss away the tears. Ivy has more than most and I can't fix it, and that is exceptionally hard to cope with, so this is the only way I know how to actively do something, to be able to make a difference in the long term to Ivy and others like her.
6 Ultra Endurance Challenges
Mark and I are embarking on 6 ultra endurance challenges between May and September 2015.
2015 Challenges:
6 events, 5 days running, 4 days cycling over a 5 month, 815km (506 miles) total:
• 2nd May – Ultra Marathon (106 km/66 miles) Isle of Wight
• 23rd May – Ultra Marathon (100km/62 miles) London-Brighton
• 18th-21st June – Coast to Coast off road Mountain Bike Ride (309km/192miles)
• 27th June – Ultra Marathon (100km/62 miles) Grand Union (London –Chilterns)
• 29th August Ultra Marathon (100km/62miles) London – Cambridge
• 12th September Ultra Marathon (100km/62miles) Thames Path
Can you help?
Lee will need to source some bicycles to complete the challenges and find places to stay while away from home. If you have any contacts with hotel chains, local B&B's around the routes or have any contacts at cycle shops or outlets where he could secure some discounts it would all help with completing his challenges.If you can help please contact Lee by emailing; Leemitchell1975@yahoo.com
Full Ultra Marathon Challenge details can be found at http://www.ultrachallenge.com
Please see the link below for our Just Giving Page if you would like further information and to support our cause.
https://www.justgiving.com/MitchellsMiles/