22q11 syndrome APPG
What is an APPG?As well as taking part in formal parliamentary business, MPs are active in other areas such as within their own political parties and constituencies. They may also take part in informal work at Westminster, such as working with All-Party Parliamentary Groups (APPGs). APPGs are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many involve individuals and organisations from outside Parliament in their administration and activities.
APPG Parliament web site
If any Lords or MPs are interested in joining the group they should contact Jack.
We are very grateful to Jack and his office because they have been tremendously motivated to achieve the APPG.
Jack Lopresti MP web site
@22qAPPG - follow us on TwitterThe aim of the APPG is o increase recognition and understanding of the Syndrome across policy makers and the medical profession. Eventually aiming for, once diagnosed, life-long health strategy for suffers.
Please note this is not an official feed of the house of commons. It has not been approved by either House or its committees. All-Party Parliamentary groups are informal groups of Members from both Houses with a common interest in particular issues. The views expressed in Tweets are those of the group.
Records of the APPG meetings and eventsMax Appeal is acting as the secretariat to the APPG and is funding the group. Meetings and events are listed wit the most recent first. If you have any queries about the APPG then please do contact us.
NB Please note the following required disclaimers:
Publications on this website (unless otherwise specifically stated) are not official publications of the House of Commons or the House of Lords. They have not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these reports are those of the group.
This is not an official website of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these web pages are those of the group.
Contact Max Appeal
AGM 24th October 2016We have seen our members organising lots of good things to promote 22q11 Syndrome and here is another opportunity to raise awareness of 22q11 Deletion Syndrome.
Get in touch with your MP. Tell them about the condition and how it affects your family. We have been really fortunate (through loads of hard work as well) to have our own APPG.
In October 2016 we held the second AGM and have at least another year to work on MPs and tell them as much as possible about 22q11.
We produced a really good report, it went down very well with the MPs. BUT the big 'take home message' from the meeting was to get families to contact their MP.
Please take the time to send the link to your MP...there are some hard facts in the report that just shows how tough a time families have when supporting their child, young person or adult with 22q11 Syndrome.
We need to make sure MPs know the facts as well. Perhaps there is something in the report which you can relate to with your own personal experiences. Hard copies of the APPG report are available to order. Do whack it over to your MP using the link below or the @find your MP link in previous articles below. We want to get it to as many as possible, so it is free to order.
We all know about 22q, but there are LOADS of people who don't, (bless 'em!) YET.
Write to your MP
Meeting 10th May 2016Dr Debbie Sell, from the Great Ormond Street Hospital specialist 22q clinic, spoke about the general profile of people with 22q11 syndrome.
Martin Kennedy spoke about his experience as an apprenticeship ambassador and how apprenticeships would be of benefit to people with 22q 11 syndrome.
Meeting 2nd February 2016Dr Clodagh Murphy, consultant psychiatrist from the Maudsley Hospital, which runs the UKs only adult specialist 22q11DS clinic, and GOS informed MPs about the psychiatric disorders associated with 22q11DS and her extensive experience with the condition.
Max Appeal also circulated its finding of mental health services as revealed by its brief questionnaire.
Meeting 8th December 2015MPs were delighted to hear from Professor Peter Scambler, molecular geneticist at Institute of Child Health in London, about his analysis of recent findings from an Italian study concerning the prevalence of 22q11.2 deletions and duplications in around 9,000 pregnancies.
The upshot of this study, which is borne out by Professor Scambler's analysis, is that 22q11DS is massively undiagnosed within the population.
The results of Max Appeal's questionnaire into examination results and employment successes for adults with the condition was also met with interest. The questionnaire shows that people with 22q11DS appear to enjoy much better than anticipated academic achievements but their employment success is disproportionately lower and this is something that warrants further investigation.
AGM - 15th June 2015This was the first meeting of the group since the general election in May. Fortunately most of the APPG members survived and we were pleased to see so many new members keen to join the group.
The new APPG register was published in September and the 22q11 syndrome entry can be found on page 150.
APPG register 29th September 2015
OFFICIAL APPG LAUNCH - 10th March 2015There was a huge amount of preparation for this meeting both for Jack Lopresti MP's office and for Max Appeal.
It was an exciting opportunity to meet with MPs and other invited guests who were both family members and professionals in the field of 22q11DS.
Ivy Mitchell certainly stole the show!
INAUGURAL MEETING - 2nd December 2014Since the initial meeting with Jack Lopresti MP there has been lots of work going on behind the scenes to draft support from the required cohort of MPs from all of the parties, that is 20 with 10 from the party in power and 10 opposition parties.
Click on the photo to expand to see the full image.
from left to right: Paul Wootton (Max Appeal treasurer), Clodagh Murphy (psychiatrist, GOS and Maudsley Hospitals), Gillian Cassidy (22qNI), Julie Wootton (Max Appeal), Jack Lopresti MP, Carla Attwood (Max Appeal), Claire Hennessey (Max Appeal),Keith Markham (22Crew), Marcus Jones MP and Dr Alex Habel (medical expert).
Everyone was delighted that the APPG was now formally in existence and a further meeting in January is planned with an official launch at the end of February 2015.
INITIAL MEETING - 19th August 2014This meeting was to establish the basis of the APPG and set the goals in place for forming the APPG.
Carla contacted her MP Jack Lopresti and he was very keen to form the Group and so we met with him and Selina, his Office Manager, in Bristol.