A very interesting meeting that Mark attended. Please do read:

The meeting was chaired and opened by Rosemary Bennett from the Times Newspaper, she spoke with passion about the epidemic of mental health issues within the young and the stat that caught my attention was despite the Government's pledge of 1 billion to be spent by 2021 that in fact half of the local authorities will this year be spending less on mental health than last year.

The first talk was by Professor Russell Vinor from RCPCH during which I learnt that 850,000 children and young adults suffer from mental Health issues in the UK. He also backed up my own knowledge by saying that 75% of all mental illnesses start before the age of 24 and so his message was very much that more prevention at an early age is vital.

A short video was played by an organisation called Fixers which was produced and starred a young girl discussing her own issues – I have made a note to check out their website and look through the short movies to see if they have any that can help the 22q11 community.

We then moved onto a short speech by a young person with mental health issues who spoke about the need for the NHS and schools to work closer together which I can only concur with.

Cllr Graham Gibbens then spoke, he sits on the Local Government Association Board and his local Clinical Commissioning Group (CCG) which in effect hold the purse strings. He again spoke about early age intervention being the key and he tried to get the message across about how proud he was that in his time there has been no cuts in mental health budgets. He did let slip that there had been no increase either which in effect is a cut!!!
I will come back to the local CCG's.

Max Appeal friend, Alistair Burt MP was next to take the floor and he once again spoke with the passion and the care I know he has with regards to the issues, he spoke in detail about how he wanted the money pledged by government to be ring fenced but he was denied, so we have a system where the extra 2.5 million a year that has been pledged has to be spent and cannot be carried over, the effect was that some local CCG's could and did use any excess to cover deficits in other areas. I got a better insight into how the NHS works within the UK and was very concerned to hear that the Minister in charge does not have the control over the NHS that many of us believe them to have, in essence if the NHS says it's not doing something then they can and do refuse. He acknowledged lack of suitable and local provisions and the hardship of breaking families apart when a loved one needs to be admitted for mental health issues.
He again mentioned it is the CCG's who spend the money.

Javed Khan the Chief Executive of Barnado's was next and he spoke brilliantly about the issues faced and how services are not being delivered across the board, he mentioned how the transition from child to adult services left a cliff edge. Barnado's want to see a better comprehensive plan in place for all mental health services and that stakeholders (that's us charities) need to come together to campaign as one and that perhaps these campaigns need to take more direct action. He again mentioned early intervention being the key and that also modern technology is becoming a big issue and he recommends that iPads and phones etc are removed from bedrooms, he likened it to inviting a camera crew into your house every night. He also mentioned the need for the NHS to concentrate on the most vulnerable children (that will be us then).

Dr Jon Goldin from the Royal College of Psychiatrists then spoke and he reiterated what had already been said and in particular backed the issues around iPads and technology being a modern curse. He gave some amazing stats which highlights the issues in that 1 in 4 of the population are children yet we only spend 16% of the NHS spending on child services, of this only 6% is on mental health. He mentioned that the NHS and schools must work closer together and that it was scandalous that CAMHS access is only guaranteed if you are physically self-harming or have attempted suicide, currently only 1 in 4 children have their needs met through CAMHS and this is due to lack of funding and insufficient trained staff.

At this point it was opened up to the floor for question time but due to the talks overrunning considerably they only took 4 or 5 questions and sadly I was ove

Conclusions

It was a pleasure to attend in the name of Max Appeal today, although I was very disappointed not to be able to ask a question or two. It's given me a better insight into the workings of the NHS and although everyone agrees the system needs to improve they all kept coming back to the Clinical Commissioning Group as being the people we need to influence. I would say it's become clearer that we need a two-pronged approach and use those at the top to apply pressure ie MP's and ministers but also to start to have a voice in local services, parents of those affected can start this process by attending their local trusts CCG open meetings and letting them know where their service is lacking etc etc
The issue of technology was raised a number of times as well but although good in theory I'm not sure how easily I could persuade my own son to give up the iPad.

Mark Tripp
Max Appeal Trustee

APPG needs your help!

Hi everyone,

Firstly, BIG thank you to everyone who has taken part in our online surveys over the last year or so. It is now coming to fruition! We will shortly have a glossy report for the MPs at our AGM for the APPG for 22q syndromes later this month.

It would be really helpful if you could all write to your MP, I've attached a template on the left hand side under files but you can of course write what you want. This is the link to find your MP so you can email them or even phone them up!

Our current chair Jack Lopresti MP wants to stand down, and MPs generally are all over the shop with Brexit, party conferences and jockeying for better jobs. So we need a new chair... please do contact your MP! It's really important and your letter WILL make a difference. The APPG is a big coup for everyone affected by 22q11DS.

cheers!

Julie
Find Your MP

A poem by Annalisa Sacca

Please find attached a poem about 22q (in Italian and English) written by Annalisa Sacca, the sister of one of Donna M. McDonald-McGinn former students who attended the meeting in Sirmione.

Apparently she is a poet and professor in New York City who originates from Italy. Apparently, she was sitting in the lobby of Hotel Acquaviva and was so taken by the children that she wrote the attached poem which she has given us permission to share.

Her sister, Rosalba Sacca, states that it is more beautiful in Italian – but I leave that for you to decide.

Download both English and Italian versions below.

22q Family Meet up. Have a walk a chat and a cuppa.
Dogs welcome too. 27th October at 11:00 at Temple Newsam House
Further details to follow, or email us at info@maxappeal.org.uk
Temple Newsam House website

Mediaplanet has launched the Genetic Disorders UK 2016 campaign. Here's the link to Adam's story.
www.healthawareness.co.uk/genetics/genetic-disorders/our-genetic-disorders-and-us-read-our-true-stories

2016 Genetics Disorders Campaign

We recently partnered with Mediaplanet on the 2016 Genetic Disorders Campaign in The Guardian newspaper and online at;
wwwhealthwareness.co.uk/genetics

Great North Run 2016. Thank You Team Max Appeal

Team Max Appeal rocked up to the new 5km run at Gateshead in the early hours of Saturday morning, where Archie Wootton ran in the new Max Appeal livery. The atmosphere under the Tyne bridge is always electric when the runners are warming up. Archie ran the 5km in 25mins 26 secs, which placed him 187th out of the 1,000 runners aged 14 years and up. Brilliant result.

Saturday night is the last opportunity to 'carb-up', so over a dozen of us met up at Sabatini's restaurant in Gateshead for a final team meal. Dedicated runners like Terri Morgan were rigid in no-booze before the run; admirable! Everyone enjoys meeting their team mates, getting to know people and

The following morning saw the runners for the half marathon making their long trek to the start line, with a few pausing en-route for a good luck photo at Haymarket. None of the elite athletes in Team Max Appeal stopped off for a sausage and egg muffin on the way, but there were plenty of others that did. This year's pleasant weather meant that bin liners were not part of the uniform (they keep you nice and warm until the gun goes off for your section and are very easily disposed of).

The support squad (Julie, Archie and Mark) face a tough journey to South Shields! (No derisive snorting, please!) The metro is rammed, the roads are either closed or chokka, the ferry from North Shields is overloaded, the only way is by bus or taxi.. so having purchased sandwiches (cleared Pret of brown bread!!) we jump aboard and head off to Gypsies Green to establish base camp at the Max Appeal tent in the bronze enclosure in the velodrome. With food and drinks all lined up, Shelly Chapman sorted to administer sports massages to our fearless runners, we could all start to think about the Red Arrows.

Alex Dyter is our first ever entrant who has 22q!!! Alex came in at a ma-hoosive 1hour 38mins... putting him 2007th out of the 57,000 odd runners. His mum, Zoe, cycled from Newcastle to South Shields after seeing him off at the start line which in itself is worth a serious round of applause. Very proud day for Alex and a wonderful day for 22q!!

BBC coverage of the event came up to scratch with the Max Appeal banner appearing on their live coverage first thing, and then Colin Jackson (Olympic hurdler) dropping by the Max Appeal tent and posing for a photo with Shelly. The afternoon sped by with loads of runners coming to the tent in various degrees of exhaustion and exhilaration, and then they received some proper treatment from Shelly! Sandwiches, chocolates, crisps and a small libation awaited them too, which was very welcome to those who had been adhering to a strict training regime. It is always great to meet up with people and it was Martin and daughter, Chloe, who made the journey from Leeds to experience the truly unique atmosphere of the Great North Run. Team Max Appeal exchanged banter about performances on the day and reflected on the shared experiences; Elvis on the bus stop, the queue at Burger King half way round, the walking club offering half pints of beer, how many children each runner squirted with water in retaliation...

But the serious stuff is how much money was raised by Team Max Appeal... that currently stands at over £17,600 with more coming in every day. Max Appeal gives a HUGE thank you to everyone who ran or supported someone who ran, we can't do the job without people making wonderful efforts like this.

Runners & Times.

Thank you to all of the Max Appeal Runners:

Name Time Age Position

Parvin Boyal 01:37:47 37 1790
Alex Dyter 01:38:41 17 2005
Jack Padley 01:45:41 18 4008
Vicky Igoe 01:52:09 43 6601
Jason Butler 01:52:40 45 6833
Simon Ford 01:53:12 43 7113
Andrew Oetegenn 02:00:14 28 11234
Melanie Woolnough 02:00:48 42 11534
John Doyle 02:01:00 11650
Mark Hale 02:04:27 46 13533
Leon Christodoulou 02:04:57 42 13838
Debra Hogg 02:05:58 42 14388
Louise McVittie 02:05:59 42 14396
Stephen Hogg 02:08:56 44 15997
Donna Morton 02:12:56 45 18151
Linda How 02:16:27 44 20111
Terri Morgan 02:16:36 51 20190
Glenda Burton 02:19:14 56 21679
Stephen Garfoot 02:24:33 32 24492
Annette Barker 02:31:57 43 28110
Jay Walker 02:35:50 35 29823
Paul Willgoss 02:46:18 44 33536
Amy McDonald 02:50:43 48 34785
Rachel Boyle 02:53:38 44 35481
Emma Thompson 02:54:27 38 35659
Tracey Rhind 03:06:17 48 37931
Georgia Wootton 03:12:22 22 38756
Darren Miller 03:12:27 41 38767
Paul Wootton 02:42:54 32486

John Doyle

Leon Christodoulou

Some Wonderful Stories from Parents and children who went to Cranham Camp

Terri Morgan:

Fantastic weekend at Cranham Camp. Met lots of new and old faces. Kids were great. James surpassed himself and impressed me and Lee massively by joining in with everything and chatting non-stop. He brought a friend, which helped, who coincidentally is in the process of waiting on micro-array test for 22q duplication. Joshua, what a fabulous boy. Made a lifelong friendship with James and Sam. Who knew these 22qers could form such great friendships on first sight.
Big thank you to all who organised it. Simon Lonsdale, Caroline Lonsdale Claire Hennessey to name a few. Guy was seriously enthusiastic and roused so much interest. Wood crafting, wood walking, camp fire, dam building etc is was all so much fun.

Shelly Turpin & Joshua

Never in a million years did I ever think I would see Joshua this happy. We attended Waddecar not knowing what to expect. Just thought it would be another holiday where Josh would be left behind due to his heart condition, bearing in mind he was only 3 months post op after 10 hours of surgery. When we got there I was scared let alone Josh but the weekend went off with a bang.

It started with the climbing wall, Josh he said I'm not doing that scary thing but I left josh for 5 mins then went back and he was on the climbing wall. Josh only likes adult company but the weekend was encouraging Josh was having so much fun and laughing. Something that was amazing to see Josh being himself, so we decided that we would do the Cranham camp weekend and again didn't know what to expect. Very long drive but we got there early, set the tent up it was a team effort by all.

Josh would sleep in the tent he heard a noise which really spooked him so we ended up sleeping on the dining room floor... not recommend, so I was shattered but we got going. Josh loved everything going on the archery, wall climbing, shooting, and dam building.

Josh got to meet to other young lads who he spent the weekend with.
They were like glue – inseparable. Josh didn't want me arround when he was with these guys. Fantastic and amazing to see. My boy had some actual friends who he felt comfortable around, that he could be himself. Yet again in a million years did I think this would happen.

Most of us went for a walk on the Sunday. I had to tell Josh to slow down as he wanted to keep up with his new friends, five minutes later the boys came back to Josh and said to him slow down mate we will walk with you. That bought a tear to my eye. I've never seen that in all my years. The walk went on... there was a hill, it felt like a mountain to me, so I don't know how Josh felt, most of the parents came to help Josh as we had to keep stopping.

My story is, Joshua achieved so much plus happiness and laughter but most of all made some best friends.

It taught me that we are not alone in this and no matter how bad you have 22q every parent is going through the same. We have made some amazing friends and permanent friends. I do recommend to try it. Joshua has never laughed so much whatever happens now I have the amazing memories that will stay with me forever. Thank you everyone, trustee's and parents. Hopefully see you all next year.

Well Done Josh

Joshua was also presented with a cup for his outstanding achievements throughout the weekend.

Debbie Payne:

How do you put into words what this wonderful weekend in Cranham as meant to us a family. Had a fantastic time feeling very sad to leave my Max Appeal family see you all next year. Safe journey xxxxx

Avril Southgate:

Would like to say a massive thank you to everyone we met over our short stay at Cranham Camp. The girls and I throughly enjoyed ourselves... and we r definitely coming back next year for the full stay!!! Thank you to everyone for making us feel welcome!!! Hope you all enjoyed the rest of the weekend!!! Xxx

Report from Aaron's Dad Robert....

Last week Aaron played in his first u18 event at swsa Gloucester snooker academy and won first time
It was a great achievement as Aaron had to play 7 matches he won 3-1 4 times won 4-0 once and drew 2-2, then won 2-1 in final so a great start to the season.

Today we went to Poole in Dorset to play in three first regional junior tour easb.

Aaron lost first game 1-2 won next 2-1, won next 3-0, unfortunately Aaron lost 2-1 in quarter finals.

He made highest break of 67 for the day so all in all a good start to the season.

Next week at the swsa Aaron is playing in an adult competition with a field of 67 competitors so will let you all know however he does in them.

Aaron has been really working hard in the week to improve his game, playing snooker is helping him so much. He is learning social skills, self discipline and good behaviour, so come on all you youngsters I would really recommend getting involved with a sport and see what it can do for you.

Thank you for your support on here means a lot for me and Aaron.

November is 22q Awareness Month

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.

Cake Stands & Cake Toppers

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

Extra cake toppers can be ordered here:
"Have a Brew" Max Appeal Cake toppers now available to buy. 25% of each sale goes directly to Max Appeal




https://www.mycupcaketoppers.co.uk/collections/max-appeal

Antibiotic Prophylaxis (AP) during invasive dental procedures

Heart Research UK contacted you last year to make you aware of a NICE review of a clinical guideline that had implications for heart patients.

The NICE guideline was introduced in 2008 and recommended an end to antibiotic prophylaxis (AP) during invasive dental procedures in patients at risk of developing infective endocarditis (IE). IE is a serious infection of the heart valves with a high mortality rate, severe outcomes for survivors and very high associated health care costs.


heartresearch.org.uk/latest-news/news/our-victory-dental-health-ruling

Heart Research UK funded a project led by Professor Martin Thornhill at the University of Sheffield which found a very substantial decrease in the prescribing of AP and a highly significant increase in the incidence of IE since 2008. These findings were published in The Lancet and presented at the American Heart Association's annual scientific meeting.

In September 2015, NICE announced that, despite Professor Thornhill's new evidence, the guideline would not be changed. This is in conflict with advice given by guideline committees in the USA and Europe who recommend AP during dental treatment for patients at high risk of IE.

Now, after pressure from Heart Research UK, Professor Thornhill and an MP, NICE has made a small but significant change to the guideline. It now states that antibiotic cover against IE is not recommended 'routinely' for people undergoing dental procedures.

Heart Research UK welcomes this change which should make it clear that in individual cases, AP may be appropriate. It allows flexibility so that dentists and cardiologists can recommend antibiotic cover when it is in the best interests of the patient, and means that at-risk heart patients can make an informed decision about their treatment.

Heart Research UK is contacting patient groups, charities and cardiac patient support groups to help make heart patients, as well as clinicians, aware of this development. We thought you would like to know about this change to the NICE guideline and would be grateful if you would forward to this anyone else who may be interested.

You can read more on the HRUK website:

On Sunday 21st August 2016 the Ryan family hosted a Max Appeal 22q meet up at Wicksteed Park in Northamptonshire, a new venue for us to use.

We met up with everyone at lunchtime to have a chat and a group photo.

It was a lovely day and we met new families who seemed grateful that this opportunity to meet others had been organised as some were new members and had not met anyone else with 22q11DS before.

The venue seemed to go down well with the families with lots of different things to do.

The Ryan family enjoyed meeting you all and also enjoyed a ride round park on the land train

We would urge anyone thinking of organising a 22q meet up to Go For It

It's a pleasure to help put people in contact with each other

22q Awareness Month

November is 22q Awareness Month

As the main awareness day on the 22nd November approaches we are hoping to help our members with organising lots of fun events and activities throughout the whole of November, events such as 'have a brew for 22q' and family meet ups.
We would also love to promote your 22q stories and more importantly highlight achievements, these will be posted each day throughout November via Facebook, Twitter and the Max Appeal website.

Please email us your pictures and a few words (max 100) telling us how you've overcome any 22q boundaries so that we can show the world. Please include age and first names. For this to be a success and to achieve maximum coverage we would need at least 30 so please help us get behind the month of November and make it the biggest awareness month to date.

Email us at info@maxappeal.org.uk

Max Appeal Trustee Martin Kennedy manned a stall

The BACCH (British Association for Community Child Health) Conference is an annual conference attended by Consultant Paediatricians from all over the Country. In September Max Appeal Trustee and 22q parent Martin Kennedy attended the Conference on behalf of Max Appeal to increase awareness of Max Appeal and the 22q condition as a whole.

Manning a stand in the reception area next to the conference hall he had the opportunity to speak with many of the consultants as they had their breaks and lunch. The majority of consultants spoken to hadn't heard of Max Appeal and there was great interest shown in the work it does. The consensus document proved very popular with many copies being distributed amongst the attendees. A very good two days where the objective of increasing awareness was achieved'.

Bungee Jump for Max Appeal

On Saturday 13th August Lucy Febrey took part in a bungee jump on behalf of Max Appeal. She raised a fantastic £370 for Max Appeal.

This is her story:
Mum couldn't come and watch as she was so worried !!. Saturday was so exhilarating, it was incredible yet so scary. I love that when my cousin Elliott grows up will be able to look back and hopefully be proud of me. I loved it, it was such an amazing experience it was wonderful - I'm so grateful that I was able to raise money and awareness for such an amazing charity that helps so many people. I can't wait to do something in the future to raise more!!! I'm hoping for my next adventure to be a skydive!!!

Lucy Febrey

Good luck to all our Max Appeal runners taking part in this weekend's race. It's not too late to encourage them with your good wishes. To sponsor them please visit ;
https://www.justgiving.com/maxappeal/donate
https://www.justgiving.com/maxappeal/donate

'1,364 people in the UK donated organs after their death, enabling 3,519 deceased donor transplants utilising 3,932 organs. A further 3,779 patients had their sight restored through a cornea transplant. Living donors continued to make a significant contribution across the UK, with 1075 living donors, most donating a kidney. The overall number of living donors decreased slightly for the second year running and NHS Blood and Transplant is working with transplant units to try to reverse this trend. Despite steady progress in 2015/16 there is still much to do if the UK is to achieve the stated ambition of the Taking Organ Transplantation to 2020: a UK strategy and be among the best in the world. Increasing the numbers of people who consent to organ donation remains a significant challenge.'
Activity Report

Dr Samuel Chawner

WRITES Dr Samuel CHAWNER:
It was a pleasure to attend the recent International 22q11.2 Conference in Sirmione, Italy, sponsored by the 22q11.2 society. This year was a special occasion as it was the 10th biennial meeting, the inaugural meeting being in Strasbourg 1998. The meeting featured a mix of outstanding invited speakers and selected abstracts, presenters included top 22q11.2 researchers and healthcare providers from 24 countries around the globe.

The conference has two components, the professional conference and the family meeting. The professional conference provides an opportunity for 22q11.2 researchers from around the world to present latest research findings, share research tips and form international collaborations. In the UK it is rare that I meet other academics researching 22q11.2, so it was truly great to meet up with so many researchers all focusing on 22q11.2.
The meeting was opened by Professor Peter Scambler and Professor Donna McDonald-McGinn and Professor Ann Swillen was presented with the Angelo DiGeorge Memorial Medal of Honor to recognise her outstanding contribution to 22q11.2 research. The schedule was packed, over the three days there were 100 presentations covering a range of topics including cardiac development, immune function, child mental health, brain development, adult mental health, genetics, 22q11.2 duplication, and psychosocial issues.
It was a privilege to present during the child mental health session. I reported findings from Cardiff University's ECHO study. I found that many children with 22q11.2 exhibit autism traits but the profile of symptoms seems to be different from children with autism without 22q11.2. I would like to thank the many Max Appeal members who contributed to this study. There was a lot of interest in the talk and researchers from other countries are willing to share their autism data to see if this is a world-wide trend. I also to need to thank the 22q11.2 society and Maxappeal for providing a travel award so I could attend the conference.
On the last morning of the conference there were exciting talks about a new drug trial and a new cognitive remediation intervention for 22q11.2 individuals. These studies are still in the very early stages and but there was a lot of interest in whether these potential treatments will prove effective in helping individuals with 22q11.2. It will be great to see what new findings will be presented at the next conference in 2018.

Wendy arranged a wonderful 22q family meetup at the Sensory Zone in Warrington.
Max Appeal donated the money towards the day.
Contact us if you would like help towards arranging another 22q family meetup. It's a great way to meet up with other families and share similar experiences.

Thank you to everyone who came today I know there was only a few of us but it was lovely meet some new families. The kids had a blast and they all got along great xxx

News from the 2016 International 22q11.2 Family Meeting in Sirmione, Italy from a parent's perspective

July 2016 saw the latest meeting of the International Brain Behaviour Consortium meeting of the centres working on 22q11.2 Syndrome, the 10th Biennial International 22q11.2 Conference with a Scientific Meeting for professionals, followed by the Family Meeting which was sponsored by AIdel22, Max Appeal and The International 22q11.2 Foundation Inc.

Full story, please click download button below:

What Max Appeal camp meant to me...

When first going to Max Appeal camp I was quite nervous to meet everyone. But by the end of the weekend everyone was talking to each other. Everyone felt more confident within themselves and they also pushed themselves to exceed more. I really enjoyed the camp fire singing. That really bought out my shyness and I felt very confident after that. I would do it again and I would not say no to it! I think everyone enjoyed the first Max Appeal camp up north at Waddcar Scout Centre! It was great fun and a lot of laughs !

Alicia

I've just come back from the most amazing experience at Waddecar helping out with the Max Appeal activity weekend. The weekend started on the Friday with a meet and great and an early tea ably provided by fellow trustee Caroline Lonsdale, the food was amazing throughout the whole weekend and everyone was grateful for the amazing effort made by herself.

Lissie needs mentioning as well for her efforts assisting Caroline and also Joshua who I can confirm makes the most amazing cups of tea I have ever tasted and his expertise will be put to the test at Cranham I'm sure.

Whilst we acclimatised to the camp Simon Lonsdale set about organising the activities for the weekend which started with tackling the indoor climbing walls, sadly the travelling had taken its toll on me and despite the noise that Max Appeal families can make I managed to sleep through it, the Pirates activity trail and bug hunting in the pond followed the next morning where a nights sleep in our bunks saw us all fully rested.

The Saturday afternoon was followed up with a group trip to Blackpool where we walked the sea front before heading of for some fish and chips and equally low calorie desserts. This reporter also wants to go on record that despite rumours to the contrary he thoroughly enjoyed the Ferris wheel experience with the girls, the kissing of the ground upon returning to the ground was a mere accidental slip.
Families continued to join us throughout the Saturday and Sunday and it is testament to how those with 22q11 their families understand each other that they fitted in seamlessly. The day was finished off with a movie night back at base.

On Sunday morning the group headed off to the lake and enjoyed themselves kayaking and raft building, everyone enjoyed themselves thoroughly as we recreated all the famous scenes from the titanic and in some cases Finding Nemo, all with with a happy ending. Once again all the kids were amazing and all had Nike moments by 'just doing it'. Sadly however this reporter was the subject of jealousy from others as he showed Olympic standard rowing skills and ended on the end of a savage assault and taking a swim with the fishes much to the groups amusement. Talking of Olympic standard rowing both myself and Claire Hennessey have been scouted by team GB to take part in Tokyo 2020.

After showering and a warming lunch of homemade soup we made our way to the rifle range where Simon tutored everyone in marksmanship with the the air rifles, young or old, shy or confident everyone took part once again and took the responsibility placed on them in their strides, who would have know the 22q11 world has such fine marksmen and woman ?

Sunday night was barbecue night and once again the kids were in their element as they fetched the firewood and helped Simon build a camp fire. We were also joined by the grandparents of Anna who were celebrating their 50th wedding anniversary. After a watching Chris Meldrum fail with the log cutting and then excel at eating twice his body weight in meat and bananas we participated in the obligatory camp fire sing song, once again Simon's scouting skills came in use as he led the rousing choruses. The highlight was Lissie step forward to lead the group with a wonderful song and dance routine, nerves what nerves !!!!

Sunday morning was spent hoovering up the remaining cooked breakfast ingredients before we set off for a group walk through the local hills and forest, it was a wonderful calming way to finish what was an amazing weekend full of laughter, adventure, courage, understanding, empathy and zest and fun.

Special thanks must go to Simon and Caroline Lonsdale, Claire Hennessy and Chris and Helen Meldrum for putting together such a wonderful weekend, those thanks must be extended to all the families who participated because they were the real stars of the weekend.

Memories have been made and I look forward to this becoming an annual event on the Max Appeal calendar.

Mark Tripp
Max Appeal Trustee

News release: 19 July 2016

Max Appeal hero receives government award
for her outstanding contribution supporting children
with rare genetic condition 22q11 DS

An outstanding charity volunteer from Bristol has received an 'Excellence in public health and wellbeing 2016 Award' from the Minister for Public Health, Jane Ellison MP, for her work with one of the few specialist clinics for the rare condition 22q11 DS in the UK based in Bristol.

Rowena Hannam pictured with her nominator Jack Lopresti MP at the House of Commons

This award celebrates the achievements of people who are tackling health challenges in their communities. As a mother of a child with 22q11 DS, Rowena uses her personal experiences to help other parents and is a highly valued member of the medical team.

Dr Julia Cadogan, lead clinical psychologist at the 22q11 DS clinic says:
'Rowena's advice, warmth and understanding really helps the families to feel less alone and more confident about how to cope with the many issues they have to face now and in the future. Her contribution makes a tremendous difference and helps make the clinic work well.'

Jane Ellison, MP says
'Across the country unsung heroes are leading local initiatives that are improving the nation's health and wellbeing. Such projects have a special place in our public health system and it is only right that we recognise the people who make them a success.'


Further information:
Emma Pelling, emma@pellingpr.co.uk, 07958 558172.

After a light breakfast a somewhat apprehensive but excited group consisting of Martin Barter (group leader), Simon Lonsdale, Chris Meldrum, Steve Robinson, Suzanne Starkey, Darren Daniel, Lee and Terri Morgan, Mike and Maria Harvey-Ashcroft, Debbie Payne and myself met outside the Station Inn Ribbleshead to begin our challenge.
We had decided to take the unconventional route and start in a clockwise direction tackling Pen-y first, followed by Ingleborough and finally Whernside. By taking this route we were all aware that the two steepest parts of the walk would now be descents and they proved to be very steep indeed.

After the obligatory photo shoot at the start line we left at 7am on the dot and started the long 7 mile walk to Pen-Y-Ghent, it soon became evident we had some challenge ahead as the summer sun was shining down which made conditions very warm. Slightly behind schedule we reached the peak and celebrated as a group before attempting the climb down, a few of the group decided to take the less steep route back down and in doing so added a few extra miles to the day whilst the foolhardy amongst us walked and climbed down the steep descent. It was at this point we started to encounter the many hundreds of walkers coming the other way, not only was our legs and feet to be tired at the end of the day but so was our voices as every single walker took the time to say hello, the support and encouragement given and received was amazing and very gratefully received.

After the descent we made our way to the village of Horton and our first refreshment point where we were met by the wonderful sight of Chris Payne, Michelle Hopkins, Martin Kennedy and Chloe Kennedy who greeted us with bacon sandwiches, cups of tea and energy drinks................... Every single one of us was delighted to see them as the sun was having an effect on us all at this stage. It was very clear that without the support of our back up team we would have struggled to complete the challenge and a huge thanks go to them all. As a side note Chris Payne took the opportunity to add to our fundraising by taking on the unofficial role of car park attendant and charging visitors a small fee.

After a slightly longer than planned stop we started off towards Ingleborough, the leading group ably led by Simon Lonsdale started off ahead whilst the slow plodders stuck together in a group led by Martin Barter. It wasn't long into the climb that it became evident that Debbie had injured her knee and was struggling, with the bit between her teeth and a huge show of courage and determination very rarely seen she carried on regardless and made it to the summit. This was one of the bravest things I have ever seen as the easy option was to turn back, with encouragement and support from Martin she made it. Coming down was always going to be difficult as the descent was very steep and not for the faint hearted, in the distance we could see the leading pack reaching the bottom and special mention must go to Terri Morgan and Maria Harvey-Ashcroft who both suffered with attacks of vertigo. Despite this Terri made the descent that she had been dreading and Maria very bravely confronted her fears as well and attempted to climb down, with Debbie also struggling heavily it was decided at this point the safest option was for Martin to walk Maria down a different route whilst myself and Mike assisted Debbie Payne. Maria knew she would not have enough time to complete the Whernside climb but what she wasn't aware of was that she needed make her way back via two other peaks. So if the three peaks weren't hard enough Maria managed to complete four peaks and still be the first one back in the pub !!!!!!

After a slow descent down Ingleborough we made the last refreshment point, again the sight of the team was absolutely amazing and most welcome. Sadly, the light was beginning to fade and myself and Mike had to take the gut wrenching decision not to attempt the walk as we were ill prepared for dark hours, Debbie on the other hand needed an awful lot of persuading that she wasn't going too complete Whernside either. In the distance we could see the tiny specs that were Simon Lonsdale, Chris Meldrum, Steve Robinson, Suzanne Starkey, Darren Daniel, Lee and Terri Morgan as they disappeared over the summit of Whernside, they had reached all three peaks inside 12 hours, working together they had completed one of the toughest challenges in the country and they can all rightly feel very proud of themselves.

After making sure Debbie was returned safely to the pub alongside Maria and Martin myself and Mike got the back packs on and started to walk up the descent so we could meet with the other group. After 30 minutes we met them alongside the very picturesque Ribbleshead Viaduct and walked with them to the finish line.

The Yorkshire three peaks was an amazing experience with an amazing group of Max Appeal parents and friends who came together to form a team that was strong enough to either complete the walk or return back safely to base. The experience will stay with me for ever and I look forward to the Max Appeal Yorkshire Three Peaks walk 2017!!!!!!
A massive thank you to all those who assisted with the refreshments and for everyone who walked on the day, we have so far raised an incredible £4000 for Max Appeal.

STOP PRESS – On the 24th September Myself, Martin and Mike will return to Yorkshire with both Debbie and Maria and we intend to finish what we started by making sure they both reach the summit of Whernside.

Fifth Annual Meetup at Scarborough Beach

It was good to see new families and old at the fifth annual Max Appeal 'Day on the Beach' meet up on Scarborough beach on Sunday 24th July. This meet up always attracts a good attendance and is a very relaxed affair where everyone can catch up with each other, have a general natter and meet new friends. The weather was particularly kind and sunny in the morning and this year we had the luxury of a beach hut to make teas and coffees thanks to Tracey Muschamp.

We also manged to miss the forecast rain until home time! Everyone is welcome to this annual event so please keep an eye open for it next year!

With a selection of distances available throughout the day including a 10 mile, 10k, 5k and Family Mile event, runners of all ages and abilities can come along to take on a challenge while enjoying a summer festival atmosphere.
www.greatrun.org/news-and-media/news/cats/great-donington-run/56

Quiz Night

Quiz Night in Aid of Max Appeal
Doors open at 7pm, starts at 7.30pm
For more info please email: anita.bennett@brothersofcharity.org.uk
Voice for All Room
Lisieux Hall
Dawson Lane
Chorley
PR6 7DX
All Welcome

New Website Launched

I'm delighted to let you know about an innovative new website launched this week. Its designed to help parents and families interpret the statistics about survival after children's heart surgery that are published annually by the national audit body. The website is: http:childrensheartsurgery.info


Children's Heart Surgery website

Read about why we developed this website in the Guardian:
Guardian Newspaper article

and this news item by the Children's Heart Federation:
CHF news item