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Consensus Document Complete!International Conference in Florida
Splash Camp 2012New Born Screening in USA
Fundraising Roundup
iinn tthhiiss iissssuuee......
news and views from
DECEMBER 2012IS PRODUCED BY MMAAXX AAPPPPEEAALL15 MERIDEN AVENUE, STOURBRIDGE, WEST MIDLANDS, DY8 4QN
[email protected]++ 44 44 (( 00 )) 11 33 88 44 88 22 11 22 22 77
This is what it should
pretty well look like
on your computer:
You won’t have seen
the database that
sits behind it but
that is the workhorse
for Max Appeal and will help us communicate
with our members and collaborate with medical
researchers. There are still more developments
in the pipeline...watch this cyberspace!!
CHECK OUT THEMAX APPEALQR CODE!
That is a quick response code, matrix barcode
or two dimensional code…well whatever
they’re called we’ve got one, and your
Smartphone will take you right to the Max
Appeal web site… provided you’ve got the app!
If not - download a QR reader for free.
(Ed. Oh dear, here we go! Technology!)
Everyone likes a challenge and it's even better when you know you are supporting a good cause
like Max Appeal. So if it's trekking in Peru, cycling from London to Paris, or for any exciting overseas
or Uk expeditions we can work together with our challenge partner to help you find the perfect
challenge for you. What ever you like to do contact [email protected] and we will help you
make your challenge dream come true!
Here's an idea from David and Mark. They are taking part in the Crumball Rally in June 2013.
Two fundraisers from Derby are embarking on a 2,000 mile journey in a banger to raise money
for charity. David Reeves (24) and Mark Sandercock (39), from Sinfin, will be taking part in a once
in a lifetime event which will see them drive along some of the locations used in the original The
Italian Job film. The pair will be buying a car worth less than £500 to take part in the Crumball Rally
in June 2013 to raise money for The Max Appeal.
David said “The Max Appeal have done a lot to support my niece, Laura (13), and the family for a number
of years, and this is our way of saying thank you for their great work. Laura was first diagnosed with
22q11 when she was four years old after years of battling with the NHS. Her mother, Lisa, was a young
mum with her first child and was often labelled as a neurotic mother. When Laura was eventually diagnosed
the work to support her health could start.”
Lisa (Laura’s Mum) said “Laura had to have two operations at a young age, and has a minor heart
defect which we have to keep an eye on. The biggest challenge, by far, is supporting Laura’s social
interaction and confidence, which Max Appeal have been influential in.”
David added “The whole trip is self-funded, so every penny that’s donated will go to the Max Appeal.”
If you’d like to sponsor David and Mark, or buy advertising space on the car, please visit
www.facebook.com/crumballrallyformaxappeal
set yourself a challenge!
@MaxAppealUK
Email us for more details!
HHAAVVEEYYOOUU SSEEEENNTTHHEE NNEEWW
WWEEBB SSIITTEE??
HHAAVVEEYYOOUU SSEEEENNTTHHEE NNEEWW
WWEEBB SSIITTEE??
STOP PRESS!
If you’d like to challenge yourself and help us raise money for Max Appeal please let us know
!
Contact ccllaaiirree@@mmaaxxaappppeeaall..oorrgg..uukk and we’ll help make your challenge come true!
What’s a consensus document? Well, we didn’t really know to start with! Richard Herriot, PaediatricImmunologist in Aberdeen, explains“The aim of this ambitious project was principally to compile a comprehensive and universally agreed lifelong care plan for people with 22q11DS within the framework of theNHS.” He also says that it is a “practical and accessible information resource.” (Ed. we like that!)
The concept was brought to us by Dinakantha Kumararatne, Paediatric Immunologist at Addenbrooke’sand Max Appeal trustee. The development committee was chaired by Richard Herriot and the chapterswere then written by specialists in specific fields who called upon their colleagues to review and support the work. In the end we estimate more than sixty experts have contributed to the consensusdocument from around the country. (Ed. being cheeky here… Just goes to show that doctors canagree sometimes!)
We have a parent/carer version of the consensus which uses laymans terms to describe the issuescovered by the consensus; the full document is pretty hefty! You can get copies of both, either by downloading them in
pdf from the website or by contacting us and requesting printed copies at www.maxappeal.org.uk or email [email protected]
Richard Herriot also said: “The Committee wishes to express its gratitude to everyone whohas contributed in any way to the development of this document and to Max Appeal! for theopportunity to participate in this project.”
Actually, Max Appeal is extremely thankful to the expert committeefor their endeavours and perseverance! Particularly we wouldthank Richard, Jeremy Allgrove of the Royal Free for histireless efforts as editor, Hilary Joyce (Max Appealtrustee) for the parents’ version of the document, and toKumar for instigating this project and seeing it though with us.
DAN THOMASOLYMPIC TORCH BEARERDan took the first leg around Saffron Walden7th July! What a fabulous privilege. Well done Dan!
It's been quite a year for Dan, as he is also akeen cricketer. He was selected for the EssexDisability Cricket Club team and he was alsoasked to join the England Development squad.
www.london2012.com/torch-relay/torchbearers/torchbearers=daniel-thomas-3316/index.html
DAN WITH ESSEX CC 1ST TEAMDan joined the Essex Cricket Club first team forthe day, as well as the England developmentsquad. He helps to coach junior players.
Julie and myself represented Max Appeal at The
8th Biennial International 22q11.2DAS Conference.
This 5 day meeting was held in July, with parallel
events running on several days the two of us
tried to cover as much of the meeting as was
humanly possible. We decided to split Saturday
and Sunday with myself attending the
professional talks while Julie met families, took
part in a zumba session with some mothers and
leaders of other support groups and enjoyed
some of Florida’s sun, heat and humidity. I spent
most of those two days (and the next two!) sat
in air conditioned bliss taking notes as fast as I
could. With pages of scribbled notes to work
through I am still wondering who had the best
bargain there!
The meeting started with the award of the Angelo
DiGeorge Memorial medal. It was presented by
Prof Scambler of Great Ormond St Hospital
and Anne Bassett of Toronto to Donna
McDonald- Mc Ginn.
Then on Monday it was the parents turn to sit
inside and listen to talks. After an introduction
from the organising committee Julie was awarded
the inaugural ‘Unsung Hero Award’. Later I found
this note left on the speaker’s desk. “A woman
THE CONSENSUS DOCUMENT PROJECT IS
COMPLETED!
MICKEY MOUSE, DONALD DUCK ANDTHE 22Q11.2 DELETION SYNDROME by Hilary Joyce
Left-Right - Ann Swillen from Belguim, DonaldDuck, Donna McDonald-McGinn from
Philadelphia and Julie Wootton.
who is passionate, bright, determined, articulate
and driven beyond belief. A woman who has a
clear vision. A woman who has helped make the
world a better place for children, adults and
families affected by 22q. A woman who is a TRUE
UNSUNG HERO.” A wonderful and well
deserved tribute to Julie. Unfortunately due to
low light levels in the large room I was not able
to take a photograph of the presentation
to show you.
Then followed another two days of talks aimed
at the parents rather than the professionals.
These were often repeats of the talks given to
the professional. Sometimes the same topic was
covered in simpler terms but not always. Still at
least it was a revision exercise for me.
Over the four days I learnt that many
Americans can fit in more words per minute
than most English speakers. Slides containing
detailed information would disappear before I
could read them to the end and at times I felt
quite bewildered and befuddled by the sheer
amount of information packed into talks which
were sometimes as short as 5 minutes. With
such a time constraint most speakers were
determined that every second had to count.
There were a few lighter moments such as the
reception for speakers (ask Julie about her
hangover!) ( Julie says: “it was all the fault of
Maria Kamper from Australia, normally I wouldn’t
touch a drop!”) and a barbeque open to all.
Unfortunately an hour before the barbeque
was due to start a thunderstorm swept in and it
was held indoors instead.
Now I have to go though pages of rough notes
and try to write some articles for Max Appeal
to publish to give you an update of what is
happening out there to help everyone affected
by the 22q deletion syndrome.
3
in the news... A ROUNDUP FROM MAX APPEAL
WHAT’SINSIDE...SPLASH CAMP....................................4
FIRST MEET IN NORTHERN IRELAND.........................5
22q AT THE ZOO..............................5
PULSE OXIMETRY..............................6
NEW BORN SCREENINGIN THE USA........................................7
SAFE & SUSTAINABLE.......................7
FUNDRAISINGACHIEVEMENTS............................8-11
NEW CHALLENGES........................12
WEBSITE UPDATE............................12
After four years labour on the consensus document we don't wantit to become a monument to printing or prop up wobbly deskssomewhere, so we will be working very hard to get the message out toparents and professionals alike, and we have money from Jeans for Genesto do this! Look out for regional meetings close to you; we will post, email,facebook, twitter and put notices on the web site. We'd like to organise a medicalpanel, so we have experts to call upon for advice, a parent panel to help us achieve our information standardsobjectives, and a teens council so we can have feedback and steerage on future activities and information needs.Lots of projects in the pipeline and we'd like to have as many of you engage with Max Appeal as possible...after all that's what it's all about!
M
AXAPPEAL.OR
G.U
K
FOR
MOR
EINFOVISIT
M
AXAPPEAL.OR
G.U
K
What’s a consensus document? Well, we didn’t really know to start with! Richard Herriot, PaediatricImmunologist in Aberdeen, explains“The aim of this ambitious project was principally to compile a comprehensive and universally agreed lifelong care plan for people with 22q11DS within the framework of theNHS.” He also says that it is a “practical and accessible information resource.” (Ed. we like that!)
The concept was brought to us by Dinakantha Kumararatne, Paediatric Immunologist at Addenbrooke’sand Max Appeal trustee. The development committee was chaired by Richard Herriot and the chapterswere then written by specialists in specific fields who called upon their colleagues to review and support the work. In the end we estimate more than sixty experts have contributed to the consensusdocument from around the country. (Ed. being cheeky here… Just goes to show that doctors canagree sometimes!)
We have a parent/carer version of the consensus which uses laymans terms to describe the issuescovered by the consensus; the full document is pretty hefty! You can get copies of both, either by downloading them in
pdf from the website or by contacting us and requesting printed copies at www.maxappeal.org.uk or email [email protected]
Richard Herriot also said: “The Committee wishes to express its gratitude to everyone whohas contributed in any way to the development of this document and to Max Appeal! for theopportunity to participate in this project.”
Actually, Max Appeal is extremely thankful to the expert committeefor their endeavours and perseverance! Particularly we wouldthank Richard, Jeremy Allgrove of the Royal Free for histireless efforts as editor, Hilary Joyce (Max Appealtrustee) for the parents’ version of the document, and toKumar for instigating this project and seeing it though with us.
DAN THOMASOLYMPIC TORCH BEARERDan took the first leg around Saffron Walden7th July! What a fabulous privilege. Well done Dan!
It's been quite a year for Dan, as he is also akeen cricketer. He was selected for the EssexDisability Cricket Club team and he was alsoasked to join the England Development squad.
www.london2012.com/torch-relay/torchbearers/torchbearers=daniel-thomas-3316/index.html
DAN WITH ESSEX CC 1ST TEAMDan joined the Essex Cricket Club first team forthe day, as well as the England developmentsquad. He helps to coach junior players.
Julie and myself represented Max Appeal at The
8th Biennial International 22q11.2DAS Conference.
This 5 day meeting was held in July, with parallel
events running on several days the two of us
tried to cover as much of the meeting as was
humanly possible. We decided to split Saturday
and Sunday with myself attending the
professional talks while Julie met families, took
part in a zumba session with some mothers and
leaders of other support groups and enjoyed
some of Florida’s sun, heat and humidity. I spent
most of those two days (and the next two!) sat
in air conditioned bliss taking notes as fast as I
could. With pages of scribbled notes to work
through I am still wondering who had the best
bargain there!
The meeting started with the award of the Angelo
DiGeorge Memorial medal. It was presented by
Prof Scambler of Great Ormond St Hospital
and Anne Bassett of Toronto to Donna
McDonald- Mc Ginn.
Then on Monday it was the parents turn to sit
inside and listen to talks. After an introduction
from the organising committee Julie was awarded
the inaugural ‘Unsung Hero Award’. Later I found
this note left on the speaker’s desk. “A woman
THE CONSENSUS DOCUMENT PROJECT IS
COMPLETED!
MICKEY MOUSE, DONALD DUCK ANDTHE 22Q11.2 DELETION SYNDROME by Hilary Joyce
Left-Right - Ann Swillen from Belguim, DonaldDuck, Donna McDonald-McGinn from
Philadelphia and Julie Wootton.
who is passionate, bright, determined, articulate
and driven beyond belief. A woman who has a
clear vision. A woman who has helped make the
world a better place for children, adults and
families affected by 22q. A woman who is a TRUE
UNSUNG HERO.” A wonderful and well
deserved tribute to Julie. Unfortunately due to
low light levels in the large room I was not able
to take a photograph of the presentation
to show you.
Then followed another two days of talks aimed
at the parents rather than the professionals.
These were often repeats of the talks given to
the professional. Sometimes the same topic was
covered in simpler terms but not always. Still at
least it was a revision exercise for me.
Over the four days I learnt that many
Americans can fit in more words per minute
than most English speakers. Slides containing
detailed information would disappear before I
could read them to the end and at times I felt
quite bewildered and befuddled by the sheer
amount of information packed into talks which
were sometimes as short as 5 minutes. With
such a time constraint most speakers were
determined that every second had to count.
There were a few lighter moments such as the
reception for speakers (ask Julie about her
hangover!) ( Julie says: “it was all the fault of
Maria Kamper from Australia, normally I wouldn’t
touch a drop!”) and a barbeque open to all.
Unfortunately an hour before the barbeque
was due to start a thunderstorm swept in and it
was held indoors instead.
Now I have to go though pages of rough notes
and try to write some articles for Max Appeal
to publish to give you an update of what is
happening out there to help everyone affected
by the 22q deletion syndrome.
3
in the news... A ROUNDUP FROM MAX APPEAL
WHAT’SINSIDE...SPLASH CAMP....................................4
FIRST MEET IN NORTHERN IRELAND.........................5
22q AT THE ZOO..............................5
PULSE OXIMETRY..............................6
NEW BORN SCREENINGIN THE USA........................................7
SAFE & SUSTAINABLE.......................7
FUNDRAISINGACHIEVEMENTS............................8-11
NEW CHALLENGES........................12
WEBSITE UPDATE............................12
After four years labour on the consensus document we don't wantit to become a monument to printing or prop up wobbly deskssomewhere, so we will be working very hard to get the message out toparents and professionals alike, and we have money from Jeans for Genesto do this! Look out for regional meetings close to you; we will post, email,facebook, twitter and put notices on the web site. We'd like to organise a medicalpanel, so we have experts to call upon for advice, a parent panel to help us achieve our information standardsobjectives, and a teens council so we can have feedback and steerage on future activities and information needs.Lots of projects in the pipeline and we'd like to have as many of you engage with Max Appeal as possible...after all that's what it's all about!
M
AXAPPEAL.OR
G.U
K
FOR
MOR
EINFOVISIT
M
AXAPPEAL.OR
G.U
K
W5 in Belfast's Titanic Quarter provided a great family friendly venue, the children (including thebig ones pushing the buggies) thoroughly enjoyed the interactive science based attraction and allhad a good lunch with a small pitch asking for volunteers for our parent panel. We were pleasedto meet up with some families from Heartbeat NI which is the thriving family support group forchildren in Northern Ireland.
Also, and by a complete coincidence, while investigating the excellent indoor market in Belfast, theWootton's (literally, as in "Oops, sorry!") bumped in to Margaret Curtin of the Irish (Eire) 22q groupwho happened to have travelled up from Cork! The event was huge fun for everyone and MaxAppeal is delighted to have spread its wings from mainland Great Britain to now have covered thewhole of the United Kingdom. The next NI gathering is warmly anticipated at the end of January 2013!
BARBEQUEAfter hot drinks and amazing home madecakes.. we started to prepare for another SplashCamp tradition, our Saturday evening BBQ.
We had to reorganise things and use thekitchen facilities as it continued to rain allevening. However, the weather didn’t dampenany one’s spirits and Simon and Paul Wootton,Max Appeal Trustee soon took over the cooking.
The children continued to get to know eachother and it didn’t take much persuading for anearly night when bedtime approached as theywere all very tired after an active but enjoyableday. More food…..and chocolate cake.
It was a slow start at breakfast on Sunday, with morechildren choosing the option of having a ‘lie in’.
Despite that everyone was soon ready for theirfinal session of water sports. One team
tried their hand at raft building andthe others opted for sailing. This
time the weather was much betterand we even saw the sun.There was enough wind acrossthe lake to fill the sails and thefun boats were soon speeding
across the water. After building asuccessful raft and paddling around
the lake some of our party enjoyed atrip on a speed boat and a few even jumpedinto the lake and swam ashore.
We finished up with a lovely lunch and then itwas time to pack up our things and tidy theCentre before heading home.
Everyone thoroughly enjoyed the weekend andI’m sure they had lots of stories to share withtheir family and friends. We hope it was positiveexperience for everyone who came along.
It was good to see all the lovely comments andmessages from both children and parents aboutthe weekend.
This was our fourth visit to South Cerney Outdoor Education in Gloucestershire for our Splash Camp weekend ofwater sports activities. Families arrived on Friday evening and everyone soon settled into tents, log cabins andcaravans, with a few families opting for the comfort of B&B’s or a local hotel. Everyone soon got togethermeeting up with new families or renewing old acquaintances. The children were soon fed and enjoying thefacilities and they were all extremely excited about the weekend ahead.
We were soon exploring our new surroundings and Simon pulled a local crayfish out of the lake…it was huge!It was safe though, as no BBQ was planned for the first night, otherwise it might have found itself on the menu!
Our volunteers, Fran, Caroline, Simon and Claire were kept busy in the kitchen, as it’s amazing the affectthe outdoors has on promoting a good appetite. It seemed as if there was a continuous supply of food being prepared throughout the weekend! I’m sure Fran and Caroline definitely felt it was like that!
MAKE A MEALWITH MAX APPEALThis year we were running another activity atthe same time and a group of young peoplewere taking part in a one day cookery school.
The idea was to plan their menu forthe day, budgeting and shopping atthe local Farmers Market and thencooking all the dishes and enjoyingthem together. A local cookeryschool, worked with the youngpeople for the day. They explainedthe benefits of healthy eating andpreparing your own food and also how toshop locally with a small budget. The youngpeople even practiced their maths skills as theyhandled the money needed to make the purchases.
New cookery skills and techniques weredemonstrated to the young people and theysoon realised how much fun it was to cook withfriends. We were all amazed at what was beingproduced and the high quality of the finisheddishes. Chloe’s dad, Martin managed to includehimself in all the’ tastings’ and was even invitedto share the meal at the end of day withoutdoing any of the cooking. We all thought hedeserved a special certificate!
TEAM MAXEveryone was up bright and early on Saturday,and after breakfast we were soon ready for aday of activities on the water. We were kittedout with wet suits, waterproofs, life jackets andsafety helmets. We divided ourselves into twoteams and enjoyed kayaking and sailing, withsome of the parents in support of the youngermembers of the group and those who neededthe additional help. Although the weather wasn’tgreat as yet more rain descended on us everyonegot fully involved in the activities on offer. Aftera short break for lunch it was back on the waterto try out some further skills. The children quicklylearnt how to use the funboats and kayaks andthey all amazed themselves. It‘s a great way toboost their confidence and have some fun.
INTERNATIONAL 22Q AWARENESS DAYThis event was again spectacularly well attended! Around 350 people went to five venues; Bristol, Chester,Scarborough Beach, Edinburgh and Whipsnade, raising awareness of 22q deletion conditions... on Sunday 22nd April... (of course!) even more people than last year and a great way to meetother families and have a good day out.
Special mention must be made to ApelElain for their generousdonation to support families attending the day. We are also verygrateful to Chris Ryan's company Ashgoal for their massivesupport at Whipsnade which has enabled the largest turn outin the UK at a single venue... possibly the world... Thanks forthe support of the local organisers for each of the venues:Nat Cook, Jayne Rostron, Martin Kennedy, SarahGoodyear, and Chris and Sarah Ryan.
OUTA
NDABOUT
EVENTS & MEETIN
GS
splash camp!
First family meeting inNorthern Ireland
A splashing weekend had by all!...
2222QQ AATT TTHHEE ZZOOOO
5
W5 in Belfast's Titanic Quarter provided a great family friendly venue, the children (including thebig ones pushing the buggies) thoroughly enjoyed the interactive science based attraction and allhad a good lunch with a small pitch asking for volunteers for our parent panel. We were pleasedto meet up with some families from Heartbeat NI which is the thriving family support group forchildren in Northern Ireland.
Also, and by a complete coincidence, while investigating the excellent indoor market in Belfast, theWootton's (literally, as in "Oops, sorry!") bumped in to Margaret Curtin of the Irish (Eire) 22q groupwho happened to have travelled up from Cork! The event was huge fun for everyone and MaxAppeal is delighted to have spread its wings from mainland Great Britain to now have covered thewhole of the United Kingdom. The next NI gathering is warmly anticipated at the end of January 2013!
BARBEQUEAfter hot drinks and amazing home madecakes.. we started to prepare for another SplashCamp tradition, our Saturday evening BBQ.
We had to reorganise things and use thekitchen facilities as it continued to rain allevening. However, the weather didn’t dampenany one’s spirits and Simon and Paul Wootton,Max Appeal Trustee soon took over the cooking.
The children continued to get to know eachother and it didn’t take much persuading for anearly night when bedtime approached as theywere all very tired after an active but enjoyableday. More food…..and chocolate cake.
It was a slow start at breakfast on Sunday, with morechildren choosing the option of having a ‘lie in’.
Despite that everyone was soon ready for theirfinal session of water sports. One team
tried their hand at raft building andthe others opted for sailing. This
time the weather was much betterand we even saw the sun.There was enough wind acrossthe lake to fill the sails and thefun boats were soon speeding
across the water. After building asuccessful raft and paddling around
the lake some of our party enjoyed atrip on a speed boat and a few even jumpedinto the lake and swam ashore.
We finished up with a lovely lunch and then itwas time to pack up our things and tidy theCentre before heading home.
Everyone thoroughly enjoyed the weekend andI’m sure they had lots of stories to share withtheir family and friends. We hope it was positiveexperience for everyone who came along.
It was good to see all the lovely comments andmessages from both children and parents aboutthe weekend.
This was our fourth visit to South Cerney Outdoor Education in Gloucestershire for our Splash Camp weekend ofwater sports activities. Families arrived on Friday evening and everyone soon settled into tents, log cabins andcaravans, with a few families opting for the comfort of B&B’s or a local hotel. Everyone soon got togethermeeting up with new families or renewing old acquaintances. The children were soon fed and enjoying thefacilities and they were all extremely excited about the weekend ahead.
We were soon exploring our new surroundings and Simon pulled a local crayfish out of the lake…it was huge!It was safe though, as no BBQ was planned for the first night, otherwise it might have found itself on the menu!
Our volunteers, Fran, Caroline, Simon and Claire were kept busy in the kitchen, as it’s amazing the affectthe outdoors has on promoting a good appetite. It seemed as if there was a continuous supply of food being prepared throughout the weekend! I’m sure Fran and Caroline definitely felt it was like that!
MAKE A MEALWITH MAX APPEALThis year we were running another activity atthe same time and a group of young peoplewere taking part in a one day cookery school.
The idea was to plan their menu forthe day, budgeting and shopping atthe local Farmers Market and thencooking all the dishes and enjoyingthem together. A local cookeryschool, worked with the youngpeople for the day. They explainedthe benefits of healthy eating andpreparing your own food and also how toshop locally with a small budget. The youngpeople even practiced their maths skills as theyhandled the money needed to make the purchases.
New cookery skills and techniques weredemonstrated to the young people and theysoon realised how much fun it was to cook withfriends. We were all amazed at what was beingproduced and the high quality of the finisheddishes. Chloe’s dad, Martin managed to includehimself in all the’ tastings’ and was even invitedto share the meal at the end of day withoutdoing any of the cooking. We all thought hedeserved a special certificate!
TEAM MAXEveryone was up bright and early on Saturday,and after breakfast we were soon ready for aday of activities on the water. We were kittedout with wet suits, waterproofs, life jackets andsafety helmets. We divided ourselves into twoteams and enjoyed kayaking and sailing, withsome of the parents in support of the youngermembers of the group and those who neededthe additional help. Although the weather wasn’tgreat as yet more rain descended on us everyonegot fully involved in the activities on offer. Aftera short break for lunch it was back on the waterto try out some further skills. The children quicklylearnt how to use the funboats and kayaks andthey all amazed themselves. It‘s a great way toboost their confidence and have some fun.
INTERNATIONAL 22Q AWARENESS DAYThis event was again spectacularly well attended! Around 350 people went to five venues; Bristol, Chester,Scarborough Beach, Edinburgh and Whipsnade, raising awareness of 22q deletion conditions... on Sunday 22nd April... (of course!) even more people than last year and a great way to meetother families and have a good day out.
Special mention must be made to ApelElain for their generousdonation to support families attending the day. We are also verygrateful to Chris Ryan's company Ashgoal for their massivesupport at Whipsnade which has enabled the largest turn outin the UK at a single venue... possibly the world... Thanks forthe support of the local organisers for each of the venues:Nat Cook, Jayne Rostron, Martin Kennedy, SarahGoodyear, and Chris and Sarah Ryan.
OUTA
NDABOUT
EVENTS & MEETIN
GS
splash camp!
First family meeting inNorthern Ireland
A splashing weekend had by all!...
2222QQ AATT TTHHEE ZZOOOO
5
Max Appeal joined the International 22q Foundation,Children’s Hospital of Philadelphia, University of Toronto,Children’s Hospital of Wisconsin and The Ryan and JennyDempster Foundation in a campaign in response to a challengeby the US Secretary of Health’s Committee on HeritableDisorders and Newborn Screening that contended there is no evidence to support the approval ofan application to add 22q screening to the current federally mandated list of newborn screening studies.
The collaborating organisations discovered on the day that the Committee, prior to any publiccomments or proponent group presentation, had predetermined that the application to add 22qscreening be denied. The Committee cited the lack of pilot study evidence to support the proposal.However, following a convincing presentation (the whole group was pretty appaled by this foregoneconclusion so everyone pulled the stops out!) the Committee agreed to re-hear the proposal oncesuch pilot data is submitted.
This is represents a really significant milestone for 22q! IF this is adopted in the USA (as 02 saturations test for newborns already has), this will be a strong backing for Max Appeal toapproach the NHS NIPE committee.
Please get in touch with the International 22q Foundation (www.22q.org)if you would like to make a donation to supportthis piece of work; the pilot study is estimated to need in theregion of $500,000.
(NB: when dining out with Donna from CHOP, don’t believe her ifshe says "Hey, try an oyster shooter, you'll lov 'em!” This momentwas captured by a giggling Carol Cavana. Cheers, luv!)
Pictured above are: Michelle Breedlove-Sells, The Ryan and Jenny Dempster Foundation; CarolCavana, The International 22q11.2 Foundation; Anne Bassett, The University of Toronto; SheilaKambin, The International 22q11.2 Foundation; Aoy Mitchell, and John Routed of Children’sHospital of Wisconsin; Donna McDonald-McGinn, Children’s Hospital of Philadelphia; JulieWootton. Also present but not pictured was Stu Berger, also Children’s Hospital of Wisconsin.
What a bumpy ride this is! The standards thatconstitute a “safe and sustainable” paediatriccardiac surgical service were agreed by the cardiacsurgeons and cardiologists pretty unanimouslyat the beginning of this process. Currently weare awaiting the results of the IndependentReconfiguration Panel in February 2013.Feelings are, understandably running very highat some of the hospitals that may have to ceasesurgery. To find out more about this extremelyimportant issue visit: http://www.specialisedservices.nhs.uk/safe_sustainable/childrens-congenital-cardiac-servicesor just google “safe and sustainable”!
Living skills – always an issue. We’re working on
a programme of workshops for our young people
to attend. The first one was a runaway success,
see the article in this issue. See the article on
our latest Splash Camp. Get a copy of Michele
Hiseman’s ‘Reach for the
Stars’ booklet on
CV building and
thinking about
careers, from
Max Appeal.
E C H D OThe European CongenitalHeart Disease OrganisationJulie was invited to give a presentation on
22qdel in Istanbul at this international meeting.
Most of the heart organisations present were
not totally conversant with the complexities of the
condition and many felt that this was something
they should get a little more ‘up to speed’ with.
She was asked to focus on the learning difficulties
associated with 22q.
Hilary Joyce has an article published in the July
2012 copy of the NASEN magazine. NASEN
provides lots of information for SEN teachers
and support staff, so we are delighted that an
article written by Hilary Joyce about 22q Deletion
Syndrome was published in the July copy. Please
highlight the article to your school SENCO as it is
a good way to raise awareness of 22q.
Please see the link below to view the article and
other useful information.
www.nasen.org.uk/special-magazine-archive
Pulse Oximetry (oxygen saturations) screening
for newborns – NHS NIPE (newborn infant physical
examination) - Max Appeal strongly supports the
establishment of a pathway for cardiac screening,
including sats monitoring which is very good for
picking up breathing issues as well as cyanotic
(blue) heart defects, though other heart defects
might not show up. After many discussions,
studies and debates, Max Appeal is happy to get
strongly behind the call for O2 saturations to
be tested on every baby in the UK, this is now
a standard on more than half of the
states in USA. What seemed like a “no
brainer” to begin with, it seems is a
“no brainer” after all. It is incredibly
cheap, painless and non-invasive.
Get on with it! Sign the e-petition!
http://epetitions.direct.gov.uk/petitions
/37286.
Julie (chair for Children’s Heart Federation) spoke
at the House of Commons reception for the
Think Heart Campaign, she recounted a potted
version of Max’s life and that had he been tested
at birth then just maybe the catastrophic spiral
of events that began with severe oxygen depri-
vation in his first few hours of life could have
been avoided. Visit www.chfed.org.uk for more
information about Think HEART and the Pulse
Oximetry campaigns.
APPG - Julie also
attended the All Party
Parliamentary Group
meeting on congenital
heart disease organised
It's a busy old time here for MaxAppeal so I thought, we'd just give youall a little flavour of the types of thingswe’ve been up to on your behalf...
by a collaboration between Children’s Heart
Federation (of which Max Appeal is a member
organisation), British Heart Foundation, Little
Hearts Matter and Somerville Foundation, at
the House of Commons attended by many MPs
including Margot James who is MP for
Stourbridge and keen supporter of Max Appeal!
CHF also managed to get an Early Day Motion
Tabled! EDM 751: JOINED-UP CARE FOR
CONGENITAL HEART DISEASE - That this
House notes that congenital heart disease
is the most common birth defect,
affecting over 5,000 new-born
babies in the UK each year;
considers that congenital heart
disease requires equal recognition
with other long-term health
conditions and that patients deserve
joined-up care antenatally, at birth, in childhood
and throughout life in adulthood; further notes
that such services should be well managed, with
clear pathways of care and well developed
networks delivering safe and excellent care for
all patients in what is a very complex area of
medicine; and calls on the Government, the
NHS and the voluntary sector to work together
to deliver this world class system of support
and care.
Write to your local MP and tell them what’s
going on. This will help to raise awareness of
22q deletion at the highest level. Find your local
MP; search by name, constituency or post code!
http://findyourmp.parliament.uk/
PPUULLSSEE OOXXIIMMEETTRRYY SSCCRREEEENNIINNGG
Anne CHF’s CEO , Julie from Max Appeal, and Debbie and Jeanette from ECHDO
on a boat trip up the Bosphorus!
'TALKING POINT' ARTICLE ON 22QNATIONAL ASSOCIATION OFSPECIAL EDUCATION NEEDS
SAFE andSUSTAINABLE
LIVING SKILLS
M
AXAPPEAL.OR
G.U
K
FOR
MOR
EINFOVISIT
FOR
MOR
EINFOVISIT
M
AXAPPEAL.OR
G.U
K
CCADCCADMoving forwards with the monitoring of all
congenital cardiac surgical outcomes and pressing
for morbidity (illness) after operations to be
added, particularly neurological outcomes. Also
eminent people such as Sir Bruce Keogh have
called for individual surgeon’s results to be
made public, still a controversial move.
IMMUNODEFICIENCYPATIENT GROUP
With the closure of the PiA at the end of 2011,
there has come a call for a new group to cater
for patients needs, so we are involved in the initial
exchanges for this. There is an emerging group
and we’ll keep you informed.
The patient arm of the
British Cardiovascular Society,
trying to bring better care for
our kids and adults with congenital heart disease,
particularly looking at rehab programmes.
Julie is a trustee.
INFORMATION STANDARDThis is the government scheme to ensure that
information supplied by organisations is of the
highest quality, in terms of accessibility, presen-
tation, content and delivery. All information has
to go through a rigorous endorsement process
by relevant clinicians and representatives from
the intended recipient audience, whether that is
other clinicians and professionals, parents or
carers, or young people. We are working to
establishing a youth council in addition to its
parent panel and panel of experts.
Fundraising StandardMax Appeal is signed up to this voluntary scheme
for a charity to demonstrate its diligence and
integrity it its fundraising activities.
At Max Appeal we believe that the highest quality
behaviour, standards and delivery is vital to our
members and supporters.
You deserve nothing less!
7
HEART CAREPARTNERSHIP
UK
22Q NEW BORN SCREENING IN USAmore news
Max Appeal joined the International 22q Foundation,Children’s Hospital of Philadelphia, University of Toronto,Children’s Hospital of Wisconsin and The Ryan and JennyDempster Foundation in a campaign in response to a challengeby the US Secretary of Health’s Committee on HeritableDisorders and Newborn Screening that contended there is no evidence to support the approval ofan application to add 22q screening to the current federally mandated list of newborn screening studies.
The collaborating organisations discovered on the day that the Committee, prior to any publiccomments or proponent group presentation, had predetermined that the application to add 22qscreening be denied. The Committee cited the lack of pilot study evidence to support the proposal.However, following a convincing presentation (the whole group was pretty appaled by this foregoneconclusion so everyone pulled the stops out!) the Committee agreed to re-hear the proposal oncesuch pilot data is submitted.
This is represents a really significant milestone for 22q! IF this is adopted in the USA (as 02 saturations test for newborns already has), this will be a strong backing for Max Appeal toapproach the NHS NIPE committee.
Please get in touch with the International 22q Foundation (www.22q.org)if you would like to make a donation to supportthis piece of work; the pilot study is estimated to need in theregion of $500,000.
(NB: when dining out with Donna from CHOP, don’t believe her ifshe says "Hey, try an oyster shooter, you'll lov 'em!” This momentwas captured by a giggling Carol Cavana. Cheers, luv!)
Pictured above are: Michelle Breedlove-Sells, The Ryan and Jenny Dempster Foundation; CarolCavana, The International 22q11.2 Foundation; Anne Bassett, The University of Toronto; SheilaKambin, The International 22q11.2 Foundation; Aoy Mitchell, and John Routed of Children’sHospital of Wisconsin; Donna McDonald-McGinn, Children’s Hospital of Philadelphia; JulieWootton. Also present but not pictured was Stu Berger, also Children’s Hospital of Wisconsin.
What a bumpy ride this is! The standards thatconstitute a “safe and sustainable” paediatriccardiac surgical service were agreed by the cardiacsurgeons and cardiologists pretty unanimouslyat the beginning of this process. Currently weare awaiting the results of the IndependentReconfiguration Panel in February 2013.Feelings are, understandably running very highat some of the hospitals that may have to ceasesurgery. To find out more about this extremelyimportant issue visit: http://www.specialisedservices.nhs.uk/safe_sustainable/childrens-congenital-cardiac-servicesor just google “safe and sustainable”!
Living skills – always an issue. We’re working on
a programme of workshops for our young people
to attend. The first one was a runaway success,
see the article in this issue. See the article on
our latest Splash Camp. Get a copy of Michele
Hiseman’s ‘Reach for the
Stars’ booklet on
CV building and
thinking about
careers, from
Max Appeal.
E C H D OThe European CongenitalHeart Disease OrganisationJulie was invited to give a presentation on
22qdel in Istanbul at this international meeting.
Most of the heart organisations present were
not totally conversant with the complexities of the
condition and many felt that this was something
they should get a little more ‘up to speed’ with.
She was asked to focus on the learning difficulties
associated with 22q.
Hilary Joyce has an article published in the July
2012 copy of the NASEN magazine. NASEN
provides lots of information for SEN teachers
and support staff, so we are delighted that an
article written by Hilary Joyce about 22q Deletion
Syndrome was published in the July copy. Please
highlight the article to your school SENCO as it is
a good way to raise awareness of 22q.
Please see the link below to view the article and
other useful information.
www.nasen.org.uk/special-magazine-archive
Pulse Oximetry (oxygen saturations) screening
for newborns – NHS NIPE (newborn infant physical
examination) - Max Appeal strongly supports the
establishment of a pathway for cardiac screening,
including sats monitoring which is very good for
picking up breathing issues as well as cyanotic
(blue) heart defects, though other heart defects
might not show up. After many discussions,
studies and debates, Max Appeal is happy to get
strongly behind the call for O2 saturations to
be tested on every baby in the UK, this is now
a standard on more than half of the
states in USA. What seemed like a “no
brainer” to begin with, it seems is a
“no brainer” after all. It is incredibly
cheap, painless and non-invasive.
Get on with it! Sign the e-petition!
http://epetitions.direct.gov.uk/petitions
/37286.
Julie (chair for Children’s Heart Federation) spoke
at the House of Commons reception for the
Think Heart Campaign, she recounted a potted
version of Max’s life and that had he been tested
at birth then just maybe the catastrophic spiral
of events that began with severe oxygen depri-
vation in his first few hours of life could have
been avoided. Visit www.chfed.org.uk for more
information about Think HEART and the Pulse
Oximetry campaigns.
APPG - Julie also
attended the All Party
Parliamentary Group
meeting on congenital
heart disease organised
It's a busy old time here for MaxAppeal so I thought, we'd just give youall a little flavour of the types of thingswe’ve been up to on your behalf...
by a collaboration between Children’s Heart
Federation (of which Max Appeal is a member
organisation), British Heart Foundation, Little
Hearts Matter and Somerville Foundation, at
the House of Commons attended by many MPs
including Margot James who is MP for
Stourbridge and keen supporter of Max Appeal!
CHF also managed to get an Early Day Motion
Tabled! EDM 751: JOINED-UP CARE FOR
CONGENITAL HEART DISEASE - That this
House notes that congenital heart disease
is the most common birth defect,
affecting over 5,000 new-born
babies in the UK each year;
considers that congenital heart
disease requires equal recognition
with other long-term health
conditions and that patients deserve
joined-up care antenatally, at birth, in childhood
and throughout life in adulthood; further notes
that such services should be well managed, with
clear pathways of care and well developed
networks delivering safe and excellent care for
all patients in what is a very complex area of
medicine; and calls on the Government, the
NHS and the voluntary sector to work together
to deliver this world class system of support
and care.
Write to your local MP and tell them what’s
going on. This will help to raise awareness of
22q deletion at the highest level. Find your local
MP; search by name, constituency or post code!
http://findyourmp.parliament.uk/
PPUULLSSEE OOXXIIMMEETTRRYY SSCCRREEEENNIINNGG
Anne CHF’s CEO , Julie from Max Appeal, and Debbie and Jeanette from ECHDO
on a boat trip up the Bosphorus!
'TALKING POINT' ARTICLE ON 22QNATIONAL ASSOCIATION OFSPECIAL EDUCATION NEEDS
SAFE andSUSTAINABLE
LIVING SKILLS
M
AXAPPEAL.OR
G.U
K
FOR
MOR
EINFOVISIT
FOR
MOR
EINFOVISIT
M
AXAPPEAL.OR
G.U
K
CCADCCADMoving forwards with the monitoring of all
congenital cardiac surgical outcomes and pressing
for morbidity (illness) after operations to be
added, particularly neurological outcomes. Also
eminent people such as Sir Bruce Keogh have
called for individual surgeon’s results to be
made public, still a controversial move.
IMMUNODEFICIENCYPATIENT GROUP
With the closure of the PiA at the end of 2011,
there has come a call for a new group to cater
for patients needs, so we are involved in the initial
exchanges for this. There is an emerging group
and we’ll keep you informed.
The patient arm of the
British Cardiovascular Society,
trying to bring better care for
our kids and adults with congenital heart disease,
particularly looking at rehab programmes.
Julie is a trustee.
INFORMATION STANDARDThis is the government scheme to ensure that
information supplied by organisations is of the
highest quality, in terms of accessibility, presen-
tation, content and delivery. All information has
to go through a rigorous endorsement process
by relevant clinicians and representatives from
the intended recipient audience, whether that is
other clinicians and professionals, parents or
carers, or young people. We are working to
establishing a youth council in addition to its
parent panel and panel of experts.
Fundraising StandardMax Appeal is signed up to this voluntary scheme
for a charity to demonstrate its diligence and
integrity it its fundraising activities.
At Max Appeal we believe that the highest quality
behaviour, standards and delivery is vital to our
members and supporters.
You deserve nothing less!
7
HEART CAREPARTNERSHIP
UK
22Q NEW BORN SCREENING IN USAmore news
fun
The year started with the sad news of the sudden death of Max Lechner
aged 11, on 29th December 2011 following an MRSA infection in his heart.
There has been an astounding number of tributes pouring in to us all year,
and all without exception say the same thing: this special person brought
sunlight and joy to everyone he met.
We first met Clare and Ludwig at a Max Appeal conference more than 10 years
ago and have always felt a very strong bond with them, and their wonderful
generosity when Paul and my dad stayed with them is legendary in our house!
Writes Clare, Max’s Mumma: “I hope that all those who knew him will never
forget his bubbly character and will stop once in a while in their busy lives and
just take a moment to remember the way in which he lived his life, making the
most of every single day with such a happy go lucky attitude.”
Max left a lasting impression with everyone he met and brought joy to so many people in and around Aberdeen, this has been exemplified by
the donations received from so many people who knew Max and his family, parents Clare and Ludwig and brothers Daniel and Christian.
Almost £3,000 has been donated by the following organisations and individuals; Maritime Assurance & Consulting £300.00, CultsAcademy £400.00, where Christian and Daniel attend the school, Mr R McCraw £50.00, Cults Primary School £128.13, Mark Swan,Steaphen Connell and Morgan Macleod – Bell, who made and sold cakes raising £50.00
Molly Forsyth £300.00, Molly is aged 13 and the sister of Dylan one of Max’s best friends, she had a huge party and invited the whole of her
year to come along and instead of presents asked for money. She would always receive one of Max’s hugs on his way back from school!
Aberdeen King’s Camps donated £550.00, many of the children at the camp went to school with Max and took part in a variety of fundraising
events such as raffles, soak the coach and a talent show.
The 47th Culter Boys Brigade organised a sports day, where they also had a raffle and sold homebaked cakes raising £221.41
Most recently Culter Boys Club 1997 donated £300.00, Max was the team mascot, his brother Christian is a member of the team and the whole
team were present at Max’s funeral, further anonymous donations and corporate match funding took the total received to £700.00.
Craig Adams. Craig and his family have been staunch supporters of Max Appeal for many years
with hundreds of pounds donations from carnival and other events. Look at these Daleks, hand
crafted by his uncle, Craig and his family attended a Sci-Fi meeting in Peterborough and raised
money for Max Appeal and another £100.00 at the Carnival during the summer then a further
£200 from Nuneaton Council when they switched on the Christmas lights… and then here he is
again snapped with Max Appeal celebrity patron Tony Head
last year! Craig has also worked up a song demo for Max
Appeal and is always raising awareness through his work
with Castlemead Radio and his Sci Fi enthusiast contacts,
including some actors from tv programmes like Dr Who.
Thank you Craig. What will they think of for 2013!
Max Lechner
and some huge thank yous!
Craig and the Daleks
Thanks to Mark Mitchell and his CrocodileToy Shop in Cirencester, whose collection
box raised £102.36, to Mark Bradbury and
his new employer Thornton Firkin who
celebrated the opening of their new offices in
Birmingham with a fundraiser for Max Appeal
which generated £222.00 and to longstanding
supporter Alan Hollick of Copywrite in
Shrewsbury for his donation of £100.00.
Donations of £228.00 and £64.64 respectively
were received from the White EnsignGillingham Lodge and £64.64 from the
Green Room Lodge.
Back in May, Carlene Gillen, mom to Molly,
took part in the Belfast Marathon with family
and friends. On what was a dreadful day’s
weather for such an event, they battled against
the elements, resplendent in their orange Max
Appeal running shirts and completed the course
raising almost £1,300.00.They celebrated,
despite the weather with a BBQ after the run,
hardy folk from Northern Ireland, whom we were
able to meet up with at our recently held family
day at the W5 centre at the Titanic Quarter.
At the end of April, Max Appeal embarked on
the second 22q at the Zoo event, families met
at Whipsnade, Chester, Flamingoland, Edinburgh
and Bristol. An enjoyable day was had by all and
made possible by the overwhelmingly generous
financial support from Apel Elain £1,000 and
Christopher Ryan’s company Ashgoal £1,100.
Thanks must also go to Chris and Sarah Ryan,Sarah Goodyear, Martin Kennedy,Jayne Rostron and Claire Hennesseywho organised the families at each of the venues.
Libby Searle and Caroline Dimond completed the Great South
Run half marathon in October raising £860.00 Shelly Chapman took
part in the North Lincs half marathon in April raising £250.00. Stephanie Carlincompeted in the Glasgow Womens 10k in May, raising £807.50 David McConnell took part in the Great
Manchester Run in May raising over £700.00. Sasha Gallagher was our most recent marathon runner, completing the
Mablethorpe Marathon and raising £307.75 Mike Steel completed the Manchester Marathon in
April raising £520.00, Alison Anderson completed the Edinburgh Marathon raising £2,552.50,
Alison worked at the school that Max Lechner attended. Alison also took part in the Great North
Run and has signed up for the London Marathon in 2013.Once again Team Max Appeal took part in the Great North Run and Great Birmingham Run, 21 took part around the roads ofTyneside and another 10 raced around the country’s second city, to date raising a fantastic £14,000. Thank you to all of theirgenerous supporters, including corporate match funding from Legal & General and Amec Group, together with Martin Silvesterand Rachael Towers at EC Harris for their hospitality at their Centenary Square offices in Birmingham.
Most recent donations of £250.00 from
Katherine Reid towards the cost of the 2013 calendars
and Simon Tucker and his company STL Planningand Design Solutions £500.00 towards the cost of the 2013 wall-planners Margaret
Miller organised a sponsored walk in July and raised a stunning £1,039.000. Michelle Hopkinsorganised two Charity Ladies Nights raising £1,367.50 Our runners have come up trumps once
again in 2012, taking part in various events of varying distances around the country.
AND THANKS GO TO...
AND THANKS GO TO...
9
fundraising22001122 AAcchhiieevveemmeennttss aanndd EEvveennttss
Recognition for some of our corporate sponsors, supporters and grant makers and trust donations that make the work
of Max Appeal possible.The last year has proved to be an extremely successful one for Max Appeal, despite a gloomy
economic outlook and reports from CAF and NCVO that charitable donations fell by 20% in 2011/ 2012. We bucked
the trend with our total income for our financial year end of 31st August 2012 increasing from £44,000 to circa
£62,000 all due to the fantastic efforts by our member families and their supporters via a range of events around the
country, in no particular order our grateful thanks go to...
fun
The year started with the sad news of the sudden death of Max Lechner
aged 11, on 29th December 2011 following an MRSA infection in his heart.
There has been an astounding number of tributes pouring in to us all year,
and all without exception say the same thing: this special person brought
sunlight and joy to everyone he met.
We first met Clare and Ludwig at a Max Appeal conference more than 10 years
ago and have always felt a very strong bond with them, and their wonderful
generosity when Paul and my dad stayed with them is legendary in our house!
Writes Clare, Max’s Mumma: “I hope that all those who knew him will never
forget his bubbly character and will stop once in a while in their busy lives and
just take a moment to remember the way in which he lived his life, making the
most of every single day with such a happy go lucky attitude.”
Max left a lasting impression with everyone he met and brought joy to so many people in and around Aberdeen, this has been exemplified by
the donations received from so many people who knew Max and his family, parents Clare and Ludwig and brothers Daniel and Christian.
Almost £3,000 has been donated by the following organisations and individuals; Maritime Assurance & Consulting £300.00, CultsAcademy £400.00, where Christian and Daniel attend the school, Mr R McCraw £50.00, Cults Primary School £128.13, Mark Swan,Steaphen Connell and Morgan Macleod – Bell, who made and sold cakes raising £50.00
Molly Forsyth £300.00, Molly is aged 13 and the sister of Dylan one of Max’s best friends, she had a huge party and invited the whole of her
year to come along and instead of presents asked for money. She would always receive one of Max’s hugs on his way back from school!
Aberdeen King’s Camps donated £550.00, many of the children at the camp went to school with Max and took part in a variety of fundraising
events such as raffles, soak the coach and a talent show.
The 47th Culter Boys Brigade organised a sports day, where they also had a raffle and sold homebaked cakes raising £221.41
Most recently Culter Boys Club 1997 donated £300.00, Max was the team mascot, his brother Christian is a member of the team and the whole
team were present at Max’s funeral, further anonymous donations and corporate match funding took the total received to £700.00.
Craig Adams. Craig and his family have been staunch supporters of Max Appeal for many years
with hundreds of pounds donations from carnival and other events. Look at these Daleks, hand
crafted by his uncle, Craig and his family attended a Sci-Fi meeting in Peterborough and raised
money for Max Appeal and another £100.00 at the Carnival during the summer then a further
£200 from Nuneaton Council when they switched on the Christmas lights… and then here he is
again snapped with Max Appeal celebrity patron Tony Head
last year! Craig has also worked up a song demo for Max
Appeal and is always raising awareness through his work
with Castlemead Radio and his Sci Fi enthusiast contacts,
including some actors from tv programmes like Dr Who.
Thank you Craig. What will they think of for 2013!
Max Lechner
and some huge thank yous!
Craig and the Daleks
Thanks to Mark Mitchell and his CrocodileToy Shop in Cirencester, whose collection
box raised £102.36, to Mark Bradbury and
his new employer Thornton Firkin who
celebrated the opening of their new offices in
Birmingham with a fundraiser for Max Appeal
which generated £222.00 and to longstanding
supporter Alan Hollick of Copywrite in
Shrewsbury for his donation of £100.00.
Donations of £228.00 and £64.64 respectively
were received from the White EnsignGillingham Lodge and £64.64 from the
Green Room Lodge.
Back in May, Carlene Gillen, mom to Molly,
took part in the Belfast Marathon with family
and friends. On what was a dreadful day’s
weather for such an event, they battled against
the elements, resplendent in their orange Max
Appeal running shirts and completed the course
raising almost £1,300.00.They celebrated,
despite the weather with a BBQ after the run,
hardy folk from Northern Ireland, whom we were
able to meet up with at our recently held family
day at the W5 centre at the Titanic Quarter.
At the end of April, Max Appeal embarked on
the second 22q at the Zoo event, families met
at Whipsnade, Chester, Flamingoland, Edinburgh
and Bristol. An enjoyable day was had by all and
made possible by the overwhelmingly generous
financial support from Apel Elain £1,000 and
Christopher Ryan’s company Ashgoal £1,100.
Thanks must also go to Chris and Sarah Ryan,Sarah Goodyear, Martin Kennedy,Jayne Rostron and Claire Hennesseywho organised the families at each of the venues.
Libby Searle and Caroline Dimond completed the Great South
Run half marathon in October raising £860.00 Shelly Chapman took
part in the North Lincs half marathon in April raising £250.00. Stephanie Carlincompeted in the Glasgow Womens 10k in May, raising £807.50 David McConnell took part in the Great
Manchester Run in May raising over £700.00. Sasha Gallagher was our most recent marathon runner, completing the
Mablethorpe Marathon and raising £307.75 Mike Steel completed the Manchester Marathon in
April raising £520.00, Alison Anderson completed the Edinburgh Marathon raising £2,552.50,
Alison worked at the school that Max Lechner attended. Alison also took part in the Great North
Run and has signed up for the London Marathon in 2013.Once again Team Max Appeal took part in the Great North Run and Great Birmingham Run, 21 took part around the roads ofTyneside and another 10 raced around the country’s second city, to date raising a fantastic £14,000. Thank you to all of theirgenerous supporters, including corporate match funding from Legal & General and Amec Group, together with Martin Silvesterand Rachael Towers at EC Harris for their hospitality at their Centenary Square offices in Birmingham.
Most recent donations of £250.00 from
Katherine Reid towards the cost of the 2013 calendars
and Simon Tucker and his company STL Planningand Design Solutions £500.00 towards the cost of the 2013 wall-planners Margaret
Miller organised a sponsored walk in July and raised a stunning £1,039.000. Michelle Hopkinsorganised two Charity Ladies Nights raising £1,367.50 Our runners have come up trumps once
again in 2012, taking part in various events of varying distances around the country.
AND THANKS GO TO...
AND THANKS GO TO...
9
fundraising22001122 AAcchhiieevveemmeennttss aanndd EEvveennttss
Recognition for some of our corporate sponsors, supporters and grant makers and trust donations that make the work
of Max Appeal possible.The last year has proved to be an extremely successful one for Max Appeal, despite a gloomy
economic outlook and reports from CAF and NCVO that charitable donations fell by 20% in 2011/ 2012. We bucked
the trend with our total income for our financial year end of 31st August 2012 increasing from £44,000 to circa
£62,000 all due to the fantastic efforts by our member families and their supporters via a range of events around the
country, in no particular order our grateful thanks go to...
MAX APPEAL ON THE RUN!
Arrangements went very smoothly this year!
Dropped all the stuff off at the tented village in
South Shields to meet the runners at the end.
Had a lovely dinner at the Italian just round the
corner from the hotel under the Tyne Bridge.
Set off in good time in the morning and met up
with a few runners at Haymarket for the obligatory
'before' picture! All brave and
optimistic, or nervous and putting
on a brave face. Martin showed
us his new tattoo, which was lovely...
but didn't take a photo of it sadly!
Also there was the obligatory last
Martin Silvester has signed up to take part in
the Berlin Marathon for Max Appeal next year!
Here is his post race quote “Last Sunday I did what I set out to do some 20 weeks ago. I ran the London Marathon in
under 4 hours and I raised a lot of money for a very worthwhile charity. The sense of achievement was truly incredible. I don't think I've done
anything like that before. Personal achievement has always ranked pretty high in everything I do, but the combination of the two is something special.”
Our final success of the yearwas the announcement thatMax Appeal had secured agrant of £12,000 fromGenetic Disorders UK, the nationalcharity that organises Jeans for Genes Day.
Julie Wootton Chair of Trustees for Max Appealsaid: “This grant is wonderful news. It means wecan progress with our project to roll out ourConsensus Document that provides information formedics and families on the diagnosis and life-long care pathway.
The other big thing about Jeans for Genes is theawareness in schools and work places about MaxAppeal, which presents us with a wonderful opportunityto raise awareness of 22q deletion.”
Caroline Harding, the CEO of Genetic DisordersUK said: “We are delighted to be helping Max Appealsupport children with the conditions caused by 22qdeletion. Our grant programme is open to all UKsupport groups and registered charities who work toimprove the lives of children and families affected bygenetic disorders. In 2012, 24 charities will benefit fromthe funds raised by the public on Jeans for Genes Day.”
Thanks also go to our trustees; Hilary, Kumar,Paul, Julie and Rachel, and we are very proud towelcome Sarah Goodyear to the board oftrustees. Also thanks to Claire who works wayabove and beyond… and of course our heartyband of volunteers. Without all of these peopleit would not be possible to achieve so much forsuch a small charity.
AREN’T WE A BIT TOO OLD TO THROWOURSELVES OFF A HIGH BUILDING?When we were first contacted by Claire Hennessey
to help her to raise money for De George
Syndrome Children in the form of “The Max
Appeal”, we thought no more about it. After all
it was all some way off in the future! How difficult
could it be to abseil off a building anyway?
But as the day drew near, the reality of what we
had done grew ever stronger, especially driving
up to the old Bonded Warehouse overlooking the
Cumberland Basin! Didn’t realise it was as high
as that – or as steep!!!!
We were greeted at the back of the warehouse by Claire and
reassured that it was all going to be straight forward – after all,
her own daughter Alicia had already done it twice!!! That only
made us feel worse.
Both Chris and I were “kitted up” with sit harnesses and helmets
and dispatched into the lift to the top of the building – well not quite to the top! There was the
climb up the internal ladder to contemplate first and then out on to the roof! What magnificent
views all round, from the Clifton Suspension Bridge, Cabot Tower, St Mary Redcliffe – and the scaffolding
reaching up even higher and disappearing over the side of the building!
“Your turn now!” said a voice from on top of the tower. A safety line was fastened and I took the
slow journey to the top of the tower, before being clipped onto the abseil line. “Turn round and
move slowly to the edge – but don’t look down!”
There was no chance of that happening! I must have looked like a big penguin slowly shuffling backwards
– the rope became tight and before I knew it I was sliding down the rope to be greeted by cheers
from the watching gallery across the road in Ashton Park. I watched from the safety of terra firma
as Chris duplicated my walk to the edge of the building. Within what seemed like seconds he too
was at the bottom, being congratulated by all around.
For me, this was the first time that I had completed
an abseil in some 35 years – for Chris, this was
his first ever abseil, a superb achievement!
Having completed one abseil, still full of adrenaline,
we both went back up to do it all again!!! Must
have been mad? However, the real achievement
was in raising nearly £500 for the Max Appeal
Thank you to all in Park Street for sponsoring us
and helping us to achieve this sum.
And now for something completely different...Jemima Stubbs and her gang, Abi, Hannah, Charlotte,Siobhan and Josh aka the Max Appeal Warriors took part
in a military style 5k assault course called the Majors Challenge
raised almost £1,000. The weather suited the event as you
will see from the photos!
MMAARRAATTHHOONN MMAARRTTIINN
minute pinning on of race numbers... mind what
you're doing with that safety pin.. sometimes
they're not very safe at all!
Then the Max Appeal support team moved off
to the Metro station with supplies of sandwiches
and drinks... gosh it's tough going on a crowded
metro all the way over to South Shields... on the
other hand we could have been running it...
Finally our most stunning fundraising effort of
the year goes to Martin Silvester of EC Harris,
Ed Coppinger of Tradeteam DHL and Mark
Bradbury formerly EC Harris and now
Thornton Firkin, who signed up for the London
Marathon back in April.
We set them a fundraising target of £1,850
each and they went large,
very large and raised in excess of
£16,000 between them an
astonishing effort, this is our
largest single event fundraising
donation to date.
A variety of fundraising events were undertaken,
culminating in a quiz night at the Metro Bar and
Grill in Birmingham, which included a raffle,
silent and charity auctions, with immense support
from the Midland property sector, £12,000 was
raised on the night. The team of Max Appeal
trustees with a little help from Mark Bradbury
and Dale Bramford of Barclays won the quiz!
All three guys put in the hard yards of training,
Ed for his part missed 5 weeks through injury
but was first across the line in 3 hours 48,
Martin not far behind in 3 hours 56, with Mark
at 4 hours 33. They all hit their respective walls
but battled through, spurred on by supporters
on the route and in the
knowledge of what
a difference their
contribution would
make to a relatively
small charity like
Max Appeal.
MAX APPEAL ON THE RUN!
OUR THANKS TO EACH AND EVERY ONE OF YOU!
M
AXAPPEAL.OR
G.U
K
FOR
MOR
EINFOVISIT
M
AXAPPEAL.OR
G.U
K
11
Thanks to Michelle Breedlove-Sellsand the Dempster Foundation for the generous donation of $2,000.00 towards theongoing work of Max Appeal.
andmore...
WE HAVE GUARANTEED CHARITY PLACES AVAILABLE FORVARIOUS RUNNING EVENTS...BUT THEY’RE GOING FAST!
If you’d like to run on behalf of Max Appeal, contact: [email protected]
AND FINALLY...
If you’d like to challenge yourself and help us raise money for Max Appeal please let us know! Contact ccllaaiirree@@mmaaxxaappppeeaall..oorrgg..uukk
and we will help make your challenge come true!
MAX APPEAL ON THE RUN!
Arrangements went very smoothly this year!
Dropped all the stuff off at the tented village in
South Shields to meet the runners at the end.
Had a lovely dinner at the Italian just round the
corner from the hotel under the Tyne Bridge.
Set off in good time in the morning and met up
with a few runners at Haymarket for the obligatory
'before' picture! All brave and
optimistic, or nervous and putting
on a brave face. Martin showed
us his new tattoo, which was lovely...
but didn't take a photo of it sadly!
Also there was the obligatory last
Martin Silvester has signed up to take part in
the Berlin Marathon for Max Appeal next year!
Here is his post race quote “Last Sunday I did what I set out to do some 20 weeks ago. I ran the London Marathon in
under 4 hours and I raised a lot of money for a very worthwhile charity. The sense of achievement was truly incredible. I don't think I've done
anything like that before. Personal achievement has always ranked pretty high in everything I do, but the combination of the two is something special.”
Our final success of the yearwas the announcement thatMax Appeal had secured agrant of £12,000 fromGenetic Disorders UK, the nationalcharity that organises Jeans for Genes Day.
Julie Wootton Chair of Trustees for Max Appealsaid: “This grant is wonderful news. It means wecan progress with our project to roll out ourConsensus Document that provides information formedics and families on the diagnosis and life-long care pathway.
The other big thing about Jeans for Genes is theawareness in schools and work places about MaxAppeal, which presents us with a wonderful opportunityto raise awareness of 22q deletion.”
Caroline Harding, the CEO of Genetic DisordersUK said: “We are delighted to be helping Max Appealsupport children with the conditions caused by 22qdeletion. Our grant programme is open to all UKsupport groups and registered charities who work toimprove the lives of children and families affected bygenetic disorders. In 2012, 24 charities will benefit fromthe funds raised by the public on Jeans for Genes Day.”
Thanks also go to our trustees; Hilary, Kumar,Paul, Julie and Rachel, and we are very proud towelcome Sarah Goodyear to the board oftrustees. Also thanks to Claire who works wayabove and beyond… and of course our heartyband of volunteers. Without all of these peopleit would not be possible to achieve so much forsuch a small charity.
AREN’T WE A BIT TOO OLD TO THROWOURSELVES OFF A HIGH BUILDING?When we were first contacted by Claire Hennessey
to help her to raise money for De George
Syndrome Children in the form of “The Max
Appeal”, we thought no more about it. After all
it was all some way off in the future! How difficult
could it be to abseil off a building anyway?
But as the day drew near, the reality of what we
had done grew ever stronger, especially driving
up to the old Bonded Warehouse overlooking the
Cumberland Basin! Didn’t realise it was as high
as that – or as steep!!!!
We were greeted at the back of the warehouse by Claire and
reassured that it was all going to be straight forward – after all,
her own daughter Alicia had already done it twice!!! That only
made us feel worse.
Both Chris and I were “kitted up” with sit harnesses and helmets
and dispatched into the lift to the top of the building – well not quite to the top! There was the
climb up the internal ladder to contemplate first and then out on to the roof! What magnificent
views all round, from the Clifton Suspension Bridge, Cabot Tower, St Mary Redcliffe – and the scaffolding
reaching up even higher and disappearing over the side of the building!
“Your turn now!” said a voice from on top of the tower. A safety line was fastened and I took the
slow journey to the top of the tower, before being clipped onto the abseil line. “Turn round and
move slowly to the edge – but don’t look down!”
There was no chance of that happening! I must have looked like a big penguin slowly shuffling backwards
– the rope became tight and before I knew it I was sliding down the rope to be greeted by cheers
from the watching gallery across the road in Ashton Park. I watched from the safety of terra firma
as Chris duplicated my walk to the edge of the building. Within what seemed like seconds he too
was at the bottom, being congratulated by all around.
For me, this was the first time that I had completed
an abseil in some 35 years – for Chris, this was
his first ever abseil, a superb achievement!
Having completed one abseil, still full of adrenaline,
we both went back up to do it all again!!! Must
have been mad? However, the real achievement
was in raising nearly £500 for the Max Appeal
Thank you to all in Park Street for sponsoring us
and helping us to achieve this sum.
And now for something completely different...Jemima Stubbs and her gang, Abi, Hannah, Charlotte,Siobhan and Josh aka the Max Appeal Warriors took part
in a military style 5k assault course called the Majors Challenge
raised almost £1,000. The weather suited the event as you
will see from the photos!
MMAARRAATTHHOONN MMAARRTTIINN
minute pinning on of race numbers... mind what
you're doing with that safety pin.. sometimes
they're not very safe at all!
Then the Max Appeal support team moved off
to the Metro station with supplies of sandwiches
and drinks... gosh it's tough going on a crowded
metro all the way over to South Shields... on the
other hand we could have been running it...
Finally our most stunning fundraising effort of
the year goes to Martin Silvester of EC Harris,
Ed Coppinger of Tradeteam DHL and Mark
Bradbury formerly EC Harris and now
Thornton Firkin, who signed up for the London
Marathon back in April.
We set them a fundraising target of £1,850
each and they went large,
very large and raised in excess of
£16,000 between them an
astonishing effort, this is our
largest single event fundraising
donation to date.
A variety of fundraising events were undertaken,
culminating in a quiz night at the Metro Bar and
Grill in Birmingham, which included a raffle,
silent and charity auctions, with immense support
from the Midland property sector, £12,000 was
raised on the night. The team of Max Appeal
trustees with a little help from Mark Bradbury
and Dale Bramford of Barclays won the quiz!
All three guys put in the hard yards of training,
Ed for his part missed 5 weeks through injury
but was first across the line in 3 hours 48,
Martin not far behind in 3 hours 56, with Mark
at 4 hours 33. They all hit their respective walls
but battled through, spurred on by supporters
on the route and in the
knowledge of what
a difference their
contribution would
make to a relatively
small charity like
Max Appeal.
MAX APPEAL ON THE RUN!
OUR THANKS TO EACH AND EVERY ONE OF YOU!
M
AXAPPEAL.OR
G.U
K
FOR
MOR
EINFOVISIT
M
AXAPPEAL.OR
G.U
K
11
Thanks to Michelle Breedlove-Sellsand the Dempster Foundation for the generous donation of $2,000.00 towards theongoing work of Max Appeal.
andmore...
WE HAVE GUARANTEED CHARITY PLACES AVAILABLE FORVARIOUS RUNNING EVENTS...BUT THEY’RE GOING FAST!
If you’d like to run on behalf of Max Appeal, contact: [email protected]
AND FINALLY...
If you’d like to challenge yourself and help us raise money for Max Appeal please let us know! Contact ccllaaiirree@@mmaaxxaappppeeaall..oorrgg..uukk
and we will help make your challenge come true!
Consensus Document Complete!International Conference in Florida
Splash Camp 2012New Born Screening in USA
Fundraising Roundup
iinn tthhiiss iissssuuee......
news and views from
DECEMBER 2012IS PRODUCED BY MMAAXX AAPPPPEEAALL15 MERIDEN AVENUE, STOURBRIDGE, WEST MIDLANDS, DY8 4QN
[email protected]++ 44 44 (( 00 )) 11 33 88 44 88 22 11 22 22 77
This is what it should
pretty well look like
on your computer:
You won’t have seen
the database that
sits behind it but
that is the workhorse
for Max Appeal and will help us communicate
with our members and collaborate with medical
researchers. There are still more developments
in the pipeline...watch this cyberspace!!
CHECK OUT THEMAX APPEALQR CODE!
That is a quick response code, matrix barcode
or two dimensional code…well whatever
they’re called we’ve got one, and your
Smartphone will take you right to the Max
Appeal web site… provided you’ve got the app!
If not - download a QR reader for free.
(Ed. Oh dear, here we go! Technology!)
Everyone likes a challenge and it's even better when you know you are supporting a good cause
like Max Appeal. So if it's trekking in Peru, cycling from London to Paris, or for any exciting overseas
or Uk expeditions we can work together with our challenge partner to help you find the perfect
challenge for you. What ever you like to do contact [email protected] and we will help you
make your challenge dream come true!
Here's an idea from David and Mark. They are taking part in the Crumball Rally in June 2013.
Two fundraisers from Derby are embarking on a 2,000 mile journey in a banger to raise money
for charity. David Reeves (24) and Mark Sandercock (39), from Sinfin, will be taking part in a once
in a lifetime event which will see them drive along some of the locations used in the original The
Italian Job film. The pair will be buying a car worth less than £500 to take part in the Crumball Rally
in June 2013 to raise money for The Max Appeal.
David said “The Max Appeal have done a lot to support my niece, Laura (13), and the family for a number
of years, and this is our way of saying thank you for their great work. Laura was first diagnosed with
22q11 when she was four years old after years of battling with the NHS. Her mother, Lisa, was a young
mum with her first child and was often labelled as a neurotic mother. When Laura was eventually diagnosed
the work to support her health could start.”
Lisa (Laura’s Mum) said “Laura had to have two operations at a young age, and has a minor heart
defect which we have to keep an eye on. The biggest challenge, by far, is supporting Laura’s social
interaction and confidence, which Max Appeal have been influential in.”
David added “The whole trip is self-funded, so every penny that’s donated will go to the Max Appeal.”
If you’d like to sponsor David and Mark, or buy advertising space on the car, please visit
www.facebook.com/crumballrallyformaxappeal
set yourself a challenge!
@MaxAppealUK
Email us for more details!
HHAAVVEEYYOOUU SSEEEENNTTHHEE NNEEWW
WWEEBB SSIITTEE??
HHAAVVEEYYOOUU SSEEEENNTTHHEE NNEEWW
WWEEBB SSIITTEE??
STOP PRESS!
If you’d like to challenge yourself and help us raise money for Max Appeal please let us know
!
Contact ccllaaiirree@@mmaaxxaappppeeaall..oorrgg..uukk and we’ll help make your challenge come true!
