THE GRACE KELLY LADYBIRD TRUST ANNUAL REVIEW 2016 / …

Grace Kelly Ladybird Trust Review 2016/ 2017

Registered charity number 1167783

www.gracekellyladybird.co.uk

THE GRACE KELLY LADYBIRD TRUST

ANNUAL REVIEW 2016 / 2017

Because the children of today all deserve a

tomorrow.




About us

The Grace Kelly Ladybird Trust was set up in memory of

Grace Elizabeth Kelly who passed away in November

2014 at the age of four from a rare childhood cancer

called a malignant rhabdoid tumour.

The Grace Kelly Ladybird Trust is working to help save the

lives of other children with cancer. We fund research,

provide education and raise awareness working towards

an earlier diagnosis for children with cancer. We also

provide support for families.

Our first year

We have now completed our first full year of registration and are pleased with all we have

managed to achieve in this short time. We would like to take this opportunity to thank all our

supporters and fundraisers for all they have done to help make our work possible.

There is still a lot of work to be done but the Grace Kelly Ladybird Trust will continue to fight

for children diagnosed with cancer.

Because the children of today all deserve a tomorrow.

Jennifer Kelly Jonathan Purves

GKLT founder and CEO Chairman of the GKLT

For more information on our work, please see our 2016/ 2017 Trustee Annual Report,

encompassing from 30th June 2016 to 30th June 2017.


OUR YEAR IN PICTURES

180,000 AWARENESS CARDS GIVEN OUT

Over 180,000 awareness cards for parents and health professionals teaching the signs and symptoms of childhood cancer have been

distributed so far. GKLT are funding the insertion of this card into the PCHR (red book) given to the parents of newborn babies nationally.

FUNDING VITAL RESEARCH

Research into solid tumours of childhood is very underfunded. GKLT have fundraised £70,000 towards research grants to date. Working

towards a different future for children diagnosed with cancer.

PROVIDING EDUCATIONAL RESOURCES

GKLT have produced educational resources for parents and professionals to raise awareness of the signs and symptoms of childhood cancer.

When a child is diagnosed with a rare solid tissue tumour there are few information resources available. GKLT are working to change this.

SUPPORT FOR FAMILIES

Support is crucial for families affected by childhood cancer. GKLT run an online support group for families from the UK and internationally. One

parent described it as, "A beacon of light in a terrible storm."

FINANCIAL SUPPORT FOLLOWING DEATH OF A CHILD

Between March and June, 4 children from the UK have passed away within the GKLT support group. GKLT provide support grants to the

families affected to help towards funeral and other costs at this devastating time.


“The Grace Kelly Ladybird Trust

has been a huge support to us

throughout our daughter Molly's

treatment for MRT. They reached out

very soon after Molly was diagnosed, and

were a wealth of information about this rare

cancer. They regularly check in on us to make

sure we are all ok, and without their expertise

I'm not sure how we would have coped.”




Raising awareness of the signs and symptoms of childhood cancer remains a key part of

our work. We have been working to teach both parents and clinicians how cancer may

present in children and how to recognise it early. Childhood cancer remains the number

one cause of disease related death of children in the UK making this work exceptionally

important.

Using our medical expertise, the Trust has

built evidence based awareness cards of the

signs and symptoms of childhood cancer.

One card for clinicians and another for

parents. In total over 180,000 cards have

now been distributed in both a local and

national roll out.

It has recently been confirmed that the

awareness card for parents will now be

produced as an optional add in to the

Personal Child Health Record (PCHR) that is

given to the parents of all babies born in the

UK. It will be added free of charge in all

regions that agree to receive it.

This project is being funded by the Grace

Kelly Ladybird Trust to ensure our

information can reach as many children as

possible. Diagnosing children earlier will

help save lives and reduce disability in the

children that survive.


“My little boy (3) was admitted to hospital with a

suspected bone infection. After further tests and 2

courses of antibiotics the doctors were still unsure what

was causing the problem but did not think it was cancer.

I was in the relatives’ room when another parent

showed me one of your information [awareness] cards.

In all honesty, cancer hadn't even crossed my mind.

It came to my attention that my son was experiencing

multiple signs that it could potentially be cancer. I

showed this card to his doctor. It was agreed that a

lumbar puncture would be done the next morning.

My son was diagnosed with acute lymphoblastic

leukaemia.

If it weren't for the information on these

cards, I would have dismissed the chance

of it being cancer and my son might not

be here today.”


OUR IMPACT: EDUCATION AND WORKING

WITH PROFESSIONALS

The Grace Kelly Ladybird Trust has been working with several groups of professionals to

educate on the signs and symptoms of childhood cancer. All our materials have been written

by doctors.

RCGP module on the signs and symptoms of

childhood cancer

Our clinician cards have been used in a Royal

College of General Practitioners E-learning

module teaching General Practitioners the

signs and symptoms to look for. We were

delighted to be involved in the peer review

of this module as well.

We have also produced materials for GP

trainees, including the publication Childhood

cancer in general practice: is it really that

rare? [Innovait, 2017. 10(4) pp. 209 – 217].

Institute of Health Visiting publications

We have been delighted to work in

partnership with the Institute of Health

Visitors to produce Good Practice points for

Health Visitors and Top Tips for parents as

well. This information has been dispersed to

health visitors and parents across the UK and

online with the backing of the Institute of

Health Visitors.

The Grace Kelly Ladybird Trust has also built

a range of online educational resources for

both parents and clinicians to provide

reliable information resources that are

accessible to all.

http://journals.sagepub.com/doi/full/10.1177/1755738016689110




“The charity has been a huge source of

strength for myself as I care for my son who

has had a relapsed rare solid tumour,

infantile fibrosarcoma.

The GKLT are absolutely dedicated

to raising awareness and funding

research for rare and aggressive

childhood cancers. They are an

advocate for families in the terrible

position of having lost a child or

having a very sick child, providing

support and a listening ear.”


OUR IMPACT: RESEARCH

We have been delighted to award two research grants to fund studies investigating rare solid

tumours of childhood, including malignant rhabdoid tumours. These were released in

partnership with the Children’s Cancer and Leukaemia group with £70,000 funded by the

Grace Kelly Ladybird Trust (and the Grace Kelly Ladybird Appeal before charity registration).

One of the reasons childhood cancer survival rates are poor for rare tumour types is due to the lack of funding and research into these specific tumours.

Our work funding research grants to further research in these fields could potentially make a difference aiding the understanding of these tumour types. In time, we hope that this will translate into better treatments for these children.

Project 1: Unravelling the impact of SMARCBI loss in malignant rhabdoid tumours

Professor Maureen O'Sullivan at Trinity College Dublin was awarded £49,600 to undertake a study, "Unravelling the impact of SMARCB1 loss in malignant rhabdoid tumours.” The project hopes to identify

chinks in the tumour make up that could be used to help develop new drugs.

Project 2: Improved therapeutic targeting in malignant rhabdoid tumours

Daniel Williamson at Newcastle University was awarded £49,506 for his study entitled "Improved therapeutic targeting in malignant rhabdoid tumours using discovery proteomics analysis".

This project will look at malignant rhabdoid tumours in precise detail, aiming to infer which drugs may be most effective against these tumours.

It will also look at the potential targets for novel immunotherapies (use the patient's own immune system to fight the cancer).


OUR IMPACT: SUPPORTING FAMILIES

In early 2017, the Grace Kelly Ladybird Trust set up a rhabdoid families online support group.

This group was born out of need because we recognised the lack of support available for

families of children with rare solid tumours.

Set up initially as a rhabdoid tumour support

group, the rhabdoid families group has

expanded to also welcome the parents of

children with other very rare solid tissue

tumours with poor survival rates.

Some of these children have not even

received formal diagnoses because their

tumour types are so rare or unrecognisable.

The rhabdoid families support group started

out for UK families. It has since grown and is

now open to families internationally too.

The rhabdoid families support group

provides emotional support for families

undergoing similar journeys. These families

provide mutual support to each other as well

making the group a close knit community.

Children with these rare aggressive tumours

often have extremely poor outcomes so

the support of others in a similar situation is

proving invaluable to many.

Sadly, in the last 4 months, seven children in

our support group have passed away. Four

of these were from the UK.

The grants received by UK families have

been greeted with relief from families

struggling to meet the costs of their child’s

funeral.

Following the death of a child, the support

group continues to offer support to parents

of children who are now deceased as we

recognise this ongoing need.

“A beacon of light in a terrible storm.” From a parent of a child fighting cancer that found support in our rhabdoid families group


.

”The work GKLT do is simply

invaluable, not only in terms of

raising awareness and funding

vital research, but also because of

the support provided to families

going through the most awful of

times.

I will be forever grateful for the support and

comfort shown since we lost our own little girl

to AT/RT.

The financial support we received from the

charity allowed us to take a much needed break

after Gracie died.

It really is a wonderful, very special charity.”


OUR YEAR IN NUMBERS

Here is a summary of where our income has come from and how we have spent our funds over

our first year of charity registration.

The information below has been extracted from our 2016/2017 accounts. These accounts have

been independently assessed and a full copy can be downloaded from our website and from the

charity commission.

Income 2016/ 2017

General donations £58,477

Restricted donations £6,526

Restricted charitable activities £7,500 Other £7,890 Total income £80,393

Expenditure 2016/ 2017

Research £31,000

Awareness, education £8,170

Support £2,000

Fundraising, events, advertising £9,964

Other £662

Total expenditure £51,796

Restricted donations are where the donor has specified that funds are to be used for a specific purpose

Restricted charitable activities include grants with specific conditions applied, for example restricted to

our signs and symptoms awareness card projects.

For every £1 that has been donated, 88 pence will be used for charitable activities, with just 12 pence

used to generate more funds.


VOLUNTEERS AND FUNDRAISERS

From volunteering at events to giving out our signs and symptoms awareness cards, our

volunteers have been a huge help to the Grace Kelly Ladybird Trust. Without them, we would

not have been able to accomplish nearly so much. We are extremely grateful for this support.

Fundraisers We rely on the support of our wonderful fundraisers who have given their time, commitment and a lot of energy to fundraise for the Grace Kelly Ladybird Trust. We have included some highlights from the year, but it has not been possible to include everyone. We would though like to thank everyone involved in any way.

From fun events and bake sales to carol

singing, pyjama swimming events and fun

runs, we are hugely grateful to everyone that

has helped the Grace Kelly Ladybird Trust – it

has been an action packed year.


LADYBIRD GARDEN PARTY, AUGUST 2016 – AN

INCREDIBLE £18,500 RAISED

August 2016

Soon after our official Grace Kelly Ladybird

Trust charity registration, we held the

Ladybird Garden Party.

It was an incredible event starring Katy

Ashworth from CBeebies show, “I Can Cook.”

Katy Ashworth held two live children’s shows

and there were stalls and activities running

alongside. Children and parents enjoyed

activities such as archery, coconut shies,

pony riding, face painting and much more.

The event was set in beautiful Spetchley Park

Gardens in Worcestershire with over 1,000

people attending to enjoy the shows and

garden party.

We are grateful to everyone that helped

make this event possible, especially to Katy

Ashworth for donating her time and

Spetchley Park Gardens for allowing us the

use of their magnificent grounds.

£18,500 raised


CHRISTMAS JUMPERS FOR GRACE RAISED £7,000

December 2016

This was our second Christmas jumper event. There were 57 different events that took place across the UK, raising just over £7,000. There was an amazing response. Our thanks go to everyone that organized events, took part or helped make this a fantastic event.

Of particular mention, thank you to St Peter’s Church of England First School who raised a wonderful £500 by wearing Christmas jumpers, selling gingerbread and also carol singing in the town centre.

#christmasjumpers4grace

Many GP surgeries across Worcestershire held events including Stapenhill Medical Practice and The Glebeland Surgery, Belbroughton.

Sisters Michelle Nolan and Emma James held 7 events between them taking in over £1,000 from their events alone.

Christmas jumpers for Grace 2016 was a great way to raise awareness and fundraise for the Grace Kelly Ladybird Trust whilst those taking part could enjoy the festivities.

Christmas jumpers for Grace will be returning for Christmas 2017, so not long to wait!


LADYBIRD FUN AFTERNOON – RAISED £3,000

The Ladybird family fun afternoon was a

fantastic mix of activities, entertainment,

crafts and shopping. Thank you to all those

who gave up their time to help make this

event a success.

Despite extremely heavy rain, the event was

a success, with £3,000 raised for the Grace

Kelly Ladybird Trust and a lot of fun had as

well!

Some of our fundraising

challengers

Over the course of the last 12 months, we

have had a number of fundraisers taking on

some incredible personal challenges.

It is impossible to mention them all, but we

are grateful to all our fundraisers.

Here are a few of particular mention: Emily

Haslam and Judith Willis in the Manchester

10k, James Rees in a 10k Great North Swim,

Jo Geals in the Worcester Half Marathon and

Matthew Colins in the Vichy Iron Man.

Our support has been growing encouraging

more individuals to take on some fantastic

challenges.


LONDON MARATHON 2017

The London Marathon is a world renowned event with international runners raising funds for causes important to themselves.

This year, despite us being unable to have a formal charity place, we were delighted to have individuals fundraising for us using their own personal places that they had received in the general ballot.

A fantastic effort by Simon Peter Edwards,

Phil McGrahan, and Liz Acaster who between

them raised in excess of £3,000 for the Grace

Kelly Ladybird Trust that day.

Simon, (above, left) along with his wife Lara

have been fundraising in memory of their

daughter Esther, who sadly passed away in

2016 at the age of four from a rare childhood

cancer.

So far they have raised over £4,000 for the

Grace Kelly Ladybird Trust in Esther’s

memory. Thank you so much for your kind

support.


31 MILE BIRMINGHAM TO WORCESTER CANAL RUN

AND THE 100KM COTSWOLD WAY RAISES £3,400!

In April Michelle Nolan and Ellen Boaz

completed an incredible 31 mile running

challenge along canal paths raising over

£2,000 on an extremely hot day.

Michelle then followed this with another

challenge in July, this time with Shelley Jay-

Lewis. They both completed the inaugural

100km Cotswold Way Challenge, an

incredible feat.

Our immense thanks to Michelle, Ellen and

Shelley for their hard work in fundraising,

raising awareness and completing these

huge challenges.

Special thanks also to Claire Wilmott

for her fundraising for the Grace Kelly Ladybird Trust. In November, she held a large bake sale and then a charity door collection at work a few weeks later.

Together, with price matching from her employer, Barclays Technology Centre in Radbroke, she raised a wonderful £2598 for the Grace Kelly Ladybird Trust.


LOOKING AHEAD

The Grace Kelly Ladybird Trust has now completed its first full year of registration. During this time, we have grown significantly both in terms of size and public awareness. We are proud of all we have accomplished over such a short space of time, and we have ambitious plans for the future to continue our fight against childhood cancer. We will continue to fund research and provide education on the signs and symptoms of childhood cancer amongst other projects to work towards earlier diagnosis for children across the UK.

We will work to provide information and support to families, especially the families of children with rare solid tumours who have little other support. We are currently working on the production of resources for General Practitioners and also specific information packs for families of children diagnosed with rhabdoid tumours. Our close work with other charities will enable us to reach this aim as effectively as possible. There is still a lot to do, and our work is dependent on your support to help make this change for all our children.

There are many ways that you can help, including fundraising, donating, raising awareness

and helping give out awareness cards.

Working towards a time when ALL children with cancer face a healthy future.

Because the children

of today ALL deserve

a tomorrow.


gracekellyladybirdtrust

LadybirdTrust

Grace Kelly Ladybird Trust

For childhood cancer awareness, research and support

www.gracekellyladybird.co.uk

[email protected]

Registered charity number 1167783

http://www.gracekellyladybird.co.uk/

mailto:[email protected]

THE GRACE KELLY LADYBIRD TRUST ANNUAL REVIEW 2016 / …

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