Post on 19-Mar-2022
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
THE GRACE KELLY LADYBIRD TRUST
ANNUAL REVIEW 2016 / 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 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.
Grace Kelly Ladybird Trust Review 2016/ 2017
“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.”
Grace Kelly Ladybird Trust Review 2016/ 2017
THE GRACE KELLY LADYBIRD TRUST
ANNUAL REVIEW 2016 / 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
“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.”
Grace Kelly Ladybird Trust Review 2016/ 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
“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.”
Grace Kelly Ladybird Trust Review 2016/ 2017
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).
Grace Kelly Ladybird Trust Review 2016/ 2017
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
Grace Kelly Ladybird Trust Review 2016/ 2017
.
”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.”
Grace Kelly Ladybird Trust Review 2016/ 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
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
Grace Kelly Ladybird Trust Review 2016/ 2017
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!
Grace Kelly Ladybird Trust Review 2016/ 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
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.
Grace Kelly Ladybird Trust Review 2016/ 2017
gracekellyladybirdtrust
LadybirdTrust
Grace Kelly Ladybird Trust
For childhood cancer awareness, research and support
www.gracekellyladybird.co.uk
contact@gracekellyladybird.co.uk
Registered charity number 1167783