Ellie Simms

Ellie was diagnosed with high-risk abdominal embryonal rhabdomyosarcoma in May 2021, aged one. Ellie had 16 months of treatment including IVADO chemotherapy and regorafenib on the FaR-RMS trial. However, these treatments had limited results and she sadly passed away on the 4th December 2022, aged three and a half.

Ellie's Story...

In May 2021, Ellie was unwell and after speaking with the local surgery (not directly with the doctor) they said her symptoms were due to constipation and gave her a prescription. After a couple of days, she still wasn’t better and we decided to take her to Bassetlaw Hospital. After having blood tests, scans and being seen by a paediatrician, she was sent to Sheffield Children’s hospital via an ambulance. They did an ultrasound, more blood tests and an MRI which confirmed Ellie had a tumour in her abdomen. She had a biopsy, along with the insertion of a nephrostomy tube, central port line and an NG tube. A week later we were sent to Leeds hospital for a PET & CT scan and the following day it was confirmed that Ellie’s tumour was Rhabdomyosarcoma.

Ellie had 9 rounds of intensive chemotherapy, which started the same day as we heard the word Rhabdomyosarcoma. Unfortunately, the first 2 rounds didn’t have good results and they added another drug to the treatment, Doxorubicin, which came with severe side effects. This was a bitter sweet moment as it massively reduced the tumour but due to the problems it caused she was only allowed a certain amount of it. She went on to have 28 sessions of radiotherapy and numerous blood tests, MRI scans, UT scans, CT scans, and kidney function tests.

The treatment was shrinking the tumour but the next phase of maintenance chemotherapy didn’t have any impact. This led to another biopsy, bone marrow biopsy, blood tests and CT Scan. As a result, Ellie went on the FaR-RMS trial and received the drug, regorafenib. This had limited results and came with very poor side effects making her so unwell that the treatment had to be stopped. Unfortunately there weren’t any further treatment options and she sadly lost her fight on 4th December 2022.

What was your journey with cancer like?

Ellie always had a smile on her face and her wellies on her feet and allowed her cheeky personality to shine through even the toughest times and we, as her parents, could not be more proud of her.

What changes would you like to see for children diagnosed in the future?

We have decided to create Ellie’s Arc to hopefully help achieve more positive, and less harmful, treatments for Rhabdomyosarcoma

We would like to see changes with regards to the range of treatments offered and less harmful treatments; one of the drugs Ellie had meant she would have been on heart medication later in life. She would have required regular checks on her kidneys and heart muscles. Personalised treatments that target the tumour without causing problems elsewhere would be the ideal result. Also, improved training for GP’s to enable more simple and faster identification of cancer in children.

News

Read all the latest fundraising news, charity news and commentary on childhood cancer.

Go Gold Casino event in London raises £9.5K

On the 11th March 2023 families, medical professionals and scientists came together as a community.

Elliott’s Arc launches and presents £10K cheque raised by his community

The launch took place at a special memorial assembly at Elliott’s school.

Time to think bigger. Time to bring Alice’s Arc to the USA.

We will be opening as a 501(c)(3) in 2023.

A young girl’s legacy: pioneering blood test can help treat rare childhood cancer

Press coverage received in Sunday’s Observer on 15th January 2023.

Dexter’s Lush Dragon Egg Bath Bomb Raises £150K

The sale of gold bath bombs throughout UK Lush stores raises £150K.

Research Focus: an update on our rhabdomyosarcoma research projects

A round up of our RMS research portfolio.

Liquid biopsy for rhabdomyosarcoma research project shows promising results

Pilot findings published in an article in the Journal of Clinical Oncology.

For sale now! Season’s Greetings cards

Our ‘Say My Name’ Season’s Greeting’s card are now available to buy.

Crowns incredible Tour De Broads cycle raises over £11K for Amber’s Arc

Epic cycling challenge for Amber’s Arc raises over £11K.

September 2022 – Childhood Cancer Awareness Month (CCAM)

Telling the stories of the inspirations behind our work is the focus for CCAM 2022

Washington Post: To save children with cancer, doctors turn to new weapons

Alice’s Arc referenced in Washington Post news article discussing research in children’s cancers

Lush launches ‘gold’ bath bomb campaign for Childhood Cancer Awareness Month

Lush will be selling a ‘gold’ dragon’s egg bath bomb in support of Dexter’s Arc

Meet the researcher: Dr Joanna Selfe at the Institute of Cancer Research (ICR)

An insight into life in the laboratory for Dr Joanna Selfe at the ICR.

Annual Report 2020 – 2021

The Alice’s Arc annual report covering 1st October 2020 to 30th September 2021.

Alice’s Arc co-funds ‘Living-REFoRMS’ research project with CCLG

Alice’s Arc is delighted to be collaborating with CCLG to deliver this research to improve the treatment decision-making process for families.

Alice’s Arc visit Wellcome Sanger Institute

Delighted to discuss progress on research regarding genetic markers of rhabdomyosarcoma and improving treatment therapies.

15 strong team from Gaspard’s Arc raise over £11K at Tough Mudder event

They took part in the London West 10kms Tough Mudder in support of Gaspard’s experience with rhabdomyosarcoma.

Sara Wakeling takes on patient advocate role for NexTGen Cancer Grand Challenge

Sara Wakeling is a patient advocate on the Cancer Grand Challenge, NexTGen.

Alice’s Arc presents the parental perspective as CCLG rhabdomyosarcoma education event

Delighted to be invited as speakers representing the parental perspective of rhabdomyosarcoma.

Want to tell your story? Please participate in this research interview for REFoRMS

Please consider participating in a research interview as part of the REFoRMS (Relapsed and Refractory Rhabdomyosarcoma) study, led by the University of York.

First-ever debate held on improving outcomes for childhood cancer in the House of Commons

On Tuesday 26th April 2022 this debate was held for the first time with 22 MPs speaking on behalf of constituents.

Alice’s Arc funds new project investigating an aggressive mutation identified in fusion negative rhabdomyosarcoma

New research project aims to lead to better outcomes for children with the MYOD1 L122R mutation in fusion negative RMS.

18 runners raise £16K at the London Landmarks Half Marathon 2022

2022 LLHM team of 18 runners raise £16K for research into rhabdomyosarcoma.

Alice’s Arc makes delivery to Great Ormond Street Hospital

On 7th March 2022, we visited Great Ormond Street Hospital, where Alice’s care and treatment for rhabdomyosarcoma was led.

Alice’s Arc visits the University of Birmingham for research update

Alice’s Arc had the opportunity to meet the research team undertaking the rhabdomyosarcoma projects invested in and to tour the laboratories

Alice’s Arc funds two roles for the European Paediatric Soft tissue sarcoma Study Group (EpSSG)

The roles are for a Scientific Project Manager and a Statistician.

An interview with Stella Man

This is the first in a series of meet the Alice’s Arc researchers across our research projects.

Alice’s Arc invests a further £130K for a work package relating to the development of a CAR T-cell treatment for rhabdomyosarcoma

This new work package will explore the targets identified in RMS model systems with a focus on clinical translation.

Alice’s Arc welcomes four new Arcs to its unique network created for rhabdomyosarcoma families

Alice’s Arc invests £266,199 into a project designed to develop CAR T-cell treatment for rhabdomyosarcoma

Royal Parks Half Marathon 2021 raises staggering £150K for Alice’s Arc

Almost £75K raised in honour of Sophie Fairall, who passed away on the 18th September 2021

Go gold for Childhood Cancer Awareness Month (CCAM) – September 2021

Logo for Frontline and Relapse Rhabdomyosarcoma Study (FaR-RMS) is launched

Alice’s Arc London Landmarks Half Marathon team raise over £19K

Jessica’s Charity Raffle raises a brilliant £7K

WATCH THIS SPACE FOR THE LAUNCH OF THE ARCS. COMING SOON

Annual Report: 30th September 2019 to 30th September 2020

55 mile walk from Guildford to Fareham raises £8.5K in recognition of Sophie Fairall’s fight with rhabdomyosarcoma

International project Alice’s Arc jointly funded uncovers genetic changes underlying the development of rhabdomyosarcoma

Team Ben’s New Forest Rattler sporting challenges raises a tremendous £60K

The Little Tigers Charity Raffle raises an astonishing £16K

Alice’s Arc features in the Institute of Cancer Research’s Search magazine (March 2021)

We are delighted to appear in the ICR’s latest edition of their twice-yearly Search magazine.

The Carrot Community launches in honour of Freddie Carpenter, who died in October 2018

Freddie’s family are inviting you to become part of this special community this Easter and support Alice’s Arc

Will Rutt’s family make £5K donation to Alice’s Arc following his death

Will Rutt, aged 20, sadly passed away on Sunday 21st February 2021 after a four year journey with stage 4 ARMS

Almost £20K raised in memory of Jess Macqueen, who passed away in October 2019

Alice’s Arc invests £220K in new fusion-negative rhabdomyosarcoma (RMS) research project with the University of Birmingham

This project will increase understanding of RAS gene pathways in RMS with a focus on DNA repair and replication stress.

BullionVault make £3.25K donation inspired by Gaspard Ronsseray

Having being touched by Gaspard’s journey with cancer, a member of staff nominated Alice’s Arc to receive a donation

Alice’s Arc invests £247,340 in research exploring the use of liquid biopsies in the treatment of children with rhabdomyosarcoma

Assessing The Clinical Value For ct-DNA In Blood To Monitor The Response To Treatments and Identify Disease Recurrence

Candle created in memory of Elsa McGee raises £2.4K and counting for Alice’s Arc

300 of these candles incorporating Elsa’s very own artwork and name have been sold over the festive season

Alice’s Arc commits to investing £1.1million in to rhabdomyosarcoma research projects over the next three years

We are delighted to be supporting five innovative research projects led by several leading cancer research centres

Fairall family makes £5K donation to Alice’s Arc

Their daughter, Sophie, was recently diagnosed with rhabdomyosarcoma and her family are fundraising for the charity.

Frontline and Relapse Study in Rhabdomyosarcoma (FaR-RMS) clinical trial is now open

FaR-RMS opened in September 2020 and is now open in ten sites in England and Scotland and several sites across Europe.

Plan.com raise almost £8K for Jess Macqueen by turning pink

On Friday 6th November 2020 Plan.com organised a turn ‘pink’ fundraising day for Alice’s Arc.

Virtual London Marathon raises £4.5K for Alice’s Arc

Phil and Vicky Macqueen both ran this virtual event in memory of their niece, Jessica Macqueen.

‘Go Gold’ for Childhood Cancer Awareness Month (September 2020) raises close to £30K

We worked closely with families impacted by cancer to help local communities and businesses ‘go gold’ and fundraise.

For Sale – Alice’s Arc face masks

The pandemic of Covid-19 has made it mandatory to wear face coverings in certain settings. Why not buy one of ours?

A 10 minute flight strapped to the wings of a plane secures over £7K for Alice’s Arc

A unique wing walk, in memory of Alice Wakeling and Freddie Carpenter and to go gold for children with cancer

The McGee’s 5 day March to Merseyside raises over £5K for Alice’s Arc

In memory of Elsa McGee, her Dad and other family walked 125 miles over 5 days along the Leeds to Liverpool canal path

Tom Hart has raised an enormous £12,860 in his Tiger King Challenge for the little tigers

Covid-19 inspired Tom to grow his hair and transform himself in to the Tiger King to raise funds for Hope With Gaspard

Team Faye-Bae raise £2.5k by running their own 10km challenge

To mark Faye’s 5th birthday and as a way of giving back since Faye’s cancer diagnosis, her Aunt and Grandad ran 10kms

Annual Report: 30th September 2018 to 30th September 2019

Please read this edition of our Annual Report to get a snapshot of our activity for the year and our future plans.

Walthamstow Hall School raise a grand total of £11,781.80 after a year of fabulous fundraising

Alice’s school choose Alice’s Arc as their charity of the year for the 2019/20 academic school year

Hayley and John McGee entrust £30K of Elsa’s Trust to Alice’s Arc

Elsa sadly died in April 2020 and her parents want the funds raised to contribute to research in to rhabdomyosarcoma.

Alice’s Arc delivers goody bags to children with cancer at Great Ormond Street Hospital

Generous support for the charity enabled us to create goody bags for children with cancer receiving chemotherapy at GOSH

Alice’s Arc is delighted to appoint Natalie Carpenter as a new trustee for the charity

Natalie, a trainee psychologist, is the mother of two boys, both diagnosed with cancer within months of one another.

£8K raised in honour of Elsa McGee and her journey with rhabdomyosarcoma

After a 4 year battle, Elsa sadly passed away from embryonal rhabdomyosarcoma on April 14th 2020.

Walthamstow Hall School arrange ‘Active for Alice’ at Knole Park, raising a brilliant £1,183

Alice’s school organised a fun run, on Saturday 14th March 2020, in Knole Park for the whole school and their families.

Alice’s Arc ‘Go Gold’ Casino Night raises an incredible £4,400

We hosted 85 people at St Julian’s Club, Sevenoaks on Saturday 14th March 2020 at a ‘Go Gold’ casino fundraising event

Laura Trott, local MP, invites Sara Wakeling to 10 Downing Street

Sara was delighted to take up the opportunity to attend this reception in celebration of International Woman’s Day

Alice’s Arc press coverage in Kentlive News and the Sevenoaks Chronicle

This tells Alice’s cancer story from her point of view and illustrates the mission and progress of Alice’s Arc

Three Valleys Community Club raises £1770 for Alice’s Arc

The club supported the charity in 2019 and ran several fundraising initiatives including a quiz.

Global law firm, Allen & Overy have raised £60K for Alice’s Arc in just two months

There have been various fundraising initiatives put in place around the firm’s network in memory of Alice Wakeling.

Alice’s Arc raises almost £2K on Valentine’s Day

Local schools Walthamstow Hall Junior and New Beacon held Valentine’s fundraising events

Alice’s Arc makes Valentine’s deliveries to Great Ormond Street Hospital

Up Up and Away and Alice’s Arc enjoyed visiting the oncology wards with heart balloons, sweet cones and chocolate hearts

‘Go Gold’ Casino Fundraising Event in Sevenoaks, Kent

Are you feeling lucky? Please join us for a gold casino fundraising evening raising money for Alice’s Arc.

Edward Gostling Foundation provides £5K grant to Alice’s Arc

The Edward Gostling Foundation supports people living with long-term illnesses

Almost £20K raised in memory of Jess Macqueen, who passed away in October 2019

Jess Macqueen passed away from rhabdomyosarcoma just 5 months after her diagnosis

Alice’s Arc has formed a collaboration with named fund, Hope With Gaspard

We are delighted to announce that, the newly formed fund, Hope With Gaspard, will raise funds for Alice’s Arc

Credit Agricole’s ‘Helping Hand’ initiative donates £4K to Alice’s Arc

Benjamin Ronsseray nominated the charity for this award following his son, Gaspard’s diagnosis with rhabdomyosarcoma.

Alice’s Arc co-hosts European Paediatric Soft tissue sarcoma Study Group (EpSSG) Winter Meeting 2019

The EpSSG meeting brings together international professionals devoted to treating children with soft tissue sarcoma

Holy Rood School parents raise £9.35K in memory of Jess Macqueen

23 parents ran the Watford Autumn 10K in support of Alice’s Arc

Alice’s Arc donates another £69K to the Institute of Cancer Research (ICR)

Alice’s Arc has fulfilled it’s initial three year pledge to the ICR and given the team a further £69K for research

Alice’s school, Walthamstow Hall School, picks Alice’s Arc as it’s charity for the year

The school has already raised almost £10K. Latest fundraisers include the sale of the ‘Alice’ bow and a singing event .

A team from Third Bridge Forum raised almost £10K for London to Paris Cycle ride

8 cyclists rode over 240 miles from London to Paris over three days to raise funds for Alice’s Arc

The little girl, who inspired the creation of Alice’s Arc, has died, aged 7

On the 8th October 2019, Alice Wakeling passed away peacefully, after almost 5 years fighting rhabdomyosarcoma.

Royal Parks Half Marathon raises almost £37K for Alice’s Arc

The charity had 14 runners participating in this stunning central London Half Marathon.

Alice’s Arc donates £69K to Professor Janet Shipley’s Research Team at the ICR

We have now donated almost £280K to the ICR team since the inception of the relationship in 2016.

Alice’s Arc launches new marketing brochure

This leaflet provides information on who we are, what we do, why we do it and how you can help.

Shane’s epic 940 mile cycle ride for Alice’s Arc raises £18,137

Shane is taking on this challenge in August, cycling from Land’s End to John O’Groats, in memory of his nephew, Freddie.

ICR appoints new Researcher using funds raised by Alice’s Arc

Olivia Ruhen will work in a Postdoc role on the ICR’s rhabdomyosarcoma research team

Alice’s Arc walk on fire raises over £18K

Over 100 spectators braved snowy conditions to watch 45 people fire walk to raise funds to help children with cancer

Inspired by Alice

We are delighted to be featured in an article in the ICR’s Spring 2019 edition of their Search magazine

Dunn AC Ltd, nationwide HVAC experts, announce their support of Alice’s Arc

Dunn AC Ltd is helping raise awareness and funds for the charity. They have added the logo to their fleet of vans

Alice’s three month off relapse treatment scans are clear

Alice’s recent scans show no evidence of cancer. The damage from the AMORE surgery and brachytherapy has healed.

Waitrose in Rickmansworth raises £420 for Alice’s Arc

In memory of Freddie Carpenter, Waitrose Rickmansworth, supported the charity with their community green coin scheme.

Alice’s Arc has donated £102,084 towards research in to rhabdomyosarcoma

These funds have enabled the recruitment of a Clinical Research Fellow to add to the team researching rhabdo at the ICR.

Only 8% of new cancer drug authorisations are for children – this needs to improve

The ICR has published a report called ‘From patent to patient – analysing access to innovative cancer drugs

Alice’s Arc reaches £250K milestone fundraising

We are delighted to share that the charity has raised over £250K since our inception 2.5 years ago.

Over £10K raised in memory of Freddie Carpenter

It’s a huge tribute to a wonderful 5 year old. Donations to Alice’s Arc at Freddie’s funeral reached over £10K

Fancy walking on fire for charity?

Alice’s Arc is hosting a fire walk fundraiser in conjunction with the Mayor and local Sevenoaks Council

ICR makes progress researching Rhabdomyosarcoma

The ICR team continue to make progress researching rhabdomyosarcoma using the funds raised by Alice’s Arc

Special quiz night hosted in memory of Finn Clancy raises £4.5K

Finn’s mother arranged a fantastic event in Leigh-on-Sea, incorporating a quiz, a live auction and a raffle.

104.5miles walked and 15,000 calories burned for Alice’s Arc

Team Cheek went on another colossal walk for the charity raising in excess of £3K

Walthamstow Hall Junior School host family fun morning to raise money for Alice’s Arc

The family fun morning hosted by the school Alice attends raised in excess of £2K for the charity.

Finn the Phoenix’s family and friends raise over £5K

Finn, passed away from rhabdo, aged 10 after a courageous 18 month fight with the disease.

Fresh lemonade stall proves a fundraising winner

Two school girls create fresh lemonade recipe and set up a stall selling it at an event celebrating Armed Forces Day

Sporty fundraising for Alice’s Arc

The charity has received support from various individuals choosing to run and cycle to raise money for the charity

Mike Lancaster runs London Marathon on behalf of Alice’s Arc

Mike ran the London Marathon in 3 hours and 2 minutes raising almost £4K in support of a family impacted by rhabdo

Hampstead School identify Alice’s Arc as a charity to support as part of their First Give Programme

First Give and Hampstead School joined forces to help children support their community and pitch for their chosen causes

Please support Alice’s Arc on Amazon Smile UK

Choose Alice’s Arc when shopping on Amazon Smile UK and 0.5% of the purchase price will be donated to us

Alice’s cancer returns at the location of the primary tumour

Alice is being treated using a relapse chemotherapy regime and a specialist procedure in Amsterdam known as AMORE

Alice’s Arc donates £80K to the ICR

This money covers the salary of a Higher Scientific Officer to support the ICR’s rhabdomyosarcoma research.

Delay in reforming European rules could deny thousands of children access to latest cancer drugs

Alice’s Arc has commented on a letter to President Juncker regarding delays to the reform of EU Paediatric Regulation.

Alice’s Arc receives generous donations from Corporate organisations

The charity is delighted to have received support from accountants, Kingston Smith and a major US private equity house.

Global law firm, Allen & Overy makes annual commitment to support Alice’s Arc

Allen & Overy will make an annual donation to support the mission of Alice’s Arc

Alice’s Arc donates money for an injection of neulasta to help protect against infections after chemotherapy

We have provided funds to enable an injection of the drug, neulasta for a 3 year old boy suffering from rhabdomyosarcoma

Alice’s Arc makes £25K donation to the ICR

The charity has provided the ICR with funds to acquire laboratory reagents and equipment

Alice’s Arc co-signs letter to change EU law to force pharmaceutical companies to trial cancer drugs in children

Current EU legislation allows Pharmas to use a loophole in EU legislation to avoid trialling cancer drugs in children

Paul Beaumont goes bald and beardless for Alice’s Arc

Paul raised over £2K shaving his 9 inch hair and beard off and donating it to the little princess charity

Make Believe Drama hold ‘Parents Join for the Day’ Fundraiser

Make Believe Sevenoaks invited parents of children in their drama class to join in for a day to raise money for charity

The Politician’s Daughter pub hosts art fundraising event

Simon and Sandy Haddock showcased their recent art works at an art evening which raised £1K for Alice’s Arc

Rani Ahmed walks 25km Thames Bridge Challenge

Rani completed a 25km walk across 16 London bridges raising £1K for Alice’s Arc.

Accenture raises £3K for Alice’s Arc at auction fundraiser

Accenture nominated Alice’s Arc as one of three charities to donate funds raised from its annual OPSCARS auction

100km ‘Walk in the Park’ raises £10K

Matt Cheek and Dave Watts walked 100km in 24hours for Matt’s 3 year old nephew who has rhabdomyosarcoma.

Our Mission

We have already raised £3,500,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.

Raised £3,500,000

Ellie Simms

Ellie's Story...

What was your journey with cancer like?

What changes would you like to see for children diagnosed in the future?

News

Our Mission

We have already raised £3,500,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.

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