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Esme’s Summer of Slides

02 March 2023

NF1Mummy update on Esme's matchday mascot role for Aston Villa v Crystal Palace:

Not phased by the 42,000 crowd she marched onto the pitch at Villa Park hand in hand with @mattycash622 .

Thanks to @avfcfoundation for recognising all her fundraising efforts for @nervetumoursuk and asking her along today. You were all amazing. We had 'the best day ever' in the words of Esme herself.

Best of all we came away with a win .����♥️��⚽��

#avfcfoundation
#avfc

Newsflash:

Up The Villa: watch Esme, one of our youngest NF Warriors, join the team as a matchday mascot when Aston Villa plays Crystal Palace this Saturday 4th March 2023 at 3pm. Match highlights will be on BBC Match of the Day on Saturday at 10.20pm.

Kate, Mother of Esme

"The wonderful people @avfcfoundation and @avfcofficial heard all about Esme's amazing fundraising efforts and she has been asked to be mascot for our beloved Aston Villa this weekend. Her shiny new kit arrived today, and her face just says it all. UP THE VILLA!!!

We are planning our next fundraiser so watch this space." 

Read her story and involvement in raising awareness of Nerve Tumours (NF1 & NF2-Schwannomatosis).

Last summer Esme set herself and her friends and family the challenge of sliding down as many slides as they could to raise money for Nerve Tumours UK. Esme was diagnosed with Neurofibromatosis Type 1 at 6 months old, and now at the grand old age of 3, she has definitely raised awareness of the condition that both Esme and her mum live with.

Esme smashed her first fundraiser, making it to slide 100 today!

A big thank you to every one of you that has sponsored, joined in, shared their posts or simply asked more about Neurofibromatosis. She turned the last weeks into a summer of fun and fun-raising for all that participated and followed her sliding efforts.

Esme's efforts have now been rewarded in style.

The four year old was among thousands of young children nominated for the PAW Patrol Awards 2022, with her nomination winning the hearts of the judges.

Esme was awarded the Skye Award for Kindness at the award ceremony in London's Soho Hotel. The event was hosted by model and media personality Vogue Williams. Winners also received special Paw Patrol goodies, plus family tickets to Nickelodeon Land.

Esme with her Skye Award for Kindness

Esme with presenter Vogue Williams

The judges said: 'Esme has coped with her own challenges and still thought about others. We also loved the simple but effective idea of raising money by going down slides.'

"Last summer she raised over £2,500 for Nerve Tumours UK, a charity helping people with NF, by going down 100 slides. ‘This year, she sorted through her clothes and toys and ran a pop-up shop. She asked local stall holders to come along and also asked local people to donate to the raffle. Esme raised an impressive £1,500 and donated it to charity. 'Anything that didn't sell she donated to a local charity to support families in need. ‘She oozes kindness and truly does go above and beyond to support the needs of others."

– Kate & Stephen, Esme's parents

Congratulations Esme, you are doing an incredible job of raising awareness of Neurofibromatosis and helping others!

 

The slide challenge started on July 18th and kept going until September 1st 2021.

Summer of sliding

If you took part, share your photos on social media #EsmesSummerOfSlides

Send us your sliding photos to info@nervetumours.org.uk 

""Esme and her friends and family have loved completing the summer of slides. In just under 6 weeks, Esme has slid down over 100 slides to raise money for Nerve Tumours UK. We have had so much fun and have loved spreading awareness of Neurofibromatosis. So many people joined in to support us, and donated. The challenge also enabled people to reach out to talk about the condition. It has been an amazing experience, and myself and Stephen are very proud parents" Follow Kate on Instagram @NF1Mummy"

– Kate @NF1Mummy
When committing to events for Nerve Tumours UK, only commit to physical challenges that you are capable of, and in case of any underlying conditions, discuss with your GP or Specialist. Nerve Tumours UK cannot be held responsible for any accidents or damages that occur throughout the training commitment or the challenge itself. 

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK