Helpline 07939 046 030
Freephone 0300 102 17 22*

Nicks Triathlon in Support of his daughter Eilidh

22 October 2019

Nicks Triathlon in Support of his daughter Eilidh

Nick Frost is testing his body to the limit by taking on the "Outlaw" Iron Distance triathlon in support of his daughter Eilidh who has NF1. Here he tells us about Eilidh’s story and his reasons for taking on such a formidable challenge.

Eilidh has just celebrated her 10th birthday last weekend and is an amazingly beautiful, caring and happy child.

Around 5-6 years ago during a visit to the doctors, for an unrelated check-up, the doctor recognised some marks on her body which turned out to be café au latte marks. We call them Giraffe Spots as Eilidh is mad on Giraffes!

Quite quickly after this appointment we visited the genetic clinic at Aberdeen Royal Infirmary who have been amazing, followed by several visits to other departments. Eilidh was diagnosed with NF1 and both me and Carol were checked and cleared of the genetic condition.

The appointments have continued yearly ever since and thankfully apart from some mild behavioural issues, which could be classed as children being children, no other symptoms have been found and Eilidh leads a very happy life.

We do worry and as she is approaching a critical age in her life we often over analyse daily behavioural changes and each year we have to discuss with teachers some of her less productive features of Eilidh's behaviour such as lack of attention and focus and forgetfulness to ensure they understand the common behavioural differences often exhibited by children with NF.

"Apart from some mild behavioural issues, which could be classed as children being children, no other symptoms have been found and Eilidh leads a very happy life. "

– Nick

This is where the Nerve Tumours UK website has helped immensely. The help sheets and information have time and again proven invaluable for us as parents and our families and other important people such as the teachers in Eilidh's life.

Therefore, to give something back I decided I wanted to raise some money for the charity and set about finding myself a challenge.

We recently had a holiday in France, near Nice, and on arriving back in Nice to fly home I noticed the Nice Ironman was the following day. As an already keen cyclist but someone who has never swam distances nor a comfortable runner, the idea of an Ironman scared me, yet the prospect excited me. This would indeed be a worthy and serious challenge for me at 45!

Before committing to the challenge, I joined a local triathlon club with coached swimming lessons to see if I was capable of distance swimming and after a few sessions decided this is something I can work towards. I have since booked my place on the 'Outlaw' Iron distance triathlon which will take place on the 26th July 2020 in Nottingham.

The swim is 3200m followed by a 180km bike ride followed by a full marathon, each of which scares me stiff never mind completing all three one after each other! I have started training which is going well although my poor knees are screaming for me to stop, having just opened a Just Giving account I am now committed to the challenge. 

Everyone at Nerve Tumours UK would like wish Nick the best of luck in his triathlon and thank him for his all his efforts in fundraising for our shared vital cause!

"This is where the Nerve Tumours UK website has helped immensely. The help sheets and information have time and again proven invaluable for us as parents and our families and other important people such as the teachers in Eilidh's life. "

– Nick

Filter News

Filter by Date
Category
Reset

Gisela’s Story

Read More

Advice for Students with NF1, NF2-Schwannomatosis, and Schwannomotosis

Read More

Ella’s Story

Read More

Georgia’s Story

Read More

Nottingham NF1 INFormation Day 2024 A Big Thank You

Read More

Quality of Life Survey

Read More

Advice: Travelling With NF

Learn how to navigate travel with NF confidently. Essential tips and resources for smooth, stress-free journeys by train, pla

Read More

Join the NF1 Cutaneous Neurofibroma Consortium Project

Join a groundbreaking NF1 study to help develop better treatments for neurofibromas. Open to adults with a clinical/genetic N

Read More

Nottingham NF1 Information Day 2024

Join us for an insightful NF1 Information Day in Nottingham on October 5, 2024. Expert talks, Q&A, and community connection.

Read More

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