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Pat’s Triathlon Challenge

21 May 2022

Last year I completed my first fundraiser challenge, walking 2 miles every day for 7 days.

I was told by quite a few people that this was going to be a struggle and I can tell you now; I really struggled. But it was incredible to see so much support, even during the pandemic there were so many donations - I was blown away by the response. I appeared on BBC Midlands Today News and even some radio stations.

Patrick was diagnosed with Neurofibromatosis Type 2, (NF2) many years ago, with a number of benign tumours growing across his body and leading to reduced mobility.

These are very rare conditions and so it is less understood by the large majority of people across the UK. Therefore, it receives a lot less funding in terms of medical research as well as support for the people who suffer with these conditions. I believe it to be incredibly important to raise awareness for charities and organisations which fund the research and support of rarer conditions which is why I am once again going to be undertaking another fundraiser.

This challenge will be far more challenging for me because for one, I haven’t been swimming in 6 years, and two, the distances I am attempting this time will be far more difficult to complete. However, I am determined to undertake this challenge and these difficult distances because I want to push myself more than I have done before.

This fundraiser will be to complete a triathlon styled challenge, where I will attempt a 500m swim, 5km walk and 7.5km in my wheelchair.

Each part of the challenge will be completed on consecutive days and at different locations.

5km walk - 21st May - Ryton Pools, Ryton, Warwickshire

First Leg of the challenge: " I am very proud to have gotten around the 5km at Ryton Pools, supported by family and friends"

7.5km wheelchair - 22nd May - Draycote Water, Kites Hardwick, Warwickshire

Nerve Tumours UK is on location at Draycote Water in support of Patrick's Triathlon Challenge.

It is great to meet Patrick and friends and supporters - what better way to celebrate World Neurofibromatosis Type 2 Day!

Fellow NF2 Warrior Kian joined the group to support Patrick in today's 2nd leg 7.5km in his wheelchair, maybe also giving Patrick some swimming tips ahead off the 500m swim in tomorrow's final leg of the triathlon challenge.

500m swim/ 20 lengths - 12th June - The Queen's Diamond Jubilee Centre, Rugby, Warwickshire

"It was a tough challenge yesterday but had my dad swimming with me and the rest of my family supporting from the sidelines which pushed me on to reach the end"

Not only that but I have always wanted to push the message that no matter your level of skill or ability you can always do more than you think, more than others think you can. This was something I used to struggle seeing (and some days I still do) but after completing my last fundraiser challenge it made me realise your capabilities expand further than what you or others can see. Before completing the challenge last year, I thought my physical capabilities were that I could just about walk around my local park once or twice but now I know my capabilities are greater than just what I have done before.

This challenge will test my capabilities and I really hope that it will motivate others to test theirs too. Alongside this, I also want to raise awareness for Nerve Tumours UK and fundraise for the medical research, support and overall understanding of these conditions which hopefully one day leads to a cure of this life ruining condition.

If you wish to learn more about Neurofibromatosis, please contact me (via info@nervetumours.org.uk) and ask anything you want to know – some people find it difficult to ask people with disabilities questions about how their condition affects them but that is the only way we will be able to become more inclusive and supportive. So NEVER be afraid to ask questions about how disabilities impact someone’s life.

"I am really excited (and also quite nervous) to start this fundraiser challenge but I am determined to complete it and show myself and others that you are not defined by limitations you may have but by breaking barriers and doing the things you want."

– Pat

Patrick's NF Fundraiser last year was featured on BBC Midlands Today. He explains in his own words why it is important to raise awareness for Neurofibromatosis.

Watch the video & BBC Midlands news article below

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