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Alex’s 12 months of Running

22 July 2021

Alex has completed his epic 12 months of running, racing in 8 out of the 10 planned events as 2 had unfortunately been cancelled. Helping to shine a light for NF across the country by running a truly impressive total distance of over 80km, he successfully completed the races below:

  • Chester Marathon October 3rd, 2021 (3hr 57min 29 sec)
  • Aintree 10km July 21st, 2019 (43.05) finished 31st.
  • Wigan 10km September 1st, 2019 (43.33) finished 167th
  • Southport 10km September 22nd, 2019 (42.37) finished 91st
  • Rainford 10km October 6th 2019 (43.42) finished 29th
  • Beat the reaper 10km October 20th 2019 (40.50) finished 8th
  • Mad Dog 10km February 9th, 2020, cancelled due to storm Ciara.
  • Chester 10k March 8th, 2020 (40.17) finished 101st (4562)
  • Chester half marathon September 19th 2021 
  • Southport half marathon June 28th, 2020, finished 139th (1088)
  • Chester 10k July 18th finished 150th (2233)

Alex took on this challenge to help support the wider NF community as both himself and his daughter Bella have NF1.

Alex took on this challenge to help support the wider NF community as both himself and his daughter Bella have NF1.

"I was diagnosed with NF1 at an early age in what was a challenging time for myself and my parents. As I have got older, I've had several operations to remove lumps from my arm and knee. "

–

In December I welcomed my beautiful daughter with my wife Sarah. I had a feeling from day one that she had the NF gene due to the presence of her birthmarks, this was later confirmed after a number of blood tests.

Alex has always been fond of running, finding it a great way to get fit and stay motivated and the perfect way to help raise funds to support Nerve Tumours UK.

I want to do these runs to help raise awareness for NF and to further support the work Nerve Tumours UK do, therefore ensuring a bright future for my daughter and everyone else who has NF.

Support Alex’s incredible running efforts

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Jonny’s Story

Jonny has chosen to open up and share his incredibly brave battle with Cancer over the past year, find out more here:

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James on Tour

James Wiggin is taking on the Tour de France on behalf of Nerve Tumours UK – or at least a part of it.

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Let’s Go Regional/ Let’s Go Outside

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Funny Peculiar

Peculiar Productions has chosen to donate all their proceedings to NTUK this year! Find out more:

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Christmas Card Competition 2019

Check out this year's Christmas Card Competition and how to enter

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Read about the new lanyards being given out at Heathrow, Sainsbury's and Gatwick to help support those with disabilities

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NTUK attends Small Charity Week

Nerve Tumours UK attended Small Charity Week, find out more about the week and why we attended here:

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Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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

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Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

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

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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

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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

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

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

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

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

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

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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

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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

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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

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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

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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

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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