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Swimming for World NF1 Day

Swimming for World NF1 Day

Shine a Light - Swimming for World NF Day

Mel Murrell's fundraising page

17 May 2023

Swim

17-05-23 - Update:
I have completed the 17km that I was hoping to do during the month of May. So I have changed the goal post! I have now decided to swim 17 miles which is 1095 lengths of a 25m pool. I completed 680 today so ‘only’ another 415 to go. I have also raised my target to match the number of lengths.

NF is a genetic condition causing tumours to grow along your nerves with possible additional learning difficulties and skeletal abnormalities. It is a complex and life-long condition. Despite approximately 26,500 people in the UK currently diagnosed with NF there is still little awareness and funding for the condition. Nerve Tumours UK provides crucial medical and non-medical support to help those living with Neurofibromatosis live as fulfilling life as possible.

You may or may not known this, but I am one of the two Specialist Advisors for Nerve Tumours UK in the West Midlands.

I last did a fundraise 3 years ago during Covid, when my daughter (who was 18 at the time) and I shaved our heads for Nerve Tumours UK. We raised an amazing £1605.50 thanks to everyone’s support.

So - I have decided this time to do a swim for Nerve Tumours UK as this is not something I have done before. I have decided to swim 17km during the month of May as this is when World NF1 day falls - 17th May. It is also Chromosome 17 that is affected so it seemed a good number to me. Maybe next time I can do it for World NF2 and Schwannomatosis day on 22nd May…

So - 17km works out to be 680 lengths of the 25 metre pool that I swim in. I need to swim four times a week, doing 40 lengths each time, which coincidently is 17 days of swimming. Hence my target is £680.

I know that times are hard at the moment - but if you can spare any pennies or pounds, it really does help - I see that every day that I work with people with NF. So, thank you - I really do appreciate your support.

Mel x

Created by: Mel Murrell on 12/04/2023

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Goal: £1,095.00

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60 Donations

Anon

24/07/2023

Well done, Mel.

£5.00

Stew and Phil

24/07/2023

Not sure if this is for the last swim or the next one! Whichever - well done sweetie and great cause xx

£20.00

Anon

14/06/2023

Well done, Mel.

£3.50

Tom Austin

09/06/2023

Huge congratulations Mel. Amazing achievement. Triathlon next?

£5.00

Rachie and JP

03/06/2023

Mel you have done amazing! you’re so inspirational and we’re so proud of you- Congratulations x

£10.00

01/06/2023

No message provided

£50.00

30/05/2023

No message provided

£20.00

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

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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

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Gareth Evans, MD, University of Manchester, UK

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

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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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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.

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

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

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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

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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

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

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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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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