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Shine A Light - Swimming for World NF Day

24 May 2023

Mel is going to extra lengths to fundraise and raise awareness.

Monday 1st May is the start of Mel's one month of taking to the water for the NF community.

Mel, one of our two Specialist NF Advisors in the West Midlands, has been with Nerve Tumours UK since October 2017.

Mel & Carolyn support and look after over 3200 people in their region, who have been diagnosed with NF1, NF2 and Schwannomatosis.

Mel works at Birmingham Women's Hospital NHS Foundation Trust. She has been in Nursing for over 30 years and recently qualified as an Acupuncturist, completing a 3 year degree - utilising her knowledge to help her NF patients. 

Melanie covers the following regions: Warwickshire, Worcestershire, Herefordshire & Coventry.

She joined our 2022 World NF Month Awareness Campaign

40 years of NTUK raising awareness and supporting the community

"It still amazes me how many people have never heard of Neurofibromatosis. I have spent lots of time over the last year speaking to GPs who do not understand the condition and informing them of the implications that this condition has for their patients. I also have informed lots of friends and people who I meet about the conditions, as raising awareness of Neurofibromatosis is so important."

– Mel

Mel's last fundraiser was 3 years ago during Covid: the NTUK Easter Egg Challenge in 2020, when she and her daughter Mia shaved their heads for Nerve Tumours UK, raising an amazing amount thanks to the support of the community.

This year's fundraiser is a swim for Nerve Tumours UK. She has 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: 17km works out to be 680 lengths of the 25 metre pool, swimming four times a week, doing 40 lengths each time, which coincidentally is 17 days of swimming. 

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. Maybe next time I can do it for World NF2 and Schwannomatosis day on 22nd May…

Mel "

Follow Mel's progress below

 

Day One: 1.7km

Day Three: Total so far 140 lengths and 3.5km

Swim 3: 2km swum, making the total 5.5km

Swim 4: 1km, making the total 6.5km

"The rate I’m going I might end up finishing on 17th May which is now what I am aiming for!!"

– Mel

Just finished swim number 5

102 lengths = 2.55km. Making a total of 9km completed. 360 lengths completed so far so over half way now. Still on track to finish on 17th May 🤞

Just a ‘quick’ swim before work today! 54 lengths and another 1.35km. Total swam is now 10.4km

Swim 7 completed. 3km today - 120 lengths. Total swam is now 13.4km

Swim number 8 completed. 80 lengths bringing the total to 616 and another 2km making the total 15.4km.

So - on Wednesday, World NF Day, I’ll hopefully swim the remaining 64 lengths and 1.6km

I did it!

For some reason though my swim tag thought I did 65 lengths which I know isn’t right as I never do odd lengths!

"Now wondering if I can do another 414 lengths to make it 17 miles swum in May… "

– Mel

Post swim photos with my supporters!

"So - I have updated my goal and changed my swim lengths from km to miles. This means another 415 lengths, which should not be a problem!"

Mel decided to go again, she has 6.5 miles and 349 lengths left, to make it 17 miles swum during May!

New chart for the remaining lengths

Swim number 11 complete. 80 lengths total making a total of 826 swum.

269 to go. I’ve now swum 12.8 miles so only another 4.2 miles to go.

Just a quick swim before work today. Another 48 lengths which is another 3/4 of a mile.

So, another 161 lengths to go which is only 2&1/2 more miles

Another 48 lengths and 3/4 of a mile done

113 lengths to go and 1 3/4 miles

Another 66 lengths and just over another mile (I lost count again!).

I now have 107 lengths left which is 1.7 miles

Another 66 lengths - just over a mile done.

Last swim hopefully tomorrow morning which is only going to be 41 lengths.

Well I did it!

17 miles (27.4km) and 1096 lengths of the pool completed this morning.

Post swim photos with daughter Erin, and Charlie the dog

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