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Join the Butterfly Run

08 August 2019

Join the Butterfly Run

London 22 September 2019 Queen Elizabeth Olympic Park

WHAT IS THE BUTTERFLY RUN?

For the second year running, Cure EB will be hosting Butterfly Run London encouraging people of all abilities to take part and challenge themselves to run, walk, wheel, whatever you can do, to complete a 1k, 5k or 10k race.  A celebration of inclusivity taking place at the Queen Elizabeth Olympic Park London. Support Nerve Tumours UK and Cure EB (Epidermolysis Bullosa)   The event is open to all ages and abilities and part of a family fun day with races and entertainment for everyone including face painting, balloon modelling, sack races and much more. 

 INDIVIDUAL SIGN UP    

• Single adult runner 5K or 10K £25 1K £10 

• Child runner £10 

• Family runners 1K (2 adults, 2 children) £40 

• Family runners 5k (2 adults, 2 children) £65 

• Under 5’s free

Register

The Butterfly Run is hosted by Cure EB

Nerve Tumours UK support the cause of Cure EB and gets involved for the first time this year.  By sponsoring us, you will help support the more than 26,500 people in the UK who have Neurofibromatosis (NF1 and NF2) and Schwannomatosis, and help raise much-needed awareness of these conditions. Do let us know if you signed up by emailing to info@nervetumours.org.uk We are happy to give you a free T-shirt and support your fundraiser. 

Set up your fundraiser

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Jessica’s Amazing Fundraising Efforts

Have a read about the incredible 7 year old fundraising girl who is supporting research into NF1

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See our Christmas Card winning illustration here

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Have a read of Kate's inspiring story including the introduction of her beautiful daughter Esme, who has NF1, into the world.

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Meet one of our Support Specialists Mel Murrell and read about her impressions on her first year in the role

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World At Her Feet

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Arooj Aftab, 22, is an influencer, with NF1, who is known for her baggy fashion style

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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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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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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

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David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

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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

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

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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

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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

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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. 

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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