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Shine A Light 2022 Success!

18 May 2022

17th May is World Neurofibromatosis Awareness Day

Yesterday, on Tuesday 17th May 2022, we had over 200 buildings and landmarks across the UK & the Republic of Ireland, lighting up in blue, the colour of NF, to Shine A Light on Neurofibromatosis and celebrate 40 years of Nerve Tumours UK.

The global Shine A Light campaign is now in its 8th year and this was the brightest one yet, in our joint efforts to raise awareness. Around the world, hundreds of buildings lit up. Countries taking part included:

  • UK & Republic of Ireland - 204
  • US - 85
  • Canada - 21
  • Australia - 113
  • Italy - 23
  • Portugal - 1
  • Singapore - 6
  • Spain - 39
  • Switzerland 1

A big thank you to every building and landmark and every person who helped us Shine A Light! 

ACC Liverpool

Tower 42, London

The Palace Armagh; Armagh Gaol; Old Town Hall, Banbridge; Craigavon Civic & Conference Centre

The Kelpies, Falkirk

County Hall, Carmarthen

British Airways i360 pod Brighton

Belfast City Hall

Centre:MK, Milton Keynes

Edinburgh Castle

Burnavon Theatre, Cookstown

Whittle Arch, Coventry

Causeway Council

Civic Headquarters, Lisburn

Falkirk Wheel

Guildhall, Portsmouth

Killinchy Non Subscribing Presbyterian Church, Balloo, Newtownards

Leeds Hospital

Ranfurly House, Dungannon

Rochester Cathedral

Spinnaker Tower, Portsmouth

Bridewell, Magherafelt

40 Years - lit up on Tower 42, London

Clacton Pier

Barrow Town Hall

Ely Cathedral

Eton College Chapel

Eton College: Theatre

Mareel Cinema & Music Venue, Shetland

Mareel Cinema & Music Venue, Shetland

Grand Theatre, Swansea

City of Derry Airport

Yvonne Arnaud Theatre, Guildford

Thanks to our NF Community for Shining a Light On NF by raising awareness, taking on our Shine A Light Challenges and helping support the 26,500 with Neurofibromatosis in the UK

Get Involved & help Shine A Light in 2022

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Find out more about the blog and what is concerns 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 Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date.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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OT Sabine Koinig

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Michel Kalamarides MD

Masterclasses in NF: Management Of Plexiform Neurofibromatosis in NF1- Rianne Oosterbrink, Justus L Groen, Karine Lascelles

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Rianne Oosterbrink MD

Justus L Groen MD

Karine Lascelles MD

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

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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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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

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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

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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.

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

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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

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Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

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Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

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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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