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World NF 2 Day May 22nd 2020

19 May 2020

For the second year running Nerve Tumours UK celebrates World NF2 Day on May 22nd. Emily Owen, Member of our Board of Trustees and affected by NF2 will take over our social media for the day. This year's celebration will reflect highly on the impact of the current crisis on those affected by NF2. We at Nerve Tumours UK feel that the voices of those affected by NF2 do not get kudos they deserve being categorised as a rare disease on World NF Day and we are hereby providing a specific forum and day for those affected. 

Today On World NF Day - NTUK is going Theatrical 

Neurofibromatosis Type 2 is a rare genetic disorder that is caused by another genetic “spelling mistake” in a single gene on chromosome 22. The misprinted gene will be present at birth, but signs of the condition do not usually appear until the teenage years, twenties or later. NF2 can be passed on from a parent OR it can start in a family with no previous history of the disorder. It occurs in 1 in 30,000 of the population but Nerve Tumours UK is here to help.

Emily Owen is a Member of our Board of Trustees & an established author.

We speak to her about how NF2 has affected her daily life and how the current Covid19 crisis & lockdown has created special challenges for both herself personally & for Nerve Tumours UK. 

""I joined the board some years ago as I wanted to raise awareness of NF and its realities. I have received such support from NTUK (under various names!) over the years, particularly at the start of my NF2 journey, and I wanted to give something back if I could. As well as living with NF2, and all that brings, I write. I published my memoir, Still Emily, and I also write Christian devotional books.""

– Emily

Emily Owen who has NF2 on Life in Lockdown

I was due to have surgery, which had to be cancelled as the country went into lockdown. Who knows when that surgery will happen now.

A surprising effect at the beginning of lockdown, was that I felt more deaf. I’m still not entirely sure why, even as I type this. Suddenly, I could no longer text a friend and say, ‘shall we meet for lunch?’, but neither could I pick up the phone and chat instead (I need to lipread).

I have since discovered possibilities of video-calling. If it is one to one, and the person I am speaking to is VERY patient, I manage better than I would have thought.

Alongside writing, which has not really been affected by lockdown (I don’t tend to write when surrounded by people!), I speak, in various public settings, and of course that has been affected. I miss the face-to-face contact and dialogue I am used to at those events.

‘NF2 invites me to exist. Not only to exist, but to do so in a world dominated by itself. I want to more than exist! I want to live. And, in order to live…I need to accept. For me, refusal to accept the circumstances that I can’t change is merely existing. Refusal becomes a barrier, stopping me living the life beyond NF2 that I know is there. But, you know what? When I accept the things I can’t change, I might just glimpse rainbows.’ (Still Emily)

I have a little-known hashtag, which is #EverydayRainbows. It means finding something good in every day, however hard it is to see.

When I was first diagnosed with NF2, I had no idea what it meant, or where to turn. Thankfully, I was pointed to the charity, and helped to navigate this new world that had an unpronounceable name. I can’t say the charity magically turned things into an easy ride – I still had/have to get through the NF maze – but they made it so much less hard.

Charities like Nerve Tumours UK being solely dependent on public funding do face hard times in the current crisis. If I had to point to two struggles for small charities, such as ours, I would say ‘Funding’ and ‘Awareness’. The challenge for us is to make ourselves known.

For me, NF2 Day is not about NF2, it is about the people affected by NF2. The people who overcome the challenges and limitations of NF2, every day, and do it all again tomorrow. Each one of those people is the reason we celebrate World NF2 Day. So, why is it important we celebrate? Because of the people we celebrate.

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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

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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

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

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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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Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

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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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