Helpline 07939 046 030

Thinking Forward to 2021 - A Message from our Charity Director

09 December 2020

Dear Friends & Supporters,

If this time last year, anyone had described what 2020 was going to be like, we would not have believed them. In many ways it has been truly awful, so many losing their lives, the heartache of seeing the elderly stuck in care homes unable to see their families, people being in hospital without their families, lockdown, the effect on the economy, the list can go on and on.

One of the most important things from any disaster in life is how you react and then how you learn from the experience. In March, we were immensely worried about the impact on the charity and about how we could provide support for people. Make no mistake, we have been hit very hard by the pandemic, but we were able to adapt quickly, we were able to offer virtual support to the community and by putting a number of our plans on hold, we were able to more or less ride out the initial storm. I do, however, think that the next six months will be very difficult, we have a long way still to go. Industry experts tell us that after the banking crisis of 2008, it took a decade until the charity sector returned to pre-2008 levels. So, we will have to wait, and hope, and see, and adjust. We have much work to do, together.

But let’s not forget, there have been positives, and we have many to thank…our medics, scientists, people who kept the country ticking over while the rest of us hid away. We should be immensely grateful to each and every one of them, no matter what sector or position they hold. Lessons should be learnt that every member of society can have a positive impact in some way, they just may be different ways.

In 2020, the meaning of the word, “community” expanded and was clearly demonstrated. Clapping for the NHS, creating support bubbles, the national volunteer programme, to name but a few. The pandemic certainly brought out the best in our NF community as witnessed so many times in our support groups and across social media. 

We have also learnt that we can adapt, so many now work from home. Here, we have learnt that we can support some of the NF community from afar, in a more efficient manner. We do appreciate that not everyone has access to broadband, although many seem to think everyone does!!

So, yes, we can and must learn to adapt, but adapt to different situations, and to be sensitive to different requirements. As a charity, we are already working on this, and I am so grateful to all of you who have taken the time to send feedback.

As I said earlier, we had to react very quickly to minimise our potential loss, and so put many plans on hold, but as you will have seen over the last couple of weeks, we are slowly moving back on track. We have filled the vacancy in Southampton and announced a new post in Sheffield and I am delighted to welcome Tracey and Clare to the team.  

With lessons learnt, let us look forward to 2021, to a hopefully wiser and kinder world. A world in which we can start socialising and mixing again, not just for our own benefit, but to help those who really do need support and for those who provide very vital services.

Thank you so much, for all the fantastic support you have given to the charity in this difficult year, and with my very best wishes to you all for a “Very Happy Christmas”, and an exceptionally wonderful 2021!

Karen

Filter News

Filter by Date
Category
Reset

Today is Giving Tuesday

Call out by Karen Cockburn, Charity Director, to donate and support the NF Community

Read More

Runderpants fun run

Get your Runderpants here! Set up a fun run wearing some special fundraising pants

Read More

Avastin Side Effects

Jo highlights Avastin side effects, from experience of her son Oscar's treatments, plus shared testimonies from others

Read More

2023 Awareness Campaign

Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.

Read More

Disclosing and explaining visible differences - CAR Workshop

Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebeca Rennison

Read More

Jo Ward’s Avastin Blog

Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey

Read More

World Mental Health Day 2023

NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services

Read More

CAR Research visible difference experiences during recruitment

Research participants required, find out more and take part

Read More

NF Academy 2023 - Ella’s Blog

Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe

Read More

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