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Legacies

A GIFT IN YOUR WILL

Provides hope for people with NF.

Nerve Tumours UK is a community of babies, children, teenagers, adults, siblings, parents, partners, carers, nurses, doctors and other allied healthcare professionals. We are more than a charity; we are an expansive family unit, and leaving a gift is so much more than just providing a donation; it is a way of showing you care, while contributing to the crucial support that we provide.

A gift in your Will can help in many ways: to fund and expand our team of Specialist NF Nurses; it can help us provide and expand our collection of resources to educate GP’s and future NF Specialists; it will help us to collaborate with the UK’s leading universities endeavouring in life-changing research projects.

NF, the group name for Neurofibromatosis Type 1, NF2–related-Schwannomatosis and Schwannomatosis, is a genetic condition, that causes tumours to grow on nerve endings. There is a 50% chance of an adult with NF passing it onto their child, but 50% of all cases are de novo, meaning there is no previous family history of the condition. Therefore anyone, and everyone, has a chance of being diagnosed with NF.

We hope this guide will show you what an incredible impact your generosity can have for the NF community, and thank you, in advance, for considering this special way of giving to the Nerve Tumours UK charity (Char Reg. 1078790/SCO45051).

Your Will

After taking care of family and friends, including a gift in your Will to Nerve Tumours UK is an incredible way to support the NF community. There are two main ways to leave a gift to us in your will:

Residuary gifts

A residuary gift is a share of someone’s estate. This type of gift guarantees a fair distribution among all the people you want to benefit.

Pecuniary gifts

A pecuniary gift is a fixed sum of money. If you would like to protect the value of your gift from diminishing over the years, you could also think about index linking the sum that you give to Nerve Tumours UK. 

We always encourage you to give a gift without restricting its usage, because we don’t know where our focus will be in the future. We constantly review need by talking to both the medical profession and patients, so that we put our limited resources to best use and where they are needed the most.  

Professional Advice

When making or updating your Will, we recommend you get professional advice from a solicitor, or other professional will-making service.

However, if you wish to look into things first, further information is available on the UK Government website: https://www.gov.uk/make-will

Planning Ahead

These tips will help you to prepare in advance of the meeting:

  • Think about your assets: Spend time listing the assets you own, their worth and whether you share ownership. You should also think about any debts, and estimate their value, as these will reduce your estate. Consider how and where information about your estate is kept, so you can plan how to give secure access to this.
  • Appoint roles in your Will: Your Executors are the people named in your Will, who will look after your estate after your death. They can be family members and/or friends, professionals or even organisations (like a bank). Your Executors should be people you trust to look after everything and who will carry out your wishes, as specified in your Will. If choosing loved ones to be Executors, it is a good idea to discuss this with them, to make sure they are happy to be appointed.
  •  A specific gift: After considering family and friends, you might also want to think about how your values can live on through supporting causes you care about. If you want to support the NF community, you will need our address and charity number:

               The Neurofibromatosis Association t/a Nerve Tumours UK

               44 Coombe Lane, London, SW20 0LA

               Registered Charity Number: 1078790 ( UK )  and SC045051 ( Scotland )

Validation

Make sure your Will is valid. When you come to sign your Will, you will need to make sure there are two independent witnesses, who can witness you signing the document, and then countersign the document.

Make sure the witnesses are not beneficiaries of your estate, as this will mean their gift becomes invalid.

Other instructions

Have a think about your funeral. We know it isn’t easy, but you may want to consider your wishes for your funeral. We can supply Nerve Tumours UK donation collection envelopes for your funeral, upon request.

If you change your mind

You can change your mind about leaving a gift in your Will at any time, and we will respect your decision.

Personal Data

Any personal information that you choose to give us will be handled securely and confidentially. We will always respect your privacy. You choose the frequency and ways we can contact you, if at all.

An Existing Will

If you already have a will, but wish to update or change it in any way, you can make additional requests, via a codicil. You can download a codicil here:

Download Codicil

A codicil is an instruction that alters or adds to an existing Will.

Nerve Tumours UK Promise

Leaving a gift in your Will is a special and personal decision. That is why we make these promises to you:

  • We believe that your family and friends come first and promise to treat you and your family with courtesy, compassion and respect.
  • We will always be happy to answer any questions, explain our work in more detail, and tell you where you can find further information about how your gift will make a difference to the 26,500 children and adults who are diagnosed with NF and live in the UK.
  • We will use your gift wisely and cost-effectively, so that it has the greatest, and most positive, impact.

We are grateful for every single gift we receive, irrespective of monetary size. Together, we can build a better future for everyone affected by NF now, and for generations to come.

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