Helpline 07939 046 030
Freephone 0300 102 17 22*

Deacons Marina’s fun filled fundraiser for NTUK

07 August 2019

Deacons Marina's fun filled fundraiser for NTUK

Deacons Marina is a place where people can store their boat either on the water to take out sailing or on land for repairs/refits.

About 11 years ago they began running extremely successful and enjoyable summer parties for their customers, with their aim being simply to provide them with a fun evening, a great chance for all to chat and get to know each other, make friends to go sailing with and just enjoy some great music, great food and a complimentary bar. However, these parties are not only for their customers to enjoy as they nominate a charity and support their cause by asking all in attendance to donate at the end of the day.

This year the Deacons Marina Team, under the shining sun, put on a massive BBQ in aid of NTUK! On top of the BBQ were the Fat Cat Soul Band who put on an impressive display in which they got everyone up dancing!

The party this year was extremely well received by all in attendence. The reasons for choosing NTUK as their chosen charity was largely down to  Sarah, who works in Force 4 Chandlery on site, as she asked as to whether the money raised could go to NTUK in support of her god daughter who suffers from NF1. 

Everyone at NTUK would like to thank the whole Deacons Marina team for putting on what looked like such an incredible event!

Smiles all round

Filter News

Search by keyword
Filter by Date
Category
Reset

Jensen’s NF1 story

Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future

Read More

TSL’s Charity of the Year

Specialist Nurse Tracey Kenyon launches TSL’s corporate funding to introduce NTUK & welcome guest of honour, 2 year old Evie

Read More

Online – Accessibility – We have the tools to help!

The NTUK website has accessibility tools to give you easier access to online & digital content

Read More

My life with Pheo

This story, written by someone with NF1, describes symptoms leading to a phaeochromocytoma diagnosis

Read More

Resources Survey: Initial Diagnosis 2023

We received many responses to our survey asking what would you have found helpful after your initial diagnosis

Read More

Community Fundraising Call Out

Calling all community fundraisers - we need your help, please!

Read More

Owen family Awareness Event

The event featured guest speaker Prof. Meena Upadhyaya OBE, Member of our Board of Trustees & Medical Advisory Board

Read More

Running for Wilbur

Tim is running the Guildford 10k in October, to show support to his son Wilbur who has NF1

Read More

Alice’s NF studies

Alice is researching healthcare experiences of individuals with NF1 for her Genetic & Genomic Counselling MSc

Read More

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.

Website by Optima.

0 seconds of 1 hour, 6 minutes, 7 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:06:07
1:06:07
 

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

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

0 seconds of 57 minutes, 6 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
57:06
57:06
 

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

0 seconds of 58 minutes, 51 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:51
58:51
 

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

0 seconds of 58 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:14
58:14
 

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

0 seconds of 57 minutes, 40 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
57:40
57:40
 

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

0 seconds of 58 minutes, 9 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:09
58:09
 

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

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

0 seconds of 1 hour, 2 minutes, 16 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:02:16
1:02:16
 

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

0 seconds of 51 minutes, 45 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
51:45
51:45
 

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

0 seconds of 8 minutes, 56 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
08:56
08:56
 

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.

0 seconds of 10 minutes, 4 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
10:04
10:04
 

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.

0 seconds of 8 minutes, 6 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
08:06
08:06
 

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.

0 seconds of 58 minutes, 11 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:11
58:11
 

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

0 seconds of 1 hour, 3 minutes, 36 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:03:36
1:03:36
 

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

0 seconds of 1 hour, 2 minutes, 3 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:02:03
1:02:03
 

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

0 seconds of 1 hour, 21 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:00:21
1:00:21
 

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

0 seconds of 1 hour, 8 minutes, 58 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:08:58
1:08:58
 

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

0 seconds of 1 hour, 28 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:00:28
1:00:28
 

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. 

0 seconds of 58 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:14
58:14
 

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

0 seconds of 55 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
55:14
55:14
 

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

0 seconds of 25 minutes, 49 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
25:49
25:49
 

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