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Holst Singers Christmas Concert

A festive treat of traditional and contemporary seasonal music and readings

Friday 13th December 2019, 7.30pm, St Pancras Church, London

The annual Breathing Matters UCLH Charity Christmas Concert given by The Holst Singers will take place at St Pancras Church Euston Road London NW1 2BA on Friday 13th December 2019 at 7.30pm. Book your tickets now for a feast of seasonal music and a most wonderful start to the festive season.  There will be wine and mince pies available before and after the concert and during the interval. The concert will feature a mix of well-known traditional carols as well as more contemporary Christmas music, audience carols and seasonal readings.

The Holst Singers is one of Britain’s foremost choirs, described by the BBC as “a leading chorus on the international stage”. In concert, the choir is renowned for dramatic and engaging performances, described by The Times as “interactive concert going at its most revelatory” while the BBC Music Magazine states that “The Holst Singers sing with a spell bounding sense of atmosphere and crystal-clear textures….. supremly musical.

Our guest readers are Charlotte Green and Garry Richardson. Charlotte Green has been a familiar voice on the radio for many years, including as a news reader for the Radio 4 Today programme, the presenter for the comedy programme, The News Quiz and currently as the reader for ‘Quote.. Unquote’. In 2013, she joined Classic fm for five years and BBC Radio 5 Live, where she announces the football results. Garry Richardson has been presenting on Radio 4 Today programme for 38 years and is the longest serving member of the team. Garry Richardson during his long broadcasting career has interviewed many famous people, including President Bill Clinton and Nelson Mandela.

Tickets £25

For further information and tickets, please contact Jane Walker either by telephone 01732 366346 or by email missjanewalker@hotmail.com

Tickets are also available online by clicking this link https://bmchristmasconcert.bpt.me

Tickets will be available from Brown Paper Tickets until the afternoon of 13th December. Tickets will also be on sale on the door from 6.45pm.

Donation received from Profile Pharma, towards the costs of staging this concert

All profits will go towards bronchiectasis research at UCL Respiratory

ILD Roundup: What you have helped us achieve in 2019

Breathing Matters was established 8 years ago with the aim of finding better treatments for interstitial lung diseases (ILD) and lung infections. Since that time, we have raised money and awareness into these often neglected conditions. Looking back over the 8 years, we have come much further than any of us would have anticipated in the beginning. We have established new theories on the development of ILD or lung fibrosis and the role of the immune system in particular the clotting cascade and neutrophils. We also have better ways of monitoring and diagnosing these conditions and our novel nuclear medicine imaging programme and relatively non-invasive lung biopsy service are the first in the UK. We could not have achieved any of this without the support of our funders and our patients, so thank you all. This review highlights our achievements to date and our future directions in ILD.

Relatively Non-Invasive Lung Cryobiopsy (2014-ongoing):

Objective: To find a less invasive and better diagnostic tool for every patient with ILD

Main benefactors:     Teresa Timberlake and family – equipment purchase + Lawrence Matz Memorial Fund – Clinical Fellow                

Breathing Matters investment: £52,000 salary; £36,000 (total £88,000)

Leveraged funding: £347,000

Outcomes:

1.      Novel cryobiopsy service, first in the UK including training other centres; presentations at European Respiratory Society (2015), British Thoracic Society (2014-6); publications: review 2016; papers in preparation:

2.      Completed Lung-INHALE study Study (2019) to assess inhaled drug deposition using CLB.  This will allow drug companies to develop inhaled therapies for IPF and be sure that they are reaching the part of the lung where they are needed. The use of inhaled therapy will avoid some of the side-effects of anti-fibrotic drugs that are taken as tablets.

This project was developed in discussion with a family whose mother had had a surgical lung biopsy towards the end of her life. Her experience was such that her family felt that a less invasive alternative must be available. Dr Theresia Mikolasch, the Lawrence Matz Clinical Fellow, took this on for Breathing Matters to find out about and train in new techniques. Dr Mikolasch then returned to UCLH and established the first and only UK cryoscopic lung biopsy (CLB) service. CLB is a new way of obtaining larger lung biopsies using a flexible bronchoscope passed into the lungs through the mouth. The patient is sedated and surgery is avoided. This is not only better for the patient than a surgical lung biopsy, but also provides a solution to the lack of biopsy samples available for scientific research.  GSK were so excited by the technique that they awarded Dr Mikolasch and Dr Porter a grant of over £300,000 to carry on the service for an additional 3 years.

Novel FDG-PET Imaging to Predict Prognosis and Response to Treatment in ILD (2014-ongoing):

Objective: To find a new test (biomarker) that will enable us to predict prognosis and response to treatment in each individual patient.

Breathing Matters investment: £34,766

Leveraged funding: £173,850

Funding from BLF for clinical trial of FDG-PET in post transplant bronchiolitis £40,000

Outcomes: Novel FDG-PET imaging programme in ILD – first in the UK; presentations at American Nuclear Medicine Society (2015), British Thoracic Society (2015-6); American Thoracic Society (2017)

Publications:

Pulmonary 18F-FDG uptake helps refine current risk stratification in idiopathic pulmonary fibrosis (IPF). Win T, Screaton NJ, Porter JC, Ganeshan B, Maher TM, Fraioli F, Endozo R, Shortman RI, Hurrell L, Holman BF, Thielemans K, Rashidnasab A, Hutton BF, Lukey PT, Flynn A, Ell PJ, Groves AM.  Eur J Nucl Med Mol Imaging. 2018 May;45(5):806-815. doi: 10.1007/s00259-017-3917-8. Epub 2018 Jan 16.

Synergistic application of pulmonary 18F-FDG PET/HRCT and computer-based CT analysis with conventional severity measures to refine current risk stratification in idiopathic pulmonary fibrosis (IPF).

Fraioli F, Lyasheva M, Porter JC, Bomanji J, Shortman RI, Endozo R, Wan S, Bertoletti L, Machado M, Ganeshan B, Win T, GroveEur J Nucl Med Mol Imaging. 2019 Sep;46(10):2023-2031s AM.

Next steps:

1.      FDG-PET will be used as a response biomarker to see if we can detect which patients benefit from anti-fibrotic therapy and which patients do not benefit. We are applying to the NIHR for a £400,000 grant to carry out this study:

2.      We and others have shown that patients with IPF are more prone to blood clots. We have some very exciting work looking at anticoagulation in IPF.  We have completed 2/3rds of the study and will then publish our findings later in 2020 (see below).

Interstitial lung disease (ILD) consists of a heterogeneous group of diseases with varying amounts of interstitial inflammation and fibrosis. Survival in the most severe form of lung fibrosis, idiopathic pulmonary fibrosis or IPF, is particularly poor; however, there is heterogeneity in outcome. Some patients gradually deteriorate; some undergo stepwise progression, whilst others decline rapidly. Moreover, much of the prognostic data heralds from an era when the criteria for diagnosing IPF were less well and differently defined than at present.  There is a definite need to find prognostic biomarkers to predict outcome in IPF patients

Positron emission tomography (PET) offers the ability to non-invasively investigate cellular metabolism in vivo. PET studies in animals have yielded valuable insights into the biology of IPF and ILD and there is potentially encouraging evidence that PET may aid the development of therapeutic interventions to treat these debilitating conditions. It has been recently demonstrated that 18F-Fluorodeoxyglucose (18F-FDG) PET signal is consistently raised and can be objectively measured in patients with IPF. Moreover, these PET signals are shown to be stable and reproducible.

We have shown over several years and imaging hundreds of patients with ILD that the baseline measures of pulmonary 18F-FDG PET signal to predict survival in patients with IPF compared to other more established prognostic data.  We have also shown that combing PET data with our clinical scoring system based on gender, age and physiology (GAP) data (“PET modified GAP score”) refined the ability to predict mortality.

Future studies are to investigate the role of FDG-PET scanning in other ILDs, such as Rheumatoid arthritis (see below) and systemic sclerosis.

Rheumatoid Arthritis (RA) Associated ILD (2018-ongoing):

Objective: To discover why 1:5 patients with RA will develop lung fibrosis and what novel treatment can prevent disease progression.

Breathing Matters investment: £34,766

Leveraged funding:  £102,766

Outcomes: Novel biomarker test for neutrophils extracellular traps (NETS) in ILD in discussion with UCL business for further development; presentations at American College of Rheumatology (2014-6); British Thoracic Society (2016); British Rheumatology Society (2014-6);

Publications:

The lung in a cohort of rheumatoid arthritis patients-an overview of different types of involvement and treatment. Duarte AC, Porter JC, Leandro MJ. Rheumatology (Oxford). 2019 Nov 1;58(11):2031-2038. doi: 10.1093/rheumatology/kez177.

Autoimmune rheumatic disease IgG has differential effects upon neutrophil integrin activation that is modulated by the endothelium. Khawaja AA, Pericleous C, Ripoll VM, Porter JC, Giles IP. Sci Rep. 2019 Feb 4;9(1):1283. doi: 10.1038/s41598-018-37852-5.

Next steps: To work with a group in Cold Spring Harbour, USA to see if inhibiting NET formation prevents fibrosis.  To see if the presence of NETs in the blood can predict whether patients will develop lung fibrosis.

RA is a chronic debilitating disease estimated to afflict 13% of the world population. Around 10% of patients with RA will develop an ILD that is very similar to the lung fibrosis that we see with IPF. Dr Akif Khawaja was funded by Rosetrees and UCL to carry out a PhD into the aetiology of RA-ILD. His work proposed that RA is a disease that starts in the lung. That chronic lung damage caused by smoking, infection and other insults causes the immune response to recognize the lungs and joints as “foreign” and attack them causing chronic damage. His work implicated neutrophils in this process and, in particular, the p38 MAPkinase pathway.  We are hoping to develop a new test using blood or sputum to detect early activation of neutrophils in the lungs of patients at risk of ILD.  This same test may act as a biomarker for prognosis and to detect early response to novel therapies.  

A Trial of Anticoagulation in IPF (2016-2020):

Objective: To assess the potential of anticoagulation as a treatment for IPF

Main benefactors: The Hulme Family – The Mark Hulme Clinical Fellow

Breathing Matters investment: £40,000

Leveraged funding:  £100,000 from UCL/H NIHR BRC

Next steps: A trial of anticoagulation with heparin in IPF using FDG-PET as a response biomarker

At present, we do not know the exact cause of idiopathic pulmonary fibrosis (IPF), although research has identified lots of processes that are likely to be involved. Currently, we believe that microscopic injury occurs in patients with IPF and then the body responds to repair this, but does so in a way that leads to more damage and scarring. One of the processes involved in repair pathway is coagulation, which minimises blood loss when tissues are damaged.  Patients with IPF are at increased risk of blood clots and this can reduce their already low life expectancy. We also think that these blood clots drive the worsening of their lung disease. Researchers have shown that clotting is over-activated in the lungs of IPF patients and we want to investigate how reducing this might improve the disease.  Based on work carried out at UCL, we believe that anticoagulation with heparin is safe and may even prevent disease progression in IPF. Patients will be asked if they would be willing to take the oral anticoagulant dabigitran for 3 weeks, to reduce clotting. We will perform blood tests and FDG-PET scans before and after taking the drug to judge response.  If we find that the heparin is safe and the patients report some improvement that we can confirm with questionnaires lung function and FDG-PET scans, then we will progress to leverage funding for a much bigger trial.  We have completed 2/3rds of this study and have analysed the results. We have found a small effect and the suggestion is that we look in a few more patients that we will recruit early in the New Year.

A Trial of a Novel Treatment (Compound X) in IPF (2019-2022):

Objective: To assess the potential of Compound X as a treatment for IPF

Main benefactors: NIHR BRC £100,000

Breathing Matters investment: £40,000

Leveraged funding:  Application to British Thoracic Society, Wellcome Trust and NIHE.

Next steps: A trial of Compound X in patients with IPF

Assessing effectiveness of treatments for IPF is difficult as often they do not make patients feel better, despite decelerating disease. Currently, we are guided by regular breathing tests and special imaging of the lungs, which are insensitive to changes and may be unpleasant for patients. We need better tests like a simple blood test to predict the prognosis for individual patients, and their responses to treatment. Causes of IPF are unknown, but we have found that specific white blood cells, called neutrophils, are increased in the lungs of patients with IPF. We also found that the more neutrophils in the lungs, the faster the decline from IPF. This suggests that neutrophils are actively worsening IPF. Neutrophils produce a substance called X that we detect in the bloodstream of patients with IPF. No-one has investigated whether X causes or worsens IPF. We plan to quantify X in the blood and lungs of patients with IPF. By comparing X levels in patients with IPF against healthy individuals, this will establish whether X is increased in patients, whether high levels of X indicate more severe IPF and whether treatment for IPF reduces X levels in patients that respond. These results will ultimately help design future clinical trials testing Compound X that is able to block X as a treatment for IPF.

Understanding Mucin 5 B and Its Role in IPF (2019-2022):

Objective: To assess the role of Muc5B in IPF

Main benefactors: NIHR £300,000

Breathing Matters investment: £40,000

Next steps: Further investigations in patients with IPF of the effects of blocking neutrophil activation

Publications: A review on mucins in lung disease has been submitted and we hope this will be published in 2020.

It is unclear what causes IPF, but it is thought to be a response to damage to the lining of the airways (epithelium) following an unidentified injury. This results in the

formation of excessive scar tissue which disrupts the delicate architecture of the lung and ultimately death follows from respiratory failure.  We have shown from research previously sponsored by The Rosetrees Trust that a certain type of white blood cell which is specialised in fighting infections called neutrophils may play a role in PF. We have found that neutrophils are increased in the blood and lungs of patients with PF and the more neutrophils you have, the worse the individual’s outcome.  In addition, it is recognised that you are more likely to develop IPF if you have a commonly occurring genetic mutation that causes increased mucus production by the lung epithelium, and in particular a protein called Mucin or MUC5B that gives sputum its stringy quality. We propose that the overproduction of MUC5B may stress the epithelium, making it more prone to damage and scarring. In addition, the increased MUC5B will attract and activate neutrophils from the blood and these white blood cells can cause further damage. We hope that, by identifying treatments that limit the number of neutrophils moving into the lung, we can protect patients from developing PF or from PF progressing. We will use neutrophils and epithelial samples form patients and healthy volunteers to compare differences and see how the MUC5B affects neutrophil activation in the lung. Lastly, we plan to block neutrophil activation and recruitment with a specific treatment that is already being developed for other indications and has an excellent safety profile. If our results are encouraging, we can take this medication into an early clinical trial for patients with IPF.

We have also shown that we can detect very early changes in the CT scans of patients that make too much Muc5B and this might be a very early sign, even before the scan looks abnormal, that these patients are at risk of lung disease.

If you are a UCLH patient and want to get involved in any of the above studies, please discuss this with your consultant.

Black Friday Sale – Stunning New Fundraising Events

Hot off the Press!!

Global Adventure Challenges, who we work with, have released their 2021 events and they have SIX new challenges for you – plus they have BLACK FRIDAY offers next week!

 

Below are the new challenges which are amazing and diverse – why not book up before they’re snapped up:

Global Adventure Challenges are giving supporters a whole week to save 25% on their registration fee for selected iconic adventures, including their newly launched 2021 events!

Make sure you keep an eye on their website and Facebook pages for more offers throughout Black Friday week!

Have fun, take the challenge and raise vital funds to support our research – thank you.

 

 

 

 

 

World Pneumonia Day – 12th November

Pneumonia is a major cause of death among all age groups, resulting in 1.4 million deaths in 2010 (7% of the world’s yearly total) and was the 4th leading cause of death in the world in 2016, resulting in 3 million deaths worldwide.

Pneumonia is an infection of the deep parts of the lungs called the alveoli. This is where oxygen is transferred into the blood from the air, but during pneumonia the alveoli are invaded by bacteria or viruses which then causes the alveoli to fill up with fluid and white cells in an attempt by the body to kill the bugs. Alveoli filled with fluid and cells is called consolidation and shows up on an X-ray, and is also why patients with pneumonia become breathless as there is less lung available to transfer oxygen into the blood. If the pneumonia spreads to affect the edge of the lung, then it can inflame the membrane that covers the lung called the pleura. This causes a lot of pain, especially on breathing in, and is called pleurisy.

Recent research by Professor Brown’s infection research team at UCL Respiratory has had three research papers published which describe new findings about the commonest causes of pneumonia.

Streptococcus pneumoniae interacts with humans to cause infection. They describe the mechanisms by which the human immune system recognises the presence of S. pneumoniae and then responds to cause inflammation that is necessary for controlling infection. They are basic science research which do not directly feed into clinical care, but help us better understand how diseases like pneumonia develop and could therefore be prevented.

  1. Weight CM, et al. Epithelial control of colonisation by Streptococcus pneumoniae at the human mucosal surface Nat Comms 2019 10(1):3060.
  2. Javan RR et al. Prophages and satellite prophages are widespread among Streptococcus species and may play a role in pneumococcal pathogenesis Nat Communications, in press 2019.
  3. Periselneris J et al. Relative contribution of extracellular and internalised bacteria to early macrophage pro-inflammatory responses to Streptococcus pneumoniae. mBio, in press 2019.

If you would like to support this work, please donate to: https://www.justgiving.com/campaign/breathingmatters

 

Coronation Street Pulmonary Fibrosis Storyline, November 2019

We are so happy to see a storyline on pulmonary fibrosis in Coronation Street in November 2019 (the storyline starts 11th November).  Breathing Matters’ Medical Director, Professor Joanna Porter, was honoured to be asked to be medical advisor on this script so it should be authentic!

This is such a fantastic platform to showcase this devastating disease which is on the increase in the UK, and to raise much needed awareness and hopefully more investment in research for a cure and better treatments.

You can see a preview of the storyline here: https://www.itv.com/coronationstreet

Happy watching!

 

Newsletter – Autumn 2019

Autumn 2019 Newsletter – Quiz Answers

 

Q: Which year did England last win the World Cup?

A: 2002 – sadly not 2019!

 

Q: What is the name of the World Cup trophy?

A: Webb Ellis Cup

 

Q: In what year was the first Rugby World Cup?

A: 1987

 

Q: Who won the first Rugby World Cup, and who were runners-up?

A: New Zealand were the champions.  They defeated France 29-9

 

Q: Who has scored the most tries in a Rugby World Cup?

A: Bryan Habana and Jonah Lomu share the record for the most tries (15) in Rugby World Cups, and share the record for most tries in a single World Cup tournament (8) with Julian Savea 

 

Lung Infection Research Update

Prof Brown’s team has had two papers on bronchiectasis published recently.

The first describes the rapid development of bronchiectasis in patients who have weakened immune systems due to haematological disease.  This includes information for around 80 patients about bronchiectasis caused by haematological disorders such as lymphoma, myeloma  or leukaemia. This is the largest number of these patients described in the medical literature, and is important as it makes other doctors aware that bronchiectasis develops very quickly in these patients and causes a lot of ill health; better awareness of the problem will make doctors much better at recognising these patients and referring them to specialist centres, such as UCLH.

The other paper on bronchiectasis uses computers and CT scans to measure the exact degree of the dilatation of the bronchi in patients with bronchiectasis.  The more dilated the bronchi the worse the bronchiectasis, but at present we can only really measure this by eye just looking at the CT scans, which is not very accurate. Using computer software to give an actual measurement for the severity of bronchial dilatation would be a significant breakthrough as it would allow us to follow what happens to a particular patient over time, and rapidly identify if things are getting worse.

Three research papers have also been published which describe new findings about how the commonest cause of pneumonia.

Streptococcus pneumoniae interacts with humans to cause infection.   They describe the mechanisms by which the human immune system recognises the presence of S. pneumoniae and then responds to cause inflammation that is necessary for controlling infection. They are basic science research which do not directly feed into clinical care, but help us better understand how diseases like pneumonia develop and could therefore be prevented.

  1. Jose R et al. De novo bronchiectasis in haematological malignancies. ERJ Open, in press 2019.
  2. Kin et al.  Reproducibility of an airway tapering measurement in computed tomography with application to bronchiectasis.’  J Medical Imaging, in press 2019.
  3. Weight CM, et al. Epithelial control of colonisation by Streptococcus pneumoniae at the human mucosal surface Nat Comms 2019 10(1):3060.
  4. Javan RR et al. Prophages and satellite prophages are widespread among Streptococcus species and may play a role in pneumococcal pathogenesis Nat Communications, in press 2019.
  5. Periselneris J et al. Relative contribution of extracellular and internalised bacteria to early macrophage pro-inflammatory responses to Streptococcus pneumoniae. mBio, in press 2019.

 

Management and Treatment of IPF – Update

Idiopathic Pulmonary Fibrosis, or IPF, is a growing problem worldwide with increasing numbers of people being affected. There is no cure and treatment options are limited to expensive anti-fibrotic drugs that can slow down the progression of the disease, but not reverse it or stop it completely. These medications have multiple side effects, which can further impact on patients’ quality of life, and only patients with moderate lung function impairment have approved funding to receive them.

The management of patients with IPF is multifaceted and consists of patient education and support, regular outpatient surveillance, symptom relief, pulmonary rehabilitation, annual vaccinations to prevent respiratory infection, supplemental oxygen, managing of comorbidities and ultimately palliative care or, in a minority of patients, referral for lung transplantation.

Following the publication of the ASCEND (A Phase III Trial of Pirfenidone in Patients with Pulmonary Fibrosis) and IMPULSIS (Investigating the Safety and Efficacy of Nintedanib in IPF) trials, two new anti-fibrotic treatments became available for patients who meet stringent National Institute for Health and Care Excellence (NICE) criteria. Pirfenidone and Nintedanib neither cure nor reverse the fibrosis, and have little impact on symptoms, but have been shown to reduce rates of lung function decline and, in the case of Pirfenidone, improve progression-free survival.

Both Nintedanib and Pirfenidone, which are available for use in patients with moderate IPF as defined by an FVC of 50-80% predicted, are associated with side-effects that can affect a patient’s ability to tolerate treatment. Commonly reported side-effects of both are gastrointestinal including diarrhoea, nausea, abdominal pain, and vomiting as well as weight loss and liver enzyme derangement. Additionally, Pirfenidone is associated with skin photosensitivity. These side-effects can be managed with dose reduction, anti-motility agents, taking medication with meals and avoiding sun exposure, but undoubtedly further impact upon health related quality of life.

Update by Dr Emma Denneny

A Gift For Life – A Guide to Making A Will

Leaving Breathing Matters a gift in your Will can help us continue our pioneering research.

This is a guide to preparing, making or amending (adding a codicil to) your Will. It does not constitute legal advice and we advise that you seek professional advice to write or amend your Will. Legacy gifts to registered charities like Breathing Matters, UCLH Charity are exempt from tax, and a solicitor will be able to give advice as to tax planning.

For a Will to be valid, it must be in writing and:

  • Made by a person who is 18 years old or over.
  • Made voluntarily and without pressure from any other person.
  • Made by a person who is of sound mind. This means the person must be fully aware of the nature of the document being written.
  • Signed and dated by the person making the will in the presence of two witnesses, who are not beneficiaries of the will.

If you are making your Will while on the premises of any of the UCLH hospitals or UCL research centres, please note that no member of UCLH or UCL staff can witness your signature if this organisation is a beneficiary. Such an act could invalidate the Will because a witness cannot be a beneficiary.

If you wish to discuss any matters relating to leaving a Legacy to Breathing Matters, please email us at breathingmatters@ucl.ac.uk

 

STEPS TO MAKING A WILL

1: Appoint a solicitor – A list of solicitors who deal with wills and probate in your area can be found on the Law Society website: www.lawsociety.org.uk

2: Information to take to the solicitor – Taking the following information to your solicitor will save time and ensure that all the information is to hand when drafting your Will. Remember to split the value of any joint assets or liabilities.  See checklist below.

  • Your details: Full name, address and post code, telephone number.
  • Value of Your Estate: Up-to-date information as to the value of your estate would assist. Things to think about would be: house, antiques/paintings, household contents, vehicles, jewellery, savings and investments, insurance policies, pensions, endowments and any other assets you would like included.
  • Liabilities: This will include any debts, ie. mortgages, loans, credit card balances, credit agreements, overdrafts, tax bills and any other outstanding debts.
  • Executors – The names and contact details of, ideally, two executors (see below for more information on executors).

3: Your wishes and who you wish to benefit – A Will ensures your wishes are carried out and will save problems for your loved ones who are left behind. Those who benefit are your “beneficiaries”. They may include family, friends and any causes that you would like to leave a Legacy to. The solicitor will require their contact details and how your estate is to be divided.

4: Leaving a Legacy to Breathing Matters – If you wish to leave a gift to us, this is called a “Bequest”. It helps if a Bequest is not too exact as types of equipment or names of treatments may change over time. If a Bequest is too specific, it may mean that we will not be able to meet all the conditions in the future and the Legacy may not be used to help with new research projects.

There are three main types of Bequests that you can choose to leave Breathing Matters a share of your estate:

Pecuniary Bequest: This is a gift of a fixed sum of money, and we recommend the following wording: “I give the sum of £.… (amount in figures and words) to Breathing Matters, UCLH Charity (registered charity no.1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

Residuary Bequest: A gift made of the remainder/residual of your estate after all other beneficiaries are provided for and any debt, tax and administration costs have been met. We recommend the following wording: “I give all (or a % share) of the residue of my estate to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

Specific Bequest: This is a particular item or asset left as a gift. An example would be a piece of jewellery, furniture or painting. We recommend the following wording: “I give to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

It is also a good idea to include the following wording at the end of the Bequest: “If, at my death, any charity named as a beneficiary in this Will or any codicil hereto has changed its name or amalgamated with or transferred its assets to another body, then my executors shall give effect to any gift made to such charity as if it had been made to the body in its changed name or to the body which results from such amalgamation or to which such transfer has been made.”.

5: Who will carry out your Will? – In your Will, you appoint “executors”. They are appointed to carry out your instructions left in your Will. It is advisable to have two executors. The solicitor will need details of your executors – who can be family, friends and/or professionals. Executors can be beneficiaries to the Will. It is usual to have someone who would understand financial matters. It may help to add a side letter, setting out your instructions to the executors.

6: Signing of a Will – Until the Will has been signed, it is not valid. It must be witnessed and those witnesses can not be beneficiaries under the Will.

 

AMENDING AND UPDATING YOUR WILL

It is always a good idea to review your Will after any major life changes for example, getting married, having a child, divorced or moving house. A change to your will is called a “codicil”.

A Codicil to an Existing Will

A codicil is a minor amendment or change to your Will.   Sample wording as follows: “I [name] of [address] DECLARE THIS to be a codicil to my last Will

  1. In addition to the provisions of my said Will, I GIVE to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) for its research purposes

EITHER:

  1. a) the sum of £……, or
  2. b) [all or a specified %] of the residue of my estate
  3. IN WITNESS whereof, I have hereunto set my hand this [day] day of [date] SIGNED as a codicil in the presence of: (space for the names, addresses and signatures of witnesses”.

A solicitor can assist you with the final wording.

 

If you wish to discuss any matters relating to leaving a Legacy to Breathing Matters, please email us at breathingmatters@ucl.ac.uk

You can help us make a difference!