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Call for Help from Ex-Inpatients with COVID-19

URGENT call to patients that have been admitted to hospital with diagnosed COVID-19.
We need your immediate help in writing a protocol for a COVID-19 clinical trial.
Please email us on breathingmatters@ucl.ac.uk and we will email you back with questions.
Thank you in advance.

 

 

 

In Memory Page

Thank you for visiting the Breathing Matters website to find out how to set up an ‘In Memory’ page.

You can set up an ‘In Memory’ page from our donation home page.  You can then share your personal donation page with friends and family. On this page, you can share memories, stories and photographs. You could also include details of a thanksgiving service. Your friends and family can add their sentiments too along with their donations and you can easily see what they have written and how much you have raised.

An ‘In Memory’ page is a way to let the memory of your loved one live on and is a wonderful way of celebrating their life. As well as being an online memorial in which you can share memories, stories and photographs, the funds raised through your page go directly to Breathing Matters and will help others affected by pulmonary fibrosis and other interstitial lung diseases plus COVID-19, bronchiectasis and other lung infections, and will help our work to continue in their memory.

You can keep your page open for as long as you wish too by adjusting the settings, so you can keep adding to your donations in the future or help promote fundraising if you are doing an event to commemorate your loved one. Your donation page is easy to share online so can be a good way to publicise and gather support for an event.

Your ‘In Memory’ page is created and maintained by you as a space to remember your friend or relative in your own way.

Thank you – giving a gift in memory is a very special way to remember your loved one.

 

Funeral Donations

If you are organising a collection in memory of a loved one and would like to donate to Breathing Matters to help us continue our important research work, we humbly thank you for thinking of us.

Organising a Collection

Many prefer to donate money in lieu of funeral flowers.

You can organise an online collection by setting up a personal donation page from our donation home page and then sharing your personal donation page with friends and family. On this page, you can share memories, stories and photographs with family and friends. You could also include details of a funeral or thanksgiving service. Your friends and family can add their sentiments too along with their donations.

The money raised will go directly to Breathing Matters and your donors will be given the option of giving Gift Aid which will increase their donations by 25%. You can also easily see how much has been raised in memory of your loved one.

Sending in Donations

Some family and friends may make donations by cheque or cash and your Funeral Director may collect these at the service.  When paying in donations, we would like to make sure that we process and acknowledge the donation correctly and it would be very helpful if you or the Funeral Director let us know:
• The name of the person the donation is being made in memory of.
• Your name, address and relationship to your loved one.

Please send all cheques to:
Breathing Matters
Rayne Institute, UCL
5 University Street
London WC1E 6JF

Feel free to print out our Gift Aid Certificate, which increases donations by 25%.

If you need any more information or if you need our bank details to directly transfer donations, please contact us on breathingmatters@ucl.ac.uk

Thank you – your donations will make a huge impact to our research work!

 

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

 

Newsletter – Autumn 2019

Get Out of Breath for #Breathtember

 

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

Tweet Tweet!

https://www.breathingmatters.co.uk/wp-content/uploads/2013/06/twitter.png

To help raise awareness, we ask that supporters tweet different challenges during September including the term ‘#Breathtember and ask their followers to retweet and share this information as widely as possible.

Think outside the box for your challenges – getting out of breath for you could mean:

  • Cycling around your local park
  • Doing a colourful or musical 5K/10K run or walk
  • Singing until you are out of breath
  • Walking over the wondrous London bridges
  • Blowing bubbles … or windmills!
  • Skydiving
  • Or just simply walking up the stairs!

The important thing is that you tweet your challenge including the hashtag ‘#Breathtember’ to raise awareness of pulmonary fibrosis.  Add a photo if you like.  This September, we want as many people as possible to see the term ‘#Breathtember’.

Follow us on Twitter for further details: @Breathingmatter 

twitter

 

 

SUMMER SALE on global adventure challenges – grab a bargain for 2020!

Global Adventure Challenges are giving our supporters a fabulous 20% off registration for all UK and overseas challenges in 2020.

This offer is valid until the end of July 2019.  You need to quote ‘SUMMER20’

 

Here are a few examples, but there are many, many more to choose from:

  • Vietnam to Cambodia Cycle
  • Sahara Desert Trek
  • Great Wall of China Trek
  • India Cycle Challenge
  • Snowdon at Night
  • The Alps Trek
  • Lapland Husky Trail
  • Yorkshire 3 Peaks
  • Wales End to End
  • Land’s End to John O’Groats Cycle
  • London to Paris Bike Ride

A full list of challenges can be found at: https://bit.ly/2WuJOJM

Grab a bargain … you know you want to!

 

 

 

 

 

Who Wants To Be A Superhero for the Day – New 5K Run in the City of London

Would you like to be a real superhero?

Would you like to dress up as a superhero and run 5K through the City of London along the Thames?

Then – ‘Superhero in the City’ will be right up your [London] street!

This fun inaugural race event is on Thursday 13.6.19 at 7pm. It starts at the North side of the Millennium Bridge, via the Southbank, then crosses back over Southwark Bridge and continues along the North Embankment towards St Paul’s Cathedral.

It’s the first race of its kind and we just know that this will be a popular event for years to come.

Why not be the first to be a Superhero this year!

Breathing Matters has places for £24 each. But don’t delay, you need to register by 20.5.19 to guarantee your place: https://bit.ly/2GOk9V6  We just ask that you raise £50 for Breathing Matters towards our valuable research.