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Breathing Matters – Partner of the 2020 Respiratory Health Campaign

Breathing Matters is honoured to work with Health Awareness on the 2020 Respiratory Health campaign.

The campaign features exclusive content from key thought leaders and industry voices about respiratory conditions and external risk factors such as air pollution and COVID-19.

There are a wealth of great articles, including:

  • One person dies every hour of pulmonary fibrosis
  • Improve your quality of life with cleaner indoor air
  • Can your income make your asthma worse?
  • Breathlessness – when to seek help
  • Improving air quality around schools to protect children

A printed publication is enclosed within every copy of the Guardian newspaper and the content is available online at www.healthawareness.co.uk/respiratory.

Definitely worth a read!

 

 

 

 

Stark Facts about Pulmonary Fibrosis

  • Without treatment, 50% of Pulmonary Fibrosis [PF] patients will die within 3 years of diagnosis. Treatment extends life expectancy to 7-8 years.
  • Men are nearly twice as likely as women to suffer from PF.
  • There are 8000 new cases of PF every year in the UK.
  • 33,000 people are living with PF in the UK.
  • More than 30,000 people will be diagnosed with PF in the 27 EU countries each year.
  • PF is more common than all leukaemias combined.
  • 3-20% of people with PF have another family member with PF.
  • Most patients can be diagnosed from 1 to 12 years after their first symptoms.
  • Pulmonary fibrosis costs the NHS £88 million per year.
  • 5 million people worldwide have PF.
  • 1 in 3 PF patients are expected to die within the next 12 months.
  • There are 5,000 PF deaths per year.
  • 9,000 admissions and 86,000 hospital bed days accounted for by IPF patients per year.

HAVE A LOOK AT OUR PULMONARY FIBROSIS WISH LIST

PLEASE HELP US CHANGE THESE STATISTICS

DONATE NOW!!! 

 

New COVID-19 Clinical Trials Funded

Professor Joanna Porter was delighted to be awarded over £2M from LifeArc to run two clinical trials in COVID-19.

The first, ATTRACT, is in collaboration with Vicore Pharma, whom we have worked with for over 10 years on developing novel approaches for pulmonary fibrosis. The drug, VP01 (Compound 21; C21) is hoped to recalibrate the renin-angiotensin- system towards repair rather than inflammation.  This should indirectly help our research into pulmonary fibrosis too.

The second study, COVASE, is a collaboration with Veni Papayannopoulos and Veronique Brilaut at The Francis Crick Institute, to investigate an approved nebulised recombinant human deoxyribonuclease I (Dornase alfa) to reduce hyperinflammation from neutrophil extracellular traps in the lungs of hospitalised participants with COVID-19.

ATTRACT is open to recruitment and COVASE will open in the next two weeks.

Here’s the LifeArc press release with more info: https://www.lifearc.org/funding/covid-19-funding/

 

Thank you all 2600 times

Due to the COVID-19 pandemic, many major fundraising events were cancelled this year, including the biggest fundraiser of all, the London Marathon.  Charities were reporting a projected loss of 48% to their voluntary income, and a third wiped off from their total income.

On Sunday, 26th April 2020 – one month ago today and the scheduled day of the London Marathon – the nation joined together to help UK charities.  The challenge was to dream up an activity based around the numbers ‘2’ and ‘6’ and donate (at least) £26 to their favourite charity.

Loads of our lovely supporters joined the 2.6 Challenge in droves to support Breathing Matters and we wanted to say thank you to you all.  You have helped us raise a very apt £2600!

Here are a few of our favourite challenges:

  • Thanks to Liz Wiazek and family for their 26 sun salutations.
  • Thanks to Jessica, Emily and Seb plus dog Megan for running 2.6 miles around Stokesley Beck, raising £373 in memory of their grandad Andy Herring.
  • Thanks to Pavan Kohli for walking 2.6 hours on a hot Sunday and raising £178.
  • Thanks to Karen, Mike, Jose and Oli Fox for running 2.6k en famille.
  • Thanks to Steph Fisher and her amazing family for raising an incredible £943 for their 2.6 challenges.
  • Thanks to Elizabeth Coe who walked her pony 26 times around the field.
  • Thank you to John McCready who wrote a lovely 26 line poem.
  • Big respect to Elisa and Andreas who did a 26 second handstand for their challenge!
  • Thanks to Val and Jack for walking up and down their corridor 26 times.
  • Thanks to Maisie McCready for walking around her garden 26 times every day for a week.
  • Thanks to Terri Russell for walk-jogging for 2.6K and ‘a little bit more’.
  • Thanks to Tom for doing 26 keepie-uppies … not easy!
  • Well done Jo Porter on giving 26 beloved books to charity.
  • Thanks to Mary Foley for walking 2.6k in 26 minutes – that’s speedy!
  • Well done Jerry Brown on completing a 2.6k bike ride.
  • Thanks to James and Emily for their 26.2 mile [marathon] bike ride.
  • Thanks to Greg and Colin who cycled 260K over the week – that’s as far as London to Sheffield! Thanks guys.
  • Thanks to Donna and Nick who did 26 Just Dance dances in 2.6 hours.
  • Thanks to the Smith family and the Howard family for doing a variety of 2.6 challenges … together – but not together.
  • Thanks to Rebecca and Ted who did 26 exercises 26 times.
  • Thanks to Sean for drinking a bottle of beer in 2.6 seconds!

Thank you to all the above plus everyone else who donated £26 and beyond to mark our 2.6 Challenge.

Carrying on with COVID-19

It is fair to say the world has changed in 2020 since the COVID-19 Coronavirus outbreak in December 2019.

Many of our research team have volunteered to work on the NHS frontline at this very busy time but, despite this, Breathing Matters is still continuing its important research work in interstitial lung diseases, pulmonary fibrosis, bronchiectasis and lung infections.

COVID-19 disease is caused by the SARS-Cov-2 virus. SARS means severe acute respiratory syndrome. So, Breathing Matters is joining the national effort in trying to find out as much as possible about this new virus; the more we know, the quicker we will have better treatments, less deaths, decreased shielding and ultimately a vaccine.

Our new studies will include researching new therapeutic agents and understanding the long-term damage to lungs in patients who have recovered from COVID-19, and perhaps give us more insights into the origins of IPF and other fibrotic lung diseases.

The funding we continue to receive from our supporters is vital to our community and to our future. Thank you so much for continuing to support our important work. Donations can be given in different ways: https://www.breathingmatters.co.uk/ways-to-donate

I am sure you would like to join us in saluting our extraordinary team who are working tirelessly in helping the nation, both on the frontline and in the labs.

Our very best wishes goes to every one of you. Please keep safe and stay alert.

 

Virtual Fundraising Challenges

For you lovely people out there who are itching to fundraise, but have not been able to during the COVID-19 pandemic – this is especially for you!

Our event partners, Run for Charity, have just launched a virtual challenge series for young and old, for the fit and not that fit.  It’s a great way of making the most of your time in isolation, having a purpose and keeping/getting fit.  It  is a unique chance for those non-marathon runners to get involved and run/walk a marathon or climb a mountain at your own pace.  And you can win a medal at the end (we all love a good medal!).

Here is a list of our current virtual challenges:

Climb Everest – A 12 week challenge perfect for isolation. Challengers will have to complete a climb equivalent to Mount Everest (8,848m) either out and about on your daily exercise, climbing the stairs indoors, or a combination of the two!

Inca Trail – A virtual challenge to tick off the bucket list. A 25 mile run, walk or jog to be completed in as many efforts as you can manage.

Team Gotham – Not all Superheros wear capes….some have to fight crime in isolation too! This is a 5K challenge, so perfect for families who want to complete it together, or anyone looking to stay fit during lockdown.

The Big Charity Run – The ultimate challenge; you can choose your own.  Pick a 30, 60, 90 or 120 mile distance to complete over a single month. You can run, walk or cycle, so perfect for setting an ambitious target and staying motivated!

Plus there are lots of location specific races that you could join, including:

  • Richmond Park – Half Marathon
  • Tatton Park – 10K
  • Victoria Park – 5K, 10K & Half Marathon
  • Brixton – 5K & 10K
  • Wimbledon Common – Half Marathon

All you need to do is choose your challenge, register and start.

  1. Choose and register here. Receive confirmation email to log in to our Secure Charity Portal.  Payment covers the cost of the place and medal only.
  2. Breathing Matters will get notification that you have signed up for your challenge and will contact you  Or you can contact us directly at breathingmatters@ucl.ac.uk
  3. Set up a Breathing Matters personal fundraising page.  It is up to you how much you want to raise for Breathing Matters; there is no minimum sponsorship limit.
  4. All you need to do is gather evidence along the way of your challenge (eg. photo of your fitness tracker, Strava) and, once completed, simply email it to virtual@runforcharity.com

Your medal will be sent out by our partner in the post.

Run for Charity have partnered with one of the top virtual events companies in the UK, ‘My Race’, who have been producing and fulfilling Virtual Events for many years, so you are in safe hands.

All funds raised will go towards much needed research into pulmonary fibrosis,  COVID-19, bronchiectasis and lung infection.

So you can keep safe, stay alert, social distance, and do something worthwhile at the same time!

What are you waiting for? …

 

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.

Newsletter – Autumn 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

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 

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