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Help Us Ensure Captain Tom’s Legacy Lives On

On 6 April 2020, Captain Tom Moore set out round his garden to thank our NHS heroes. One hundred laps later, he’d raised an incredible £38.9 million for the NHS Covid-19 appeal.

His simple message of hope – “Tomorrow will be a good day” – inspired millions around the world and brought comfort and joy to so many during the pandemic.

Like many other charities, Breathing Matters has been hugely impacted by the Covid-19 pandemic, with the cancellation of many fundraising events and subsequent loss of income over the last year.

Now it’s your turn to build on that legacy. Friday 30 April would have been his 101st birthday and to honour him and his amazing achievements, The Captain Tom Foundation would love everyone, of all ages and abilities, to take part in the Captain Tom 100.

Do it your way! – Everyone of all ages and abilities is invited to take on a challenge around the number 100 anytime and anywhere over Captain Tom’s birthday weekend – it’s the May Bank Holiday weekend, so you’ll have lots of time.

Here’s How It Works – It’s so simple.  

1. Dream up your 100 challenge. It can be anything you like – here’s some examples:

  • Walk 100 laps of your garden, just like Captain Tom.
  • Run for 100 miles over the weekend, or 100 minutes … or 100 seconds!
  • Bake 100 cakes.
  • Dance/cycle for 100 minutes (1 hour, 40 minutes).
  • Write 100 letters.
  • Swim 100 lengths of the pool.
  • Do 100 keepy-uppies.
  • Walk 100 steps on your hands or do a handstand for 100 seconds.
  • Tell 100 jokes.
  • Do 100 burpies, press-ups or sit-ups.
  • Climb your stairs 100 times.

But the best challenges are the ones you think up yourselves!

2. Take on your Captain Tom 100 challenge any time between Friday 30 April and Monday 3 May 2021.

3. We would humbly ask that you raise funds for Breathing Matters.

Encourage your family and friends to take up the challenge and together we’ll all ensure Captain Tom’s legacy lives on.

Help inspire the next generation of Captain Toms by sharing your pictures and videos on social media, using the official hashtag #CaptainTom100

Captain Tom merchandise – https://www.captaintom.net/captain-tom-shop/

Thank you for keeping Captain Sir Tom’s legacy alive and for helping Breathing Matters.

 

 

 

Our Three Forefathers

There are 3 important gentlemen that were instrumental in creating our charity.  Without them, simply put, there would be no Breathing Matters.

1. Mr Balwant Tamhane

Balwant’s daughter is Manjiry Tamhane – Patron and co-founder of Breathing Matters.

Balwant died from idiopathic pulmonary fibrosis in 2008.  Manjiry says of her father, “He was the life and soul of any party. He was laid back, carefree, open-minded and adventurous. He came from a humble background, but worked and studied hard to provide a better life for his children and went on to become a Partner in a top London architectural firm.”

In the first 72 years of his life, Balwant was rarely ill. He hardly ever went to see a doctor and had never been admitted to hospital. He was fit, active and generally in good shape.

In the summer of 2008, Balwant started to have flu like symptoms, which was unusual for him.  These persisted and his breathing became laboured and wheezy. He was admitted to hospital and placed on oxygen. He was diagnosed with idiopathic pulmonary fibrosis; 5 weeks later he had died.

When the doctors diagnosed IPF, Manjiry went straight to the internet to search for information. Back in 2008, there was very little information available apart from a few obscure research papers from Japan and the US describing various theories and inconclusive results. Manjiry did find a US website called the Pulmonary Fibrosis Foundation, but information in the UK was sorely lacking. She knew at the time something needed to be done about this and went straight to meet with Professor Geoffrey Laurent to see if she could help change this.

2. Professor Geoff Laurent

Professor Laurent was a founding member of Breathing Matters while he was Medical Director of the Centre for Respiratory Research.

Geoff Laurent was an acclaimed scientist and a globally renowned world class researcher on every aspect of respiratory health.  A lover of life, he was blessed with an ability to bring people together in the spirit of collaboration and innovation. His curiosity and intellect were infectious.

Having completed his Bachelor of Science degree with first class honours at the University of Western Australia where he was born, Geoff was driven to seek out the best scientific outcomes from across the world. He studied at the National Heart and Lung Institute/Royal Brompton Hospital London and eventually became Professor and Director of the Centre for Respiratory Research at UCL. Geoff published over 200 articles in international journals of biomedical research and was awarded the European Respiratory Society Presidential Award for his contribution to lung science. In 2006, he was elected Fellow of the Academy of Medical Sciences and President of the British Association for Lung Research.  At UCL, Geoff established himself as one of the world leaders in chronic lung disease research, focusing primarily on lung fibrosis.

When Manjiry Tamhane came to see him in 2009 to talk about how she could help the world of pulmonary fibrosis, Geoff used his collaborative skills and was inspirational in getting together a team to create the first UK based charity that focussed on lung fibrosis and infection research – which was to become Breathing Matters.

We are sad to report that Professor Laurent passed away in 2018, but he is fondly remembered at Breathing Matters and his spirit thrives within us all.

3. Lawrence Matz

Lawrence Matz was an inaugural supporter of Breathing Matters.

Lawrence had a unique gift of being able to make everyone feel as though they were the special one. The life and soul of any party, he would always stand out in the crowd. Nothing was too much for him and for his wife Gloria, his two boys Mark and Adam, family and friends – he would do just about anything for them. He lived every day like it was his last, cramming more into his all too brief time than most of us can expect to achieve in a lifetime. He enriched so many lives with his vibrancy, charm and love.

In 2009, Lawrence was diagnosed with pulmonary fibrosis.  He built up a strong bond of mutual respect with his consultant Jo Porter and wanted to help with her passion of creating a charity for research into pulmonary fibrosis.  During 2010, he regularly met with the Breathing Matters strategy and build team to give his help and advice, and he and his wife Gloria attended our launch in February 2011.

Unfortunately, having been relatively stable for nearly 2 years, Lawrence started to decline very quickly and it was clear that his own lungs would not keep going for much long despite treatment. In July 2011, Lawrence was needing oxygen for 24 hours a day. He was accepted on to the urgent transplant list, but very sadly, a transplant did not become available in time – 6 weeks later he died.  Jo and the team promised to fight on towards a cure for this cruel disease.

As engraved on his memorial stone, Lawrence taught us all the true meaning of courage.  Over the next few years, Lawrence’s loving family and friends raised £45K for Breathing Matters in his memory, and this initiated our fundraising effort towards that promised cure.

 

Top 10 Highlights in 10 Years

1: Involving You

We have had many opportunities to meet our supporters over the years from small personal meetings to large tours; both are very special to us – you are the lifeblood, or the lungs (!), of Breathing Matters.

Our launch event on 19th January 2011 seems like only yesterday.  Professor Geoffrey Laurent, the then Director of the Centre for Respiratory Centre, was joined by his team of scientists and researchers as well as respiratory doctors.  It was attended by over 100 patients and relatives.  Speakers included Jo Porter, Malcolm Weallans and Manjiry Tamhane who spoke about topics ranging from living with respiratory disease through to the importance of patient support in shaping future scientific research and ways you could directly help us.  Our scientists were inspired by meeting our supporters and the patients whom their work helps.

Since then, you have attended our research meetings, events and our patient supporter meetings; you have helped us steer the way forward and shaped our research; you have advised on our fundraising and awareness strategies, you have attended our centre tours to see our labs and talk to our researchers about our work, and you have helped celebrate our achievements.

2: The First UK Treatments for IPF

In 2014, UCLH became an NHS-England Specialist Centre for the diagnosis and management of Interstitial Lung Disease.  This was important and timely as it enabled our doctors to prescribe idiopathic pulmonary fibrosis patients with Pirfenidone and Nintedanib – the first treatments in the UK available to IPF patients. These antifibrotic therapies slow decline in lung function and reduce the risk of acute respiratory deteriorations.

This was a game-changer.

3: Funding Clinical Fellows and Their Research

Breathing Matters has funded three celebrated Clinical Fellows:

  1. Lawrence Matz Clinical Fellow – Dr Theresia Mikolasch, who set up our Cryoscope Service and was the original soldier in our Neutrophil Army.
  2. Mark Hulme Clinical Fellow – Dr Helen Garthwaite, who worked on our important PET response studies.
  3. Christopher Whittington Clinical Fellow – Dr Emma Denneny, who is currently working on novel biomarkers to detect lung fibrosis with a blood test, earlier than standard CT imaging.

The work that our Clinical Fellows have done has enabled us to leverage a further £450,000 in grants.

4: Pioneering Diagnostics – Cryoscope

Our Lawrence Matz Clinical Fellow set up the Cryoscopic Lung Biopsy Service at UCLH, a pioneering minimally invasive diagnostic technique.  The cryoscope was part-funded by Breathing Matters.  In February 2013, UCLH diagnosed idiopathic pulmonary fibrosis from a cryoscopic lung biopsy – this was a UK first.

This was important for:

  • The Patient: who undergoes a day case procedure as opposed to a surgical lung biopsy, thereby avoiding hospital admission, an unsightly and painful scar and a chest drain.
  • The histopathologist: who said the quality of the tissue and preservation were excellent and much better than other minimally invasive biopsies due to the freezing during the procedure.
  • Our ILD research programme: We now have access to lung tissue that is removed, but is excess to that needed for clinical diagnosis.

5: Predicting and Detecting Pulmonary Fibrosis

A lot of our research is looking at better ways to detect pulmonary fibrosis even whilst the lung CT scan is normal. Our ultimate aim is to make an early diagnosis of PF with a blood test. Until then, we are looking at using very very sensitive imaging techniques, such as PET scans and MRI, to detect early changes in radiologically normal lung on CT scans. We have found that we can predict how severe PF is and how quickly it will progress from these PET scans and they may even help us guide treatment. Another exciting area is radiogenomics in which we use imaging patterns to understand the role of genes that predispose individuals to developing IPF.

6: Breakthroughs in Lung Infection

Through work partly done at UCL/H, bronchiectasis was proven to be more prevalent in the UK than previously thought – leading to better GP awareness, diagnosis and treatment.

We highlighted that bronchiectasis in those with weakened immune systems due to haematological disease develops very quickly; better awareness will make doctors much better at recognizing these patients and referring them to specialist centres, such as UCLH.

Our other work uses computers and CT scans to measure the exact degree of the dilatation of the bronchi in patients with bronchiectasis.  This is a significant breakthrough as it will allow us to follow what happens to a particular patient over time, and rapidly identify if things are getting worse.

The Bronch UK national study was the first study funded by the Medical Research Council into bronchiectasis for many years. The aim of the study was to look into the spectrum of disease caused by bronchiectasis, how severe the disease is and how it actually affects the patients’ quality of life.  Thank you to our 150 recruits!

Breathing Matters has supported the important PHOSP-COVID Urgent Public Health study looking into the long term effects of the COVID-19 virus which causes lung infection.

7: Spreading the Word

Where would the medical world be without scientists and researchers?  How would they get new treatments for their patients?  How would GPs find out about new or little known diseases and know when and how to act quickly?

Breathing Matters has reached out and spread awareness through various ways over the last 10 years.  Each September, we highlight global pulmonary fibrosis awareness month through our #Breathtember campaigns, we communicate regularly with you via our website, newsletters and social media, we have held awareness stalls in our hospital [world pneumonia day, #Breathtember, organ transplant month, bronchiectasis charity stalls] and at local institutions, including Sainsbury’s where we were Local Charity of the Year.  We even advised on the IPF storyline on Coronation Street in 2019.

8: FUNdraising and FUNdraisers

Breathing Matters has had some amazing and innovative fundraising challenges over the last 10 years.  We started our fundraising journey in 2011 with the first of our charity bike rides in Richmond Park.  After 4 years, we went bigger and moved to the Olympic Velodrome offering a myriad of biking challenges.  One of our star fundraisers, Jane Walker, with the help of many of our supporters, including the Holst Singers, has now raised £30K for bronchiectasis research through the Breathing Matters charity stalls and charity concerts-amazing!  Keeping ahead of the curve, our charity silent discos at the London Steam Museum were a big hit and 2020’s virtual fundraisers were challenging in a different but safe way. But our supporters have come up with some of the BEST ideas, including golf days, head shaves and hairdressing days, jewellery sales, bake sales, house clearance sales, swims/walks/runs/bike rides of all distances, motorbike challenges, spinathons, zumbathons, charity CD, concerts and recitals, going up mountains, falling from planes or bungying, books, boxing, dieting, giving up alcohol or smoking, charity beer, charity dinners, pancake events, husky sled trails and even a tractor run … among many many more!

9: Royal Visit

In 2016, UCL Respiratory was honoured when HRH Princess Anne paid us a visit.  The Princess Royal attended in her official capacity as Chancellor of UCL to officially open the refurbished labs.  During her visit, HRH met with the designers and architects along with our important researchers and scientists, and was treated to a tour of the labs.

The Breathing Matters team was introduced to the Princess Royal and it was a huge honour to have the opportunity to talk with her about the charity and what we’ve accomplished.  HRH asked us to “keep up the good work” and, with your help, we have done just that!

10: Your Support

You, our supporters, have helped us achieve so much.

With YOUR help, at 3 years, we had reached £250K; at 7 years, we had reached £500K; and at 9 years, we reached an incredible £750K – all because of you!

We have decided to keep our charity small so we have little overheads, enabling all your hard-earned fundraising and donations to be funnelled into our vital research.

 

If you would like to help us ‘keep up the good work’ and make a difference, you can do so via our Justgiving Page or email us on breathingmatters@ucl.ac.uk for our bank details.

 

 

An Ode to 2020

To mark the end of this difficult year, one of our lovely supporters has written this poem:

 

Wishing all our family and friends a very Happy New Year!!

Goodbye 2020: farewell, adieu,

We’re so glad to see the back of you!

You’ve brought so much hardship, sorrow and pain,

We hope never to see your like again.

You ruined our Holidays and plans this year,

And caused our nation to live mostly in fear.

Tight restrictions and lockdowns made us all see

How important it is just to be free.

We will look back at you in years to come

As a time when we all had to stay at home.

At midnight tonight, when you depart,

Your legacy will be many a broken heart.

And so we rejoice this New Year’s Eve

As dastardly 2020 finally takes its leave!

Here’s to a Happy New Year everyone!!!

 

Our Christmas and New Year Message

We hope that you and your families are all well and have survived 2020.  Thank you all so much for supporting us during this tough time.

It has been a strange year and a very busy one.  In March, many of our research staff took up the call to work on the frontline and the rest of the team worked hard on COVID-19 clinical studies to find life-saving treatments.

COVID-19 is a Respiratory disease, one that especially affects the Respiratory tract, and we are beginning to learn more about the lungs through this research.

It is clear that the SARS-CoV-2 virus (that causes COVID) is unusual.  It can affect the blood vessels resulting in a constellation of symptoms. One of the startling findings is that we are seeing new pulmonary fibrosis develop in about 6 of every 100 COVID patients that are admitted to hospital, and in around 3 in 100 of those treated in the community with mild COVID. It also appears to worsen fibrosis in patients who already have lung fibrosis, so access to the vaccine for our patients with pulmonary fibrosis is vital.  We are particularly interested in why some people get fibrosis after COVID and others don’t and we hope this will provide crucial insights into the whole spectrum of pulmonary fibrosis. We are closely following nearly 1000 patients who were admitted to UCLH with COVID or who been referred to us with breathing problems after COVID infection. Understanding how many get better, and how many have progressive fibrosis is critical for patients and the NHS to plan ahead.

Unfortunately, even after getting rid of the virus, many patients will continue to have symptoms that can be very debilitating. Breathing Matters has supported the national Urgent Public Health study, PHOSP-COVID. This study will discover what the long-term effects on health might be after being hospitalised with COVID-19 infection.

We have of course also been deeply committed to helping in delivering trials of new vaccines at UCLH. It is wonderful that we have not only one, but maybe as many as three different effective vaccines. We are hopeful that widespread vaccination will bring us all a return to normality in 2021.

Of course through all this, the main thing that has kept Breathing Matters and the team going is your vital, continuous and unwavering support.  Many health charities have seen dramatic reductions in income over 2020 with little respite in 2021. We hope that by keeping our overheads as low as possible and bringing in funding from other sources, and with your help, we can weather this storm.

Fundraising has taken a back seat this year with fundraising events, including the London Marathon and the Prudential Ride London cancelled.  However, we do have plenty of virtual events to whet your fundraising appetite, including a Virtual Christmas Concert given by the excellent Holst Singers. If you want to plan a future challenge overseas in 2021/2022, we have plenty of amazing events including the Northern Lights Trek in Iceland, Yosemite to San Fran cycle and a trek around the Great Wall of China. For inspiration, take a look at our Events Page.

In January, Breathing Matters will be 10 years old.  We have come a long way in a decade.  Particular highlights have included the following:

  • Our development of relative non-invasive cryoscopic lung biopsy as an alternative to chest surgery to biopsy the lung, to make a confident diagnosis of fibrosis and rule out other conditions that would require different treatments.
  • Our findings that FDG-PET scans can detect the changes of early lung fibrosis before a regular CT scan and may provide a very sensitive way to measure response to therapy in patients with pulmonary fibrosis.
  • Our 10 year collaboration with Vicore which will see a new drug (C21) being tested in patients with IPF with a study set to start recruiting in early 2021.
  • Our understanding of the role of the white blood cells, neutrophils, in the development of pulmonary fibrosis which may lead to novel blood biomarkers to assess patients most at risk and help us develop novel approaches to therapy.
  • Participation in the multicentre Bronch UK research project which includes around ten hospitals across the UK. This is the first such study and will help us learn a lot more about bronchiectasis and how best to treat it.
  • Completion of two phase I trials of novel vaccines against Streptococcus pneumoniae, the commonest cause of pneumonia, partly or wholly developed by Professor Brown’s laboratory.
  • Published important data on how common bronchiectasis is in the UK, showing that, far from being a disease that is dying out, it is increasingly common and is associated with an increase in mortality including perhaps surprisingly from diseases of the heart and large blood vessels. These data are quoted by all the major guidelines for bronchiectasis and have helped promote awareness of the disease as well as shown the high need for further research.

In 2021, we will focus back on our pulmonary fibrosis and lung infection work with renewed vigour and with the firm belief that, as a community, we can overcome anything if we all do our bit.

If you would like to donate to support our research, you can do this via our JustGiving Page. Thank you to our regular donors that make such a difference to our research and enables us to plan our future projects.  If you are interesting in giving regularly, please read our article.

Thank you all for your vital support.  Together we have hope and together we are stronger.

We would like to wish you a Merry Christmas and here’s to a healthier New Year!

From Everyone at Breathing Matters

 

 

 

A Jump to the Frontline

Article by Louise Beitverda, Lead Respiratory Nurse

Prior to the COVID-19 pandemic, my role as the Lead Respiratory Nurse at UCLH involved leading a team of clinical and research nurses. The research work included inputting information into the national registry for Idiopathic Pulmonary Fibrosis (IPF), participating in audits and assisting those involved in individual research.

In March, as the numbers of hospital admissions for COVID-19 started increasing, it became clear that most non-COVID-19 research would temporarily stop, and our clinical responsibilities would change. Around this time, due to our experience with non-invasive ventilation, some of the nursing team became involved in helping to deliver an education programme for Continuous Positive Airway Pressure (CPAP). This is a type of ventilation used to support patients in respiratory failure and it was used for COVID-19 patients. We helped to train over 100 clinicians on many different devices in just a few weeks. One of the devices was the life-saving Ventura CPAP designed by UCL very early on in the pandemic and sent to 30 different countries worldwide.

Once training was completed, we worked on the Respiratory High Dependency Unit (RHDU). This unit was set up to support COVID-19 patients requiring CPAP. Other team members were able to cover clinical posts remotely, which enabled patients to be able to continue to have vital telephone support during this time. One of our research nurses was able to help support the emerging COVID trials. Our administration team were asked to work remotely, but continued to provide support by ensuring that the nurses’ emails were attended to, and urgent messages relayed. Everybody played a vital role.

Working on the wards again was an interesting experience. There were certainly some challenging aspects. Long shifts and night duties (after 16 years) took some getting used to. I re-discovered the energising effects of ‘red bull’ at 3am, although it didn’t quite give me wings! Working in full PPE had its challenges, although it was reassuring and we felt protected wearing it. It took some time to ‘don’ on and ‘doff’ off, but fortunately there were staff to support us with this dressing task. PPE was incredibly hot, and the masks could cause considerable discomfort when worn for long periods. PPE made it difficult to identify people and to be able to communicate effectively, especially to people working outside of the COVID area. However, the challenges were overcome. We quickly started writing names on our gowns, and some even attached photographs of themselves. Barrier cream was supplied for our sore noses, and regular refreshment breaks were provided to allow staff to rehydrate; 2 hours was really the maximum time it was comfortable to spend in full PPE.

Communication issues were addressed via technology with varying degrees of success. It took some skill to master the walkie talkies which connected us to outside areas and sometimes it was just easier to write a note on pen and paper and hold it up against the glass entrance door when a message was needed to be conveyed to the outside world. Technology was of course very useful in terms of keeping patients connected with their families and friends at a time when visitors were not routinely allowed on the wards. Although there were some very difficult situations, it is easy to imagine how much harder this would have been had the pandemic occurred a decade or two earlier.

As a team, we will all have our individual memories of our time in the RHDU. Some of these memories will be about the intensity of the situation, and the experience of caring for patients with severe breathlessness on CPAP. However, many of these memories will be of positive events. It was always a lovely moment when patients were discharged and we were able to clap and say farewell to them, especially to those who had been on the unit for a long and difficult time.  For me, a special moment was seeing a patient being interviewed on the BBC, discussing his recovery with the physiotherapy team. I had been on duty the night he had arrived from Intensive Care, with a tracheostomy. It was incredible to think of the journey he had been on, and so pleasing to see his progress. It’s rare that ward nurses find out what happens to patients after they have been discharged, so this was very uplifting.

Despite the difficult situation, there was a great sense of teamwork throughout our time on the RHDU. It was a privilege to work with so many other members of the multidisciplinary team, many of whom were also redeployed and were undertaking roles so different to their own. The psychology team were available to support staff and I know that they were valued. We were well looked after on the ward, with constant deliveries of donated hot meals, and refreshments. Things like this really were appreciated and gratefully received, taking the little stresses out of the day. Other things that made life easier were incentives such as free taxis and parking, to be able to drive to work and not have to consider getting the underground for a few weeks really made travel easier and safer.

Guiding the team through this uncharted territory could have been a very difficult experience, as it was an ever changing landscape and it was not clear how long the situation would continue. However, each and every one of the nursing team showed an enormous amount of flexibility, patience and resilience, and they should be very proud.

Whilst we cannot be sure what lies ahead, we will continue to contribute to the research agenda, as this is such a pivotal part of healthcare. Never has there been a time when research was more important.  Research can and will save us from this fatal virus – there are now better treatments for COVID-19 and there are new vaccines on the horizon, and very soon we will feel safe once more.

 

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.

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.

2017 Roundup – What You Helped Us Achieve

We would like to thank to you all for your loyal support over the last year and for giving so much of your time and funds.  Since our launch in January 2011, you have helped us raise £500K – without you, this simply would not have been possible.  We thank you!

So, what have we done with all your raised funds?  We have spent this wisely and here are a few important areas of research where your money has been focussed in 2017:

  • We recruited a fabulous clinician, Dr Helen Garthwaite, to be our Mark Hulme Clinical Fellow. Helen has pioneered the use of anticoagulation in IPF and has established the first clinical trial of directly acting antithrombin agent, dabigatran, in IPF. We have now started recruiting to this study and the first two patients have completed the trial. We hope that the results will be available shortly and may provide the impetus for a much larger study.
  • We held a patient and public event for IPF.  There were presentations on our research projects including our work on rheumatoid arthritis associated ILD, platelet and clotting in IPF, genetics of IPF and novel imaging in IPF.  We also met with old and new friends and established our research priorities for 2018.  We plan a much larger study of anticoagulation in IPF.
  • We completed our PET scan in IPF study which has been accepted for publication. This showed that PET scans are able to help us more accurately define the prognosis in patients with IPF.  A big thank you to the 112 patients with IPF that have given up their time for scanning over the last 5 years.
  • We published three papers on bronchiectasis which show that, although bronchiectasis is a pure lung disease, the ill-health it causes results in patients having a higher risk of diseases affecting the blood vessels in the heart and brain.

Leveraged funding: Importantly, the money that has been raised for Breathing Matters has allowed us to carry out some early seed projects. The results of these early studies have then allowed us to leverage an additional two million pounds from other sources including the Medical Research Council, The British Lung Foundation, The National Institute for Health Research and the Biomedical Research Centre since 2012.  This means that, for every pound contributed to Breathing Matters, we have leveraged another £4 that will all be put towards finding better treatments for patients.

It was lovely to see so many of you at our #Breathtember Patient/Supporter Pulmonary Fibrosis/Interstitial Lung Disease Focus Group in September and our Patient/Supporter Bronchiectasis Meeting in October. At the ILD event, Dr Porter along with our fabulous clinical fellows and scientists presented their integral and very interesting research work into PF and ILD. The ILD focus group discussed future areas of research into these conditions. The scientists loved meeting everyone at the ILD Meeting and one scientist said that meeting you helped ‘motivate us to do more and do it better and quicker’. At the Bronchiectasis Evening, Professor Brown explained what we know about bronchiectasis and what we still need to find out; and, importantly, how Breathing Matters can help. This was followed by a lively Q+A session when Professor Brown answered some in-depth questions on the treatment of the disease.

We have had two successful fundraising events in 2017, Cyclotopia and our Christmas Concert.

  • Cyclotopia is a bike fest of FUN events at the Lee Valley Olympic VeloPark from road cycling, mountain trail and track cycling.  It’s for all ages and experience. This year’s event is on Sunday, 20th May 2018 – mark it in your diary now.  Click here for news from last year’s Cyclotopia.
  • Our Christmas Concert is held in the iconic St Paul’s Actors Church in Covent Garden, which in itself is worth a visit. We are entertained by the renowned and internationally acclaimed Holst Singers and we also have celebrity readers. It is a fantastic way to start off the festive season  Watch out for next December’s date.  Click here for a roundup of last year’s concert.

If you haven’t attended these events yet, please consider coming along during 2018.  We are proud of these bespoke events; and, as they are so different, they should appeal to all of you!

Awareness is continuing to increase.  People are starting to notice pulmonary fibrosis and lung infection / bronchiectasis.  Let’s continue the good work.  Our supporters on the website, facebook and twitter have now increased to a potential 4000 supporters.  We need as many supporters as possible to help raise awareness of pulmonary fibrosis and lung infection, so asking your family and friends to like/follow us will help, and more retweeting too.  You might like to put our newsletters, leaflets, stickers or windmills on posterboards around your local area – we are always happy to provide these for you. Perhaps you could wear our stylish pin badges – email us to purchase these. Stories in the media are a fantastic way of raising awareness for Breathing Matters, and thank you so much to those of you who have managed to get your stories on radio and newspapers during the last year.

All of us from Breathing Matters hope you have a Happy and Healthy New Year !

 

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Thank You For Your Fundraising During 2016

We are truly indebted to all our fabulous supporters; we exist because of you!  Here are some of the amazing fundraising events you organised and helped with last year:

Cyclotopia Charity Cycle Event, Lee Valley Velodrome 12.6.16

Christmas Concert, St Paul’s Church, Covent Garden 9.12.16

Breathing Matters Charity Stalls x 6

  • Tough Mudder
  • London Marathon
  • Bundles of bike rides, including the Croydon to Torquay Cycle
  • Coast to Coast Walk
  • Ironman Austria
  • Yorkshire 3 Peaks
  • Skydives
  • Brighton Marathon
  • Bristol Half Marathon
  • Prudential 100
  • Zumbathon
  • Great North Run
  • Cyprus Half Marathon
  • Swim Serpentine
  • London 10K
  • Marlow River Swim
  • Jersey Triathlon
  • Grim Reaper Ultra Marathon
  • Birthday party donations
  • Great Birmingham 10K
  • Panto … oh yes we did!

PLUS MANY MANY MORE!!!!