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Online Christmas Concert with The Holst Singers, December 2021

We are unfortunately not able to hold our usual Christmas concert again this year in light of the COVID-19 pandemic, but we are delighted that The Holst Singers, as last year, are recording a selection of traditional carols and seasonal music for us to share and bring us all together during the festive season.

The concert recording link will be available to download from the Breathing Matters website from mid-December and we will also be posting a link for our Christmas Concert JustGiving page – all the profit from the donations received will go towards Professor Brown’s research into bronchiectasis and lung infection.

For further information about this year’s online Christmas Concert please email Jane Walker – missjanewalker@hotmail.com

If you’ve not attended one of our ‘live’ concerts in previous years, please do download the link and have a listen to the Holst Singers – they really are a superb choir!!

Here is an excerpt from last year’s recording to whet your appetite: https://bit.ly/3aA4Bnt

 

Tweet for #Breathtember, PF awareness month

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 virtual 5K/10K run or walk
  • Singing until you are out of breath
  • Walking over the wondrous London bridges
  • Blowing bubbles … or windmills!
  • 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 get to know what Pulmonary Fibrosis really means.

Follow us on Twitter @Breathingmatter 

Article in The Guardian Respiratory Health Supplement

Professor Jo Porter, our Medical Director, has had an article published in the Respiratory Health Supplement in The Guardian today (22.6.21), explaining research into the impact of COVID-19 on lung fibrosis

This is what Prof Porter had to say:

A study is underway to assess the impact of COVID-19 on lung fibrosis development.  Interstitial lung disease (ILD), or lung fibrosis, diagnosed by CT scan, causes difficulty breathing by affecting the delicate membrane separating the blood and air in the lungs.  Joanna Porter, Professor of Respiratory Medicine at University College London, says there are more than 200 causes of ILD, including asbestos, mould, feathers, underlying conditions such as rheumatoid arthritis, and infection.  COVID-19 infection may be the latest contributor to ILD development.

COVID-19 impact – Dividing her research role with clinical work as head of the national NHS centre for ILD at University College London Hospitals, Professor Porter says there are an estimated 16,000 new ILD cases per year but this could be an underestimate as some people may not know they have the disease.  Specialists agree that current evidence is limited, however there is concern regarding the impact of COVID-19 on ILD and lung fibrosis patients. What is known is that patients with the most severe form of ILD – idiopathic pulmonary fibrosis (IPF) – do less well if they catch the virus.  The UK ILD Post-COVID Study is now following up hospitalised and non-hospitalised post-COVID patients to see how many develop a new ILD as a result of SARS-CoV-2 infection.  This UKRI funded multicentre study will look at patients in the PHOSP study who had a CT scan three months after their initial infection and compare that with their 12-month follow-up scan to identify ongoing and resolved issues.  Although we do not know the final figures, unpublished preliminary data from UCLH suggest around 4% of patients may be affected.

Professor Porter is also Medical Director of Breathing Matters, a UCLH charity, dedicated to finding a cure for all forms of ILD/pulmonary fibrosis. She points out that anything we learn from post-COVID ILD will almost certainly help other patients with lung fibrosis. Breathing Matters has continued vital research throughout the pandemic to address these critical questions.

Read the full Respiratory Health Campaign to find out more about key respiratory conditions, new innovations and the importance of good air quality

You can also read more on the online campaign at healthawareness.co.uk/respiratory

 

How COVID-19 Is Helping Research Into Pulmonary Fibrosis?

The interstitial lung diseases (ILDs) are a group of over 200 different diseases that may result in lung inflammation or (in the worst case) pulmonary fibrosis (PF). There are many different aetiologies for ILD/PF and in some cases, we do not know the cause, so called ‘idiopathic’.

One of the questions that we at Breathing Matters want to answer is – can COVID-19 give you pulmonary fibrosis? There are a few clues that this might be the case. Other coronaviruses such as Severe Acute Respiratory Syndrome (SARS) or Middle East Respiratory Syndrome (MERS) have been reported to cause PF in a small percentage of patients, but of course the numbers of patients affected by SARS-CoV-2, the virus that causes COVID-19, will be much greater so, even if only a small percentage are affected, the numbers may still be very large. The diagnosis of ILD/PF is suggested by a clinical finding of breathlessness and abnormal lung function. The diagnosis is then confirmed with a CT scan of the chest.

Initial studies from China, Italy and the UK have remarkably similar findings. Of patients with COVID-19 discharged from a hospital in China, nearly half had abnormal lung function (Mo X, et al. European Respiratory Journal 55: 2001217, 2020).  Data from Leeds of patients with COVID-19 discharged from hospital showed that the majority (75% of those admitted to intensive care, and 65% of those admitted to the regular wards) still suffered from fatigue at 6 to 8 weeks post discharge. The number suffering from continual breathlessness was also high (70% of those admitted to intensive care, and 45% of those admitted to the ward).  (Halpin S et al. Journal Medical Virology, First published: 30 July 2020, DOI: (10.1002/jmv.26368).  An Italian study from Rome found that at 60 days around 55% of patients were suffering from fatigue and 40% from breathlessness.  It is unclear what is the cause of these high levels of breathlessness, but a study from Austria is following their patients up in more detail at 6, 12 and 24 weeks after discharge. So far, they have found that at 6 weeks 47% of patients are short of breath and this falls to 39% at 12 weeks. In addition, 33% have abnormal lung function suggestive of lung fibrosis, but this falls to 22% at 12 weeks. Of course, to diagnose lung fibrosis requires at CT scan of the chest and they found that CT scans suggested an interstitial lung disease (ILD) or lung fibrosis in 88% falling to 56% at 12 weeks. However, it is also important to know how much of the lung is affected, and many of the studies do not clarify this, but just comment on whether ILD is present or not. The result is that it is hard to know whether these patients had minimal or significant ILD changes on the CT scan. Clearly, Breathing Matters will be looking out for the 24 week data.

Our own experience is that of around 800 patients seen at UCLH with COVID-19, in the first wave approximately 4-6% have persistent or slowly resolving CT changes at 12 months suggestive of interstitial lung involvement. The incidence of ILD may be less in subsequent waves because of the wider use of the steroid, dexamethasone, in patients with COVID-19 pneumonitis. Currently, our main priority is to analyse the scans of 20,000 patients who were hospitalised with COVID-19 and are taking part in the national PHOSP study, to see how common the development of ILD/ PF is in a much larger group of patients.  We will also look at 10,000 patients who had COVID-19 but were not hospitalised. This study funded by UKRI is a multicentre study that will look at the incidence of post COVID-ILD, investigate how much of the lung is affected and what the critical contributory factors are. It may be that this virus and the enormous numbers of patients that have been infected will shed some light on the pathogenesis of other ILD/PF diseases.​

We will keep you informed of any new findings.

 

Out now – our May 2021 Newsletter

May 2021 Newsletter – Top 10 Quiz Answers

Top 10 selling [physical] singles of all time:

  1. White Christmas – Bing Crosby, 1942
  2. Candle in the Wind – Elton John, 1997
  3. In the Summertime – Mungo Jerry, 1970
  4. I Will Always Love You – Whitney Houston, 1992
  5. Rock Around the Clock – Bill Haley & His Comets, 1954
  6. It’s Now or Never – Elvis Presley, 1960
  7. We Are the World – USA for Africa, 1985
  8. If I Didn’t Care – The Ink Spots, 1939
  9. Yes Sir, I Can Boogie – Baccara, 1977
  10. My Heart Will Go On – Celine Dion, 1997

Top 10 selling [digital] singles of all time:

  1. Shape of You – Ed Sheeran, 2017
  2. Despacito – Luis Fonsi featuring Daddy Yankee, 2017
  3. Spotlight – Xiao Zhan, 2020
  4. Work – Rihanna featuring Drake, 2016
  5. Something Just like This – The Chainsmokers and Coldplay, 2017
  6. Perfect – Ed Sheeran, 2017
  7. See You Again – Wiz Khalifa featuring Charlie Puth, 2015
  8. Closer – The Chainsmokers featuring Halsey, 2016
  9. Rolling in the Deep – Adele, 2011
  10. Uptown Funk – Mark Ronson featuring Bruno Mars, 2014

Highest grossing films of all time

  1. Avatar – 2009
  2. Avengers: Endgame – 2019
  3. Titanic – 1997
  4. Star Wars: The Force Awakens – 2015
  5. Avengers: Infinity War –  2018
  6. Jurassic World – 2015
  7. The Lion King – 2019
  8. The Avengers – 2012
  9. Furious 7 – 2015
  10. Frozen II – 2019

Top 10 bestselling fiction books of all time:

  1. Harry Potter and the Philosopher’s Stone, JK Rowling – 1997
  2. The Little Prince, Antoine de Saint-Exupéry – 1943
  3. Dream of the Red Chamber, Cao Xueqin – 18th century
  4. The Hobbit, JRR Tolkien – 1937
  5. And Then There Were None, Agatha Christie – 1939
  6. The Lion, the Witch and the Wardrobe, CS Lewis – 1950
  7. She: A History of Adventure, H Rider Haggard – 1887
  8. The Adventures of Pinocchio (Le avventure di Pinocchio), Carlo Collodi, Italy – 1881
  9. The Da Vinci Code, Dan Brown – 2003
  10. Harry Potter and the Chamber of Secrets, JK Rowling – 1998

Top 10 bestselling author of all time:

  1. William Shakespeare
  2. Agatha Christie
  3. Barbara Cartland
  4. Danielle Steel
  5. Harold Robbins
  6. Georges Simenon
  7. Enid Blyton
  8. Sidney Sheldon
  9. JK Rowling
  10. Gilbert Patten

[Answers taken from Wikipedia]

 

 

Virtual London Marathon – Places Available!

The VIRTUAL Virgin Money London Marathon returns this October 2021, giving you the chance to take part in this year’s Guinness World Record-breaking attempt!

General entry is now sold out.  The only way to be a part of the world’s biggest-ever marathon is to secure a charity place, and Breathing Matters is lucky to have a few coveted places.

Whilst 50,000 runners are running the traditional London Marathon from Blackheath to The Mall, a further 50,000 runners in the virtual event will be running the same distance, just in a place of their choosing!  Last year’s Virtual Virgin Money London Marathon, which was held for the first time in 2020, was awarded an official Guinness World Records title for the Most users to run a remote marathon in 24 hours’ at 37,966 runners.  The organisers want to smash this record in the 2021 race – and if they do, every runner will have the opportunity to claim their official world record certificate.

Run 26.2 miles on your own course over 24 hours – Your Run Your Way!

  • Date:            Sunday 3rd October 2021, 00:00:00 to 23:59:59
  • Where:         Anywhere
  • Register by: 16th July 2021
  • Entry:            £20 plus £200 sponsorship

Email breathingmatters@ucl.ac.uk to sign up now.

Don’t miss your chance to become a world record holder!

 

Check out the London Marathon Training Hub

Be proud to run for Breathing Matters and wear one of our running vests or T-shirts, available from our online shop

Are NETS the link between COVID-19 and ILD?

In response to the COVID-19 pandemic, researchers are investigating how the virus causes lung damage, in order to help identify treatment strategies. There is some overlap between the mechanisms being studied in COVID-19 and Interstitial Lung Disease (ILD).  One of these is the production of structures known as ‘NETs’ in the lungs. A clinical trial currently led by Professor Porter at UCL aims to understand whether targeting these NETs improves outcomes for COVID-19 patients. This continues a line of work investigating the role of NETs in ILD.

NETs is short for Neutrophil Extracellular Traps. They contain DNA, enzymes, and proteins, and are produced by the neutrophil (a white blood cell) to fight infection.  The role of NETs in COVID-19 pneumonia is also under investigation. A study published last year showed that some of the markers of NETs used in Professor Porter’s ILD study were found in blood samples from COVID-19 patients (2). The levels of these markers correlated with other blood tests known to signify inflammation. Furthermore, adding blood samples from patients with COVID-19 to healthy neutrophils in the lab caused them to produce NETs. This could mean that NET production is related to lung damage in patients with COVID-19 pneumonia.

Further research is needed to determine whether NETs are a cause or by-product of lung damage in these diseases. However, knowing that NETs are associated with severe COVID-19, and that they are present in the lungs of patients with ILD, means that they could be used as a ‘biomarker’ – a molecular signal of lung damage. Promisingly, it could mean that reducing the activity of NETs in the lungs is a potential treatment strategy in the future.

The crossover between NETs in COVID-19 and ILD demonstrates the importance of ongoing research in this field. The team at UCL Respiratory are incredibly grateful for the support of Breathing Matters in helping to facilitate this research.

If you would like to help us continue our important work, please support us at: https://bit.ly/2HFVW5p

 

References:

  1. Khawaja AA, Chong DLW, Sahota J, Mikolasch TA, Pericleous C, Ripoll VM, Booth HL, Khan S, Rodriguez-Justo M, Giles IP, Porter JC. Identification of a Novel HIF-1α-αMβ2 Integrin-NET Axis in Fibrotic Interstitial Lung Disease. Front Immunol. 2020 Oct 15;11:2190. doi: 10.3389/fimmu.2020.02190. PMID: 33178179; PMCID: PMC7594517.
  2. Zuo Y, Yalavarthi S, Shi H, Gockman K, Zuo M, Madison JA, Blair C, Weber A, Barnes BJ, Egeblad M, Woods RJ, Kanthi Y, Knight JS. Neutrophil extracellular traps in COVID-19. JCI Insight. 2020 Jun 4;5(11):e138999. doi: 10.1172/jci.insight.138999. PMID: 32329756; PMCID: PMC7308057.

 

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.