12th Birthday Message

We would like to celebrate our 12th Birthday with you by presenting our top highlights.

 

1: Meeting 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 four 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. She initiated our work into finding a blood test predictor for personalised patient therapy.
  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 and is also looking at how COVID-19 affects the lungs and may lead to PF in a small percentage of patients.
  4. Whitaker Clinical Fellow – Dr Hannah Torlot, who carried on our work with novel molecular imaging to see if we could find a way of identifying those patients that were responding to treatment early. This will allow us to reassure patients early on that medication is making a positive difference; change treatments that aren’t working; and help us fulfil our goal of getting the right treatment to the right patient at the right time.

The work that our Clinical Fellows have done is vital and has enabled us to leverage a further £1.3M in grants.

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 a radiologically normal lung on CT scan. 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. In particular, we are looking at very high resolution imaging in patients and controls with a Muc5B genetic variant which is present in 20% of us and increases our chances of PF by 1200%. By understanding the early imaging changes that this variant produces, we can maybe understand more about the mechanism by which PF is increased in carriers of the gene.

One of our largest studies involving nearly 1000 patients, showed that a simple neutrophil/lymphocyte ratio derived from the full blood count (a very common blood test that we have probably all had) will tell us how much individuals are at risk from rapidly progressive lung fibrosis – an important pioneer towards personalised therapy.

4: Pioneering Diagnostics – Cryoscopic Lung Biopsy

Our Lawrence Matz Clinical Fellow set up the Cryoscopic Lung Biopsy Service at UCLH, a pioneering minimally invasive diagnostic technique.  The cryo-probes were part-funded by Breathing Matters.  Ten years ago, 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 for research 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 a radiologically normal lung on CT scan. 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. In particular, we are looking at very high resolution imaging in patients and controls with a Muc5B genetic variant which is present in 20% of us and increases our chances of PF by 1200%. By understanding the early imaging changes that this variant produces, we can maybe understand more about the mechanism by which PF is increased in carriers of the gene.

One of our largest studies involving nearly 1000 patients, showed that a simple neutrophil/lymphocyte ratio derived from the full blood count (a very common blood test that we have probably all had) will tell us how much individuals are at risk from rapidly progressive lung fibrosis – an important pioneer towards personalised therapy.

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 160 recruits!

Breathing Matters 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 tried to reach 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.

In 2021, we introduced our online shop where you can buy our merchandise for gifts or events, along with partnering with a charity card shop so you can help spread the word too.  

8: FUNdraising and FUNdraisers

Breathing Matters has had some amazing and innovative fundraising challenges since its launch.  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.  Since 2014, we have held an annual Christmas Concert (these had to revert to online carols in the past few years).  Keeping ahead of the curve, our charity silent discos at the London Steam Museum were a big hit and 2020 introduced a new way of fundraising virtually.

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: Keeping [You] Up-To-Date

We redesigned our new engaging website and logo in 2011 to reinvigorate our efforts to raise awareness and drive donations, with up-to-date information and guidance as well as updates on our latest research.

We kept with our philosophy to keep our charity small so we would have little overheads, enabling all your hard-earned fundraising and donations to be funnelled into our vital research.  In 2020, 98.9% of your donations went direct to fund our innovative research projects.

Your donations go further with Breathing Matters.

11: Your Support

You, our supporters, have helped us achieve so much. We would be nothing without you!

Thank you all.

 

[Posted January 2023}

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