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2018 Roundup from our Medical Director

I would like to take this opportunity to reflect on another remarkable year for Breathing Matters.  As we reach our 8th year, many of the seeds that we planted in 2011 are bearing fruit.

Our cryoscopic lung biopsy service, allowing us to do relatively non-invasive lung biopsies, continues to flourish and has allowed many of our patients to have a biopsy taken, but avoid the 3 day hospital stay and side-effects of a surgical lung biopsy, by having it all done by ‘key hole’.

We have finally, after many different approaches, shown a role for platelets and blood clotting in pulmonary fibrosis and have some very exciting data that we are submitting for publication in 2019. We have gone on to show that anti-coagulation may have beneficial effects in patients with IPF and we are hoping to take this into a feasibility study in 2019. It will take some years before this has the widespread clinical impact that we hope as there are many hurdles still to negotiate, but I am confident that Breathing Matters will finally answer the question ‘should patients with pulmonary fibrosis be anti-coagulated routinely?’.

However, our major achievement in 2018 in pulmonary fibrosis was the publication of our study of FDG-PET scans in IPF patients, followed for 10 years.  In this tour-de-force that over 150 of our patients took part in, we showed that FDG-PET scans can predict how well individual patients do over time and are able to refine the current scoring systems based on age and lung function. This work has led on to the major pre-occupation of the last few months which has been the submission of a funding request for £400,000 to the National Institute of Health Research to see if FDG-PET can predict which patients should be treated with the drug, nintedanib or pifenidone or neither, and whether using the information from PET scans can improve the quality and length of patients’ lives – which is our ultimate goal.

A potential new vaccine against Streptococcus pneumoniae, the commonest cause of pneumonia – Streptococcus pneumoniae is the commonest cause of pneumonia, and vaccines to prevent infections by this bacteria are very important for preventing lung infections both in infants and in adults (the elderly and those with chronic lung diseases such as asthma, bronchiectasis, COPD, and interstitial lung disease). However, there is still a need for a better vaccine that is cheaper and effective against all S. pneumoniae strains rather than just a proportion. Making the most effective S. pneumoniae vaccines is expensive as it requires multiple chemical steps that each need to be very carefully controlled to ensure they have worked properly.   Professor Brown’s group, in collaboration with Professor Wren from the London School of Hygiene and Tropical Medicine, have now shown in a recent scientific paper that an effective vaccine can be made using genetically engineered bacteria, a much simpler and cheaper method.  Furthermore, they also have shown that the vaccine could protect against many more strains than the existing vaccine.  It is hoped that this paper will stimulate investment in the new vaccine approach and eventually lead to the introduction of cheaper but better S. pneumoniae vaccines to help prevent lung infections.  Reglinski et al. ‘A recombinant conjugated pneumococcal vaccine that protects against murine infections with a similar efficacy to Prevnar-13.’  NPJ Vaccines, in press 2018

New study for bronchiectasis patients – Prof Brown’s research group has started a new study for patients with bronchiectasis, mainly for patients who have developed bronchiectasis as a consequence of a haematology disease or are receiving rituximab. The aim of the project is to investigate the effects of antibody deficiency on how the immune system is able to recognise and control Streptococcus pneumoniae infections. The study is being done by Dr Hall and Dr Jose and involves measuring antibody and white cell recognition of S. pneumoniae in volunteers before and after an injection of dead S. pneumoniae into their forearm.  Dr Hall will be contacting patients with bronchiectasis who may be suitable for this study to describe in more detail what it involves.

Bronch UK update – we have now recruited 110 patients into the Medical Research Council funded Bronch UK study; well done to Dr Hall and Joel Solis (research nurse) for reaching this target, and thank you for all the patients who have volunteered to take part. The data from this study will be essential in designing future trials of new therapies or ways of managing bronchiectasis.

I would like to thank you all for your support over the year in what has been an uncertain and challenging time for many of you.  With your support, Breathing Matters has continued to excel by focusing on our core mission.

Professor Jo Porter, Medical Director of Breathing Matters.

 

 

 

 

 

A Festive Feast of Singing

We were treated to a fabulous festive feast of melody and harmony as the tremendous Holst Singers entertained us once again at our Annual Charity Christmas Concert.  Michael Waldron conducted the choir beautifully and Laurence Williams accompanied on the organ in this splendid historic St Pancras Church in Euston.

Highlights included ‘The Lamb’ by John Taverner, ‘The Three Kings’ by Martin Neary, and of course there was lots of audience interaction with traditional carols, with ‘O Little Town of Bethlehem’ a particular favourite.

We were fortunate to be joined by the Charlotte Green and Brian Perkins, famous names from BBC Radio, who gave fabulous readings.

A massive thank you to Jane Walker who tirelessly organised the concert, and thanks to every volunteer that helped out, as well as Profile Pharma who sponsored the event.  

What a fabulous start to the Christmas season!

The Perfect Christmas Present – An Experience and a Charity Present All In One

Finding it hard to find the PERFECT CHRISTMAS GIFT?

Why not buy an EXPERIENCE – a fabulous fun night out full of laughs, singing, and dancing at the Breathing Matters Charity Silent Disco – combining an Exprience and a Charity Christmas pressie at the same time!!!

What a great gift – and no cardboard or plastic to recycle afterwards!

Tickets are now on sale for the charity silent disco at the iconic Steam Museum at Kew Bridge, Brentford – Friday 1st March 2019, 7.30pm-11.30pm.

Tickets are only £25, but why not share a bit of Christmas love and buy our VIP TICKETS at £49 each: https://bmcharitysilentdisco.bpt.me

All profits go to Breathing Matters UCLH Charity #1165398 [www.breathingmatters.co.uk]

Autumn 2018 Newsletter – Air Pollution Special

For the Autumn 2018 newsletter, please click here

 

Autumn 2018 Newsletter – Answers to Pollution Quiz

 

Q: What % of Londoners live in areas exceeding the World Health Organisation recommended pollution levels?

A: 95%

 

Q: What is PM2.5?

A: PM2.5 refers to atmospheric particulate matter (PM) that have a diameter of less than 2.5 micrometers, which is about 3% the diameter of a human hair. Commonly written as PM2.5, particles in this category are so small that they can only be detected with an electron microscope.  Since they are so small and light, fine particles tend to stay longer in the air than heavier particles. This increases the chances of humans and animals inhaling them into the bodies.

 

Q: Which of the following can you do to help decrease levels of pollution?

  • Reduce car journeys.
  • Keep house temperature down.
  • Walk more.
  • Campaign for change.
  • All of the above.

A: All of the above.  Please do your best not to add to the pollution.

 

Charity Christmas Concert 7.12.18 – Get Your Ticket

Not long to our fabulous Christmas Carol Concert with the Holst Singers.  This popular concert will be taking place at a NEW VENUE this year, ST PANCRAS CHURCH in Euston on Friday, 7th December 2018 at 7.30pm.

St Pancras Church is a beautiful historic building which is 200 years old and has a Grade I listing from English Heritage, as an important early example of the Greek Revival architecture.  It is located opposite Euston Station and is a short skip and a hop from UCL and UCLH, and we are really excited to secure this new venue.

The Christmas Celebration will feature well-known traditional carols as well as more contemporary Christmas music.  The Holst Singers are one of Britain’s foremost choirs, described by the BBC as a leading chorus on the international stage. In concert, the choir is renowned for dramatic and engaging performances, described by The Times as interactive concert going at its most revelatory, while the BBC Music Magazine states that The Holst Singers sing with a ‘spell bounding sense of atmosphere and crystal-clear textures……..supremely musical’.

Our guest readers this year are well known BBC Presenters Charlotte Green and Brian Perkins. Charlotte Green has been a familiar voice on the radio for many years, including as a news reader for the Radio 4 Today programme, the presenter for the comedy programme The News Quiz, and currently as the reader for Quote….unquote. In 2013, she joined Classic FM and BBC Radio 5 Live, where she announces the football results. Brian Perkins was a senior news reader until 2003 and was a familiar voice on Radio 4 for many years.

There will be wine and mince pies available before and after the concert and during the interval.  Doors open at 7pm.

For tickets (£25) and further information, please contact Jane Walker tel: 01732 366346 or email missjanewalker@hotmail.com

 

Tickets are also available online from: https://bmholstsingersconcert.bpt.me

We hope you are able to join us for a feast of seasonal music and a most wonderful start to the festive season!

Donation received from Profile Pharma, towards the costs of staging this concert

2018 Respiratory Health Campaign Launches 21.11.18

Breathing Matters has worked with Mediaplanet UK on the 2018 Respiratory Health campaign, launching 21st November 2018.

A printed publication is enclosed within every copy of ‘The Guardian’ newspaper on launch day and the content will be available to view online at http://www.healthawareness.co.uk/respiratory

Read exclusive content from The London Mayor, Asthma UK and The British Lung Foundation.

 

 

Silent Disco – Such Fun!

‘Such fun!’ was the most used quote at the end of our silent disco;  ‘When’s the next one?’ was the next.

Non-stop dancing, laughter and strained singing … yes, that’s what a silent disco is all about!  Everyone was boogying … and I mean everyone – from the volunteers in the foyer, the bar staff and each and every person who attended!  There’s something about dancing with headphones on that brings you back to your youth, that keeps those inhibitions away, that makes you sing at the top of your voice and that makes you dance like no-one is watching.

The engines in the London Museum of Water and Steam looked magical in the lights, giving the atmosphere a haunting, awe-inspiring quality.  Thank you to Knight Sounds and Vision for their help with the transformation.

Thank you to Birdie catering and the fabulous, fabulous staff at the museum, especially Christina and Joanna, who helped plan the event.

A massoff thank you goes to all the volunteers who worked all night to ensure everyone had fun, and to Molly Livermore, our official photographer.

But the biggest thank you must go to the DJs – Stu, Matt, Rosie and DJ Strawberry Delight – who gave their time freely and kept the joint jumping.

The lovely Ruth won £50 in our Money Share Game. ‘That’s made my week’, she said.

A fabulous £2,500 was raised for Breathing Matters which will go towards important research into pulmonary fibrosis and infection at UCL Respiratory.

Watch out for next Spring’s date if you want to join in the fun!

 

 

Let Off Steam at our Silent Disco

If you haven’t been to a silent disco before, you don’t know what you’re missing.  This concept is straight out of the festivals and sweeping across the UK and is becoming more and more popular. This is your chance to experience a silent disco in an awesome setting. And for a fantastic cause too!

DJs do battle over separate wireless channels, playing the best in disco, 80’s and guilty pleasure classics. Don a headset and choose your favourite tune. No distraction – just dance!

The silent disco is on Friday, 9th November 2018 at 7.30pm till late at the London Museum of Water and Steam.

This museum, based right beside Kew Bridge, is an iconic and historic building, housing fabulous working engines from times gone by.

This is a unique opportunity to explore the museum after hours.

Why not make it extra special and be a VIP for the evening – VIP guests will enjoy:
– Complimentary prosecco [half bottle].
– Canapes.
– Exclusive raised gallery with a fantastic view of the steam hall.
– Private seating area.
– Unfortunately, no wheelchair access for VIP guests.

Need to know:
– Print out tickets or show on mobile. No ticket: no entry.
– Cash only bar.
– Bring change for the cloakroom (£2.50).
– Bring cash for a chance to win big money in our Money Share game.
– Nearest station: Kew Bridge (few mins’ walk), South Western Railway.
– Directions: www.waterandsteam.org.uk/plan-your-visit
– Free car parking for 20 cars; first come first served. There is one dedicated parking space for orange or blue badge holders.
– Wheelchair access for standard tickets only.
– Free WiFi

Don’t delay, buy your tickets here

[Donations gratefully received from Bates Group and Sainsbury’s Warren Street towards the cost of this event.]

 

 

Organ Donation – Talk About It

Organ Donation Week is 3-9 September 2018.

Three people die around the UK each day while waiting for an organ and 1,255 people are on the waiting list in London alone.  Sadly, many donation opportunities are lost every year because families don’t know if their loved one wanted to be a donor or not. Family support is crucial to enable donations to take place.

Anthony Clarkson, interim director of organ donation and transplantation for NHS Blood and Transplant said: “Words save lives. Please, tell your family you want to save lives through organ donation because it could be the difference between life and death for someone else.”

Please find time to have this life-saving discussion with your family.

For more information and to join the NHS Organ Donor Register, click here