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Visit our new Justgiving page

Breathing Matters has a brand new Justgiving page.  We have transferring to a campaign page under the UCLH Charity Justgiving Page.  The new link is: https://www.justgiving.com/campaign/breathingmatters  This will save us on Justgiving fees for Breathing Matters, so more of your money goes directly to where it’s needed!

Please visit our new online donation page to donate, or to just have a look-see 🙂

Current open Justgiving pages on our old Justgiving Page will remain active, so you don’t need to do anything.

Together we can do more!

 

Royal Parks Half Marathon – Run for Breathing Matters

Arguably, one of the most stunning half marathons in the UK – the Royal Parks Half Marathon  showcases London’s iconic landmarks, including Buckingham Palace, the Houses of Parliament and the Royal Albert Hall running through the capital’s four Royal Parks.  This award-winning event is the only half marathon that goes straight through central London, and its flat course makes it ideal for both beginners and seasoned runners!

It starts and finishes in Hyde Park on Sunday, 13th October 2019.

The ballot has closed for this amazing event, but you can still run for Breathing Matters as we have places available through our charitable partner, Run for Charity.  More information at: https://bit.ly/2U1En6I

Entry fee £50

Minimum pledge £450

To sign up, email us at breathingmatters@ucl.ac.uk

Register by 15th May 2019 to secure your place!

 

Prudential Ride London 100 2019 – Secure your place now

Are you a keen cyclist and want a serious challenge to plan for?  How about the Prudential Ride London 100 on Sunday, 4th August 2019?

Ride London really is a true gem of an event starting at the iconic Olympic VeloPark in Lee Valley, cycling 100 miles of closed roads past London landmarks and through the stunning Surrey countryside (and hills!) and finishing in champion-style at the Mall outside Buckingham Palace!  It’s the UK’s largest world-class festival of cycling.

You don’t have to be an elite cyclist, however, and can choose a start time based at your level – you just need to be able to finish the course in under 9 hours and be over 18.  More info for riders can be found here.

Breathing Matters has a number of guaranteed places for this year’s event.  Registration is £50 and we ask that you raise £450 for Breathing Matters.  Groups of up to 6 are welcome. To sign up, email us at breathingmatters@ucl.ac.uk

The deadline for registration is Tuesday, 1st May 2019, but we expect a lot of interest, so please don’t delay registering your interest with us to secure your place.

 

 

 

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.

 

 

 

 

 

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

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.]

 

 

Charity Christmas Concert

A Christmas Celebration with the Holst Singers

We are pleased to announce arrangements for our 2018 Christmas Concert with the Holst Singers in aid of bronchiectasis and lung infection research. The concert will be taking place at a NEW VENUE this year, ST PANCRAS CHURCH, Euston Road, NW1 2BA on Friday, 7th December 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 concert will feature well-known traditional carols as well as more contemporary Christmas music. The Holst Singers are one of Britain’s foremost choirs.  Our guest readers this year are well-known former BBC Radio 4 presenters, Charlotte Green and Brian Perkins.

The evening will comprise of a mixture of Christmas music performed by the choir, audience carols and seasonal readings.  There will be wine and mince pies available before and after the concert and during the interval.

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

 

 

Inspiring Students to become Scientists of the Future

The William Perkin story started with a child being fascinated by science – and setting out to ask ‘Why?’ and ‘What for?’  What a perfect school for a visit to inspire students to go into research.

Breathing Matters and Dr Pascal Durrenberger, a STEM ambassador and UCL Respiratory scientist, took part in the William Perkins CofE High School Founders’ Day celebrations on Friday 11th May 2018 as part of the Big Bang London Programme @ Schools Events.  The Big Bang programme actively helps promote STEM subjects throughout the UK (Science, Technology, Engineering, Maths).

Our workshop was called “The Lung Project”. Dr Durrenberger gave an inspirational talk to the students explaining how and why he got into science research.

We then had three main activities for the children:

  1. X-man Pneumatico (a ping-pong breathing game)
  2. Play Histologist (identifying lung diseases on microscope slides)
  3. Help the Lung Scientist (medical quiz).

There were points to win on all sessions and we gave out prizes to the students with the most points.

The Founders Day included many eminent scientists, including Lord Professor Robert Winston (of a ‘Child of our Time’ fame) and Professor Sara Rankin from Imperial College.

Feedback from the day was very positive with numerous students specifically mentioning our workshop: ‘The best thing I did today was… “Breathing session”. “Lung Workshop”.

A special thank you goes to Michelle Drew from Waterstones Piccadilly for donating books as prizes. Funding was also provided by Breathing Matters.

Cycling Matters at Cyclotopia

The sun shone over the Velodrome as over 100 riders enjoyed the bikefest of activities which can only mean one thing – Cyclotopia was back again!

Cyclists of all ages and abilities pedalled over the smooth traffic-free road circuit, challenged themselves on the bumpy mountain trail and sped around the Olympic Velodrome track, the fastest in the world.

The event brought in almost £6000 for Breathing Matters and Haematology Cancer Care, both UCLH Charities.

Thank you to our amazing volunteers, without whose help this event could not have taken place.  We are indebted to you all.

Thank you also to Jules Mountain who donated his book as prizes to our fastest cyclists, and to the amazingly professional staff at the Lee Valley VeloPark.

Finally, we thank our photographers Mark Mbm and Gerwyn Jones for the lovely photos:

 

Jewellery Stalls

Our Breathing Matters’ stall this Friday 4th May 2018 is going to be our first Jewellery stall. The handmade bead jewellery has been very kindly donated to us by the family of one of Professor Brown’s patients. The lady had bronchiectasis and very sadly she has recently passed away. During her illness, she took up bead making as a hobby and the family thought the most fitting tribute would be donate her jewellery in the hope it could be sold to raise funds for Professor Brown’s research into bronchiectasis and lung infection. There will be a selection of necklaces, earrings and bracelets for the first stall…..there are over 150 items in total. 

The stall will be in the UCH atrium from 11.00 until 1pm this Friday 4th May 2018. 

Do come along to support this stall if you are in the London area.  We are hoping that Friday will be the first of many jewellery stalls.