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Sign up for a great September challenge; deadline for registration 9.8.19

Breathing Matters has places at some amazing fun and adventurous challenges coming  up – BUT YOU NEED TO REGISTER BY FRIDAY 9th AUGUST 2019!!!

Descente London Duathlon events, Richmond Park, Sunday, 8th September 2019

This is the world’s biggest duathlon on closed roads in beautiful Richmond Park in South West London.

Our places are cheaper than those advertised on their site:

Their price Our price Fundraising
Full £88 £80 +£250
Half £82 £80 +£250
Relay £139 £100 +£250
Ultra £144.50 £100 +£250

We simply ask that you raise a further £250 for Breathing Matters per participant.

More info on the event is at https://londonduathlon.com/

 

Finsbury Park Rough Runner – a Fun Obstacle Course for all Levels, Saturday 7th September 2019 and Sunday 8th September 2019

The Rough Runner is a unique obstacle course challenge; bounce on big balls and climb your way through the extraordinarily fun course before taking on the energy sapping travelator.

You can choose from the 5K or 10K course.

What others say:

  • “Loved every second of it! The course was fun and not all the obstacles were challenging so overall was a very fun experience!”– Chelsie
    “Had a very fun time for our first even like this, even though we don’t run a lot it was a lot of fun and wasn’t too competitive.” – Brandon

Places with Breathing Matters are £40 and we ask that you raise at least £60 per runner.

If you want to register for any of these challenges, email breathingmatters@ucl.ac.uk but don’t delay registration deadline is 9th August 2019.

 

Get Out of Breath for #Breathtember

 

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 colourful or musical 5K/10K run or walk
  • Singing until you are out of breath
  • Walking over the wondrous London bridges
  • Blowing bubbles … or windmills!
  • Skydiving
  • 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 see the term ‘#Breathtember’.

Follow us on Twitter for further details: @Breathingmatter 

twitter

 

 

SUMMER SALE on global adventure challenges – grab a bargain for 2020!

Global Adventure Challenges are giving our supporters a fabulous 20% off registration for all UK and overseas challenges in 2020.

This offer is valid until the end of July 2019.  You need to quote ‘SUMMER20’

 

Here are a few examples, but there are many, many more to choose from:

  • Vietnam to Cambodia Cycle
  • Sahara Desert Trek
  • Great Wall of China Trek
  • India Cycle Challenge
  • Snowdon at Night
  • The Alps Trek
  • Lapland Husky Trail
  • Yorkshire 3 Peaks
  • Wales End to End
  • Land’s End to John O’Groats Cycle
  • London to Paris Bike Ride

A full list of challenges can be found at: https://bit.ly/2WuJOJM

Grab a bargain … you know you want to!

 

 

 

 

 

Fireworks – Have your say

The House of Commons Petitions Committee is currently looking at the use of fireworks following a number of petitions about fireworks over the last three years.  A recent petition signed by nearly 300,000 people calls for a ban on the sale of fireworks to the public, and for fireworks displays to be restricted to licenced venues.

If you have a respiratory condition and have been impacted by fireworks, then you might be interested in attending the Petitions Committee on Fireworks on Tuesday, 2nd July 2019 at 7pm at Westminster.

At this event, you will be asked how fireworks affects your respiratory condition.  The Committee is keen to hear about people’s experiences and thoughts on potential solutions to addressing health concerns around the use of fireworks. Your views will help shape the Committee’s thinking on this topic. 

For more information and to register your interest in attending this event, please visit https://www.eventbrite.co.uk/e/petitions-committee-fireworks-event-2-july-tickets-62221407906

 

 

 

Who Wants To Be A Superhero for the Day – New 5K Run in the City of London

Would you like to be a real superhero?

Would you like to dress up as a superhero and run 5K through the City of London along the Thames?

Then – ‘Superhero in the City’ will be right up your [London] street!

This fun inaugural race event is on Thursday 13.6.19 at 7pm. It starts at the North side of the Millennium Bridge, via the Southbank, then crosses back over Southwark Bridge and continues along the North Embankment towards St Paul’s Cathedral.

It’s the first race of its kind and we just know that this will be a popular event for years to come.

Why not be the first to be a Superhero this year!

Breathing Matters has places for £24 each. But don’t delay, you need to register by 20.5.19 to guarantee your place: https://bit.ly/2GOk9V6  We just ask that you raise £50 for Breathing Matters towards our valuable research.

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