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Is Sputum the Answer to IPF or are we just MUC-king around?

Lung disease will contribute to the death of 1 in 5 people. Many people suffer from chronic lung disease that impacts on their ability to function on a daily basis. Many chronic lung diseases such as idiopathic pulmonary fibrosis (IPF) and bronchiectasis are characterised by the presence of excessive numbers of white blood cells or leukocytes that are recruited to the lung from the blood stream.

In particular, the white blood cells, called neutrophils, are recruited at the earliest signs of lung damage.  In small numbers, these neutrophils are essential to fight infection, but in larger numbers, or in more activated forms, they may cause damage to the lung, especially if they deploy their anti-microbial activity before they cross into the airspace.

Before reaching the airspace in which inhaled pathogens are encountered, the neutrophils must pass across the airway epithelium and then they come into contact with the layer of airway mucus that protects the airway from infection.  We propose that the epithelial-mucus barrier acts as a checkpoint to prime neutrophil function in health, so that neutrophils are only fully activated once they have passed across the epithelium, thereby limiting collateral damage.

However, patients with IPF have higher numbers of neutrophils in their broncho-alveolar lavage (BAL) fluid and this also correlates with severity of disease. Furthermore, a genetic mutation that increases the amount of Muc5B, one of the airway mucins, has been identified as a risk factor for developing IPF (either sporadic or familial). Muc5B has been implicated in inducing neutrophils to expel fibres of DNA called neutrophil extracellular traps (NETs) and in our preliminary data, is a strong chemoattractant for neutrophils.

Dr Jagdeep Sahota has applied to the Medical Research Council to carry out a project will allow us to identify factors that alter the behaviour of neutrophils as they migrate through the lungs to eradicate infection and the role of MUC5B and TGF beta (a profibrotic cytokine implicated in the development of IPF).  Dr Sahota has been able to develop preliminary data using funding from Breathing Matters.  Her ultimate aim is to develop novel targeted therapies to reduce neutrophil mediated lung damage whilst maintaining effectiveness against infection. These therapies may be applicable to other chronic lung diseases.

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2017 Roundup – What You Helped Us Achieve

We would like to thank to you all for your loyal support over the last year and for giving so much of your time and funds.  Since our launch in January 2011, you have helped us raise £500K – without you, this simply would not have been possible.  We thank you!

So, what have we done with all your raised funds?  We have spent this wisely and here are a few important areas of research where your money has been focussed in 2017:

  • We recruited a fabulous clinician, Dr Helen Garthwaite, to be our Mark Hulme Clinical Fellow. Helen has pioneered the use of anticoagulation in IPF and has established the first clinical trial of directly acting antithrombin agent, dabigatran, in IPF. We have now started recruiting to this study and the first two patients have completed the trial. We hope that the results will be available shortly and may provide the impetus for a much larger study.
  • We held a patient and public event for IPF.  There were presentations on our research projects including our work on rheumatoid arthritis associated ILD, platelet and clotting in IPF, genetics of IPF and novel imaging in IPF.  We also met with old and new friends and established our research priorities for 2018.  We plan a much larger study of anticoagulation in IPF.
  • We completed our PET scan in IPF study which has been accepted for publication. This showed that PET scans are able to help us more accurately define the prognosis in patients with IPF.  A big thank you to the 112 patients with IPF that have given up their time for scanning over the last 5 years.
  • We published three papers on bronchiectasis which show that, although bronchiectasis is a pure lung disease, the ill-health it causes results in patients having a higher risk of diseases affecting the blood vessels in the heart and brain.

Leveraged funding: Importantly, the money that has been raised for Breathing Matters has allowed us to carry out some early seed projects. The results of these early studies have then allowed us to leverage an additional two million pounds from other sources including the Medical Research Council, The British Lung Foundation, The National Institute for Health Research and the Biomedical Research Centre since 2012.  This means that, for every pound contributed to Breathing Matters, we have leveraged another £4 that will all be put towards finding better treatments for patients.

It was lovely to see so many of you at our #Breathtember Patient/Supporter Pulmonary Fibrosis/Interstitial Lung Disease Focus Group in September and our Patient/Supporter Bronchiectasis Meeting in October. At the ILD event, Dr Porter along with our fabulous clinical fellows and scientists presented their integral and very interesting research work into PF and ILD. The ILD focus group discussed future areas of research into these conditions. The scientists loved meeting everyone at the ILD Meeting and one scientist said that meeting you helped ‘motivate us to do more and do it better and quicker’. At the Bronchiectasis Evening, Professor Brown explained what we know about bronchiectasis and what we still need to find out; and, importantly, how Breathing Matters can help. This was followed by a lively Q+A session when Professor Brown answered some in-depth questions on the treatment of the disease.

We have had two successful fundraising events in 2017, Cyclotopia and our Christmas Concert.

  • Cyclotopia is a bike fest of FUN events at the Lee Valley Olympic VeloPark from road cycling, mountain trail and track cycling.  It’s for all ages and experience. This year’s event is on Sunday, 20th May 2018 – mark it in your diary now.  Click here for news from last year’s Cyclotopia.
  • Our Christmas Concert is held in the iconic St Paul’s Actors Church in Covent Garden, which in itself is worth a visit. We are entertained by the renowned and internationally acclaimed Holst Singers and we also have celebrity readers. It is a fantastic way to start off the festive season  Watch out for next December’s date.  Click here for a roundup of last year’s concert.

If you haven’t attended these events yet, please consider coming along during 2018.  We are proud of these bespoke events; and, as they are so different, they should appeal to all of you!

Awareness is continuing to increase.  People are starting to notice pulmonary fibrosis and lung infection / bronchiectasis.  Let’s continue the good work.  Our supporters on the website, facebook and twitter have now increased to a potential 4000 supporters.  We need as many supporters as possible to help raise awareness of pulmonary fibrosis and lung infection, so asking your family and friends to like/follow us will help, and more retweeting too.  You might like to put our newsletters, leaflets, stickers or windmills on posterboards around your local area – we are always happy to provide these for you. Perhaps you could wear our stylish pin badges – email us to purchase these. Stories in the media are a fantastic way of raising awareness for Breathing Matters, and thank you so much to those of you who have managed to get your stories on radio and newspapers during the last year.

All of us from Breathing Matters hope you have a Happy and Healthy New Year !

 

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Challenge Yourself in 2018

Sometimes, a cycle at a national park, a coffee morning at your local cafe or a 10K run is just not enough of a challenge. Sometimes, you need to go further afield!

Breathing Matters has teamed up with Global Adventure Challenges who offer some amazing charity challenges. There are so many international challenges to choose from at www.globaladventurechallenges.com, but here’s just a few fabulous examples:

 

Nepal, Everest Base Camp Trek: 8-25.3.18, 15.11-2.12.18, 7-24.3.19, 14.11-1.12.19

Minimum sponsorship:

£399 + £3,750 + airport TAX (2018)

£449 + £3,750 + airport TAX (2019)

Self-funding:

£399 + £1,875 + airport TAX (2018)

£449+ £1,875 + airport TAX (2019)

 

Tanzania, Kilimanjaro, Machame Trail Trek: 11-12.10.18, 20-30.6.19, 19-29.9.19

Minimum sponsorship:

£449 + £4,100 + airport TAX (2018)

£475 + £4,150 + airport TAX (2019)

Self-funding:

£449 + £2,050 + airport TAX (2018)

£475 + £2,075 + airport TAX (2019)

 

China, Great Wall Trek: 12-20.5.18, 8-16.9.18, 19-27.10.18, many more in 2019

Minimum sponsorship:

£299 + £2,700 + airport TAX (2018)

£299 + £2,700 + airport TAX (2019)

Self-funding:

£299 + £1,350 + airport TAX (2018)

£299 + £1,350 + airport TAX (2019)

 

USA, Rock the Canyons: 12-19.5.18, 15-22.9.18, 11-18.5.19, 14-21.9.19

Minimum sponsorship:

£449 + £3,650 + airport TAX (2018)

£449 + £3,750 + airport TAX (2019)

Self-funding:

£449 + £1,825 + airport TAX (2018)

£449 + £1,875 + airport TAX (2019)

 

Morocco, Sahara Desert Trek: 15-20.2.18, 1-6.11.18, 14-19.3.19, 31.10-5.11.19

Minimum sponsorship:

£175 + £1,820 + airport TAX (2018)

£175 + £1,800 + airport TAX (2019)

Self-funding:

£175 + £910 + airport TAX (2018)

£175 + £900 + airport TAX (2019)

 

USA Yosemite to San Fran Cycle:  22-30.9.18, 21-29.9.19

Minimum sponsorship:

£449 + £4,550 + airport TAX (2018)

£475 + £4,600 + airport TAX (2019)

Self-funding:

£449 + £2,275 + airport TAX (2018)

£475 + £2,300 + airport TAX (2019)

 

India Cycle: 16-25.11.18, 15-24.11.19

Minimum sponsorship:

£299 + £3,000 + airport TAX (2018)

£349 + £3,000 + airport TAX (2019)

Self-funding:

£299 + £1,500 + airport TAX (2018)

£349 + £1,500 + airport TAX (2019)

 

Madagascar Cycle: 28.9-7.10.18, 27.9-6.10.19

Minimum sponsorship:

£399 + £3,600 + airport TAX (2018)

£399 + £3,800 + airport TAX (2019)

Self-funding:

£399 + £1,800 + airport TAX (2018)

£399 + £1,900 + airport TAX (2019)

 

London to Paris Bike Ride: 6-10.6.18, 15-19.8.18, 12-16.9.18

Minimum sponsorship:          £125 + £1,600 + airport TAX (2018)

Self-funding:                           £125 + £800 + airport TAX (2018)

 

Tour de France London to Paris Bike Ride: 25-29.7.18

Minimum sponsorship:          £149 + £1,630 + airport TAX (2018)

Self-funding:                           £149 + £815 + airport TAX (2018)

 

 

Lapland: Husky Trail Dog Sled:  22-29.3.19, 30.3-6.4.19, 7-14.4.19

Minimum sponsorship: £449 + £4,000 + airport TAX

Self-funding:                  £449 + £2,000 + airport TAX

 

Payment Plan

There are two ways of funding your challenge; minimum sponsorship or self-funding.

For payment option A – minimum sponsorship – You pay the non-refundable deposit (the first sum above) to Global Adventure Challenges.  This is used to organise your trip including securing airline seats and relevant permits. You then commit to raising the minimum sponsorship (the second sum above) for Breathing Matters.  You can set up a Justgiving Page from our home page (https://www.justgiving.com/breathingmatters) and 80% of the minimum sponsorship MUST be raised no later than ELEVEN WEEKS BEFORE DEPARTURE as this is when Breathing Matters will pay your challenge costs direct to Global Adventure Challenges.  Failure to raise this money may mean non-participation and cancellation of your challenge so it is important to raise your funds early.  The remaining 20% should be received no more than two weeks after your challenge finishes (we may ask for proof of offline pledges). We would be grateful if you could try and raise as much as you can over the minimum sponsorship target as every penny of this is what Breathing Matters will receive.  The more you raise, the more research work we can do and the more your challenge will have been worthwhile.

For payment option B – self-funding – You pay the non-refundable deposit (the first sum above) to Global Adventure Challenges which is used to organise your trip including securing airline seats and relevant permits. Ten weeks before departure, Global Adventure Challenges will invoice you for the balance (the second sum above) and this should be paid within two weeks; eight weeks prior to your challenge.  Although there is no minimum sponsorship target for this option, we would encourage you to raise as much as possible for Breathing Matters (via https://www.justgiving.com/breathingmatters). The more you raise, the more research work we can do and the more your challenge will have been worthwhile.

If all the above fills you with dread, why don’t you check out many more challenges including those closer to home in the UK, including Hadrian’s Wall Trek, Ben Nevis Trek, Lakes 4 Peaks, Edinburgh Night Ride and Coast to Coast cycle on www.globaladventurechallenges.com

Always Remember: Breathing Matters!

 

 

A Festive Feast of Singing

We had a fabulous evening last night at St Paul’s Actor’s Church, Covent Garden, for our annual Christmas Concert. We were entertained once again by the magical Holst Singers. The concert was sold out and the audience interaction almost brought the house down with popular renditions of ‘Hark! the Herald Angels Sing’ and ‘Once in Royal David’s City’.

Thank you to BBC Radio presenters, Nigel Rees and Charlotte Green who amused us with hilarious Christmas readings.

Thanks also to the fabulous volunteers who worked tirelessly to make the event go smoothly and to Pharma Profile who sponsored the concert.

But a very special thank you goes to Jane Walker who organised the concert and, if you look closely, you can see her singing along with the choir on one of the photos below!

What a wonderful evening to start off the Festive Season.

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Autumn 2017 Newsletter is OUT NOW

 

For our Autumn 2017 Newsletter, please click here

 

 

Show and Tell Meetings

We have been busy this autumn meeting our fabulous supporters and patients and presenting our research work.

We had two separate patient/supporter meetings; one for bronchiectasis, and one for pulmonary fibrosis to celebrate #Breathtember (Pulmonary Fibrosis Awareness Month).

At the Pulmonary Fibrosis/Interstitial Lung Disease event, Dr Porter along with our fabulous clinical fellows and scientists presented their integral and very interesting research work into PF.

Presentations included:

  • Dr Akif Khawaja:  The role of neutrophils in Interstitial Lung Disease: a novel target for treatment.
  • Dr Deborah Chong: The role of platelets in Interstitial Lung Disease.
  • Dr Theresia Mikolasch: The first UK non-invasive lung biopsy service.
  • Dr Theresia Mikolasch: Using Cryobiopsy to assess Inhaled drug delivery to the distal lung.
  • Dr Manuela Plate:  Can we use circulating DNA to tell us about genetic changes in the lung?
  • Dr Wes Wellard:  Finding new genetic mutations in patients with IPF.
  • Dr Jagdeep Sahota:  The role of mucins in IPF.

After lunch, the focus group discussed future areas of research into interstitial lung disease.

The scientists loved meeting you and one scientist said that meeting you helped ‘motivate us to do more and do it better and quicker’.

 

At the Bronchiectasis Evening, Professor Brown explained what we know about bronchiectasis and what we still need to find out. And, importantly, how Breathing Matters can help. This was followed by a lively Q+A session when Professor Brown answered some in-depth questions on the treatment of the disease.

We were also treated to Jane Walker’s personal and touching account of coping with her condition. Jane organises our annual Christmas Concert and we were lucky to have one of the Holst Singers along with a representative from Pharma Profile who has given a donation towards the costs of staging this concert, with us that evening.

It was so lovely to meet so many of you in person and we look forward to seeing many of you at our Christmas Concert at St Paul’s Church in Covent Garden on Friday, 8th December 2017.

These meetings show how Breathing Matters have helped research into both lung diseases since our inception in 2011, and it is thanks to all our fundraisers and donors that this has been achieved.

We could not have done this without your support – thank you!

 

New Bronch UK Bronchiectasis Study

Patients attending Professor Brown’s clinics who have bronchiectasis are now being recruited for a Medical Research Council funded study into bronchiectasis called Bronch UK.  This is the first study funded by the Medical Research Council into bronchiectasis for many years, and involves nine different centres across the United Kingdom including UCLH. The aim of the study is to describe the spectrum of disease caused by bronchiectasis, including the underlying causes, how severe the disease is and how it actually affects the patients’ quality of life.

In addition, the Bronch UK study has created a network of hospitals ready to do other research into bronchiectasis; for example, the Bronch UK network was used to obtain funding from the Health Technology Assessment scheme for a trial into how effective nebulized hypertonic saline could be in helping patients with bronchiectasis.

For the Bronch UK study, we aim to ask about 100 to 150 UCLH patients with bronchiectasis who are seen in Professor Brown’s clinics to take part.  Patients who agree to take part need to fill in a couple of health questionnaires, donate a blood and sputum sample, and give permission for the details of their condition to be used by the researchers.  There will be a repeat assessment of each volunteer participant in three years time, as that will allow us to identify what factors influence how patients fare over time.

So far at UCLH, we have recruited nearly 40 patients, and our very keen research nurse Joel Solis will be actively recruiting more patients for the study at the Friday morning clinics over the next few months.  He will usually send a letter to selected patients a few days before they are coming to clinic to ask whether they would like to be involved, and then talk to each patient in depth at the clinic itself.  Patients are selected randomly, and we would like to recruit about a third of patients coming to Professor Brown’s for the study. We hope to avoid volunteers for the Bronch UK study having to come back to the hospital outside of their appointment days by collecting the data and samples we need on the same day as the hospital appointment.

We are very grateful for the patients who have agreed to take part in the Bronch UK study so far – almost everyone asked to take part has so far said yes, and it is very gratifying to have such a positive response.

Bronch UK is an important study – it shows that the research funding bodes recognize that bronchiectasis is an important disease that needs further research, and the results from the study itself will tell us a lot about bronchiectasis that we did not know and will stimulate more research into bronchiectasis. This should all lead to better ways of treating patients and thereby reduce the problems this disease causes.

 

Cyclotopia – because Cycling Matters

Cycling Fun   Raising Funds

Experience an action-packed family fundraising day out at the iconic Olympic Velodrome facilities at our Fun Day for all ages at the Lee Valley VeloPark on Sunday, 11th June 2017.

Cyclotopia Package includes:

  • Road Circuit – Cycle on the premium mile long track.  Who can go the fastest?  Who can go the longest?
  • Mountain Bike Trails – Challenge yourself on the exciting off-road trails.
  • Static Bike Racing 
  • Tour de France – Experience Tour de France training in the studio
  • Young Kids BMX – Right in the centre of the Velodrome, not to be missed
  • Kids free under 12 years

Velodrome Package includes:

  • A training session at the Velodrome, the fastest track in the world, with expert coaches.
  • Exciting timed laps.
  • Special guest!
  • Complete Cyclotopia Package.
  • Age 12+
Meet and cycle with Paralympic Champion, Mark Colbourne MBE !!!

This event has something for everyone – from complete novices to experienced cyclists.

To register, visit: http://bit.ly/2cKDKZq

 

 

[Cartoon kindly adapted by @RosAsquith from her book, ‘Max the Champion’ – https://www.amazon.co.uk/Max-Champion-Sean-Stockdale/dp/1847805191]

Cyclotopia – Last Few Days For Early Bird Tickets

Cycling Fun   Raising Funds

We are offering Early Bird tickets (at 2015 prices!) for our fabulous cycling fundraiser, Cyclotopia, at the Lee Valley VeloPark on Sunday. 11th June 2017.

Experience an action-packed family fundraising day out at the iconic Olympic Velodrome facilities at our Fun Day for all ages!

Cyclotopia Package includes:

  • Road Circuit – Cycle on the premium mile long track.  Who can go the fastest?  Who can go the longest?
  • Mountain Bike Trails – Challenge yourself on the exciting off-road trails.
  • Static Bike Racing 
  • Tour de France – Experience Tour de France training in the studio
  • Young Kids BMX – Right in the centre of the Velodrome, not to be missed
  • Kids free under 12 years

Velodrome Package includes:

  • A training session at the Velodrome, the fastest track in the world, with expert coaches.
  • Exciting timed laps.
  • Special guest!
  • Complete Cyclotopia Package.
  • Age 12+
Meet and cycle with Paralympic Champion, Mark Colbourne MBE !!!

This event has something for everyone – from complete novices to experienced cyclists.

To register, visit: http://bit.ly/2cKDKZq

Hurry though, before they sell out!

[Cartoon kindly adapted by @RosAsquith from her book, ‘Max the Champion’]

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Thank You For Your Fundraising During 2016

We are truly indebted to all our fabulous supporters; we exist because of you!  Here are some of the amazing fundraising events you organised and helped with last year:

Cyclotopia Charity Cycle Event, Lee Valley Velodrome 12.6.16

Christmas Concert, St Paul’s Church, Covent Garden 9.12.16

Breathing Matters Charity Stalls x 6

  • Tough Mudder
  • London Marathon
  • Bundles of bike rides, including the Croydon to Torquay Cycle
  • Coast to Coast Walk
  • Ironman Austria
  • Yorkshire 3 Peaks
  • Skydives
  • Brighton Marathon
  • Bristol Half Marathon
  • Prudential 100
  • Zumbathon
  • Great North Run
  • Cyprus Half Marathon
  • Swim Serpentine
  • London 10K
  • Marlow River Swim
  • Jersey Triathlon
  • Grim Reaper Ultra Marathon
  • Birthday party donations
  • Great Birmingham 10K
  • Panto … oh yes we did!

PLUS MANY MANY MORE!!!!