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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.]

 

 

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 would ask that supporters tweet different challenges each day in September including the term ‘#Breathtember and to 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 wonderous London bridges
  • Blow bubbles!
  • Skydiving
  • Or just simply walking up the stairs!

The important thing is that you tweet your challenge every day including the term ‘#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’.  To make the biggest impact, the aim is to get the term ‘#Breathtember’ to trend.

Follow us on Twitter for further details: @Breathingmatter 

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Ride London 100 Places Now Available

Are you a keen cyclist and want a serious challenge?  How about doing the Prudential Ride London 100 on Sunday, 29th July 2018.

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

The deadline for sign ups is Tuesday, 22nd May 2018, so don’t delay.

 

 

 

 

 

 

Our Most Important Lung Fibrosis Paper to Date

We are delighted to announce the publication of our collaboration with the Insititute of Nuclear Medicine and our most important lung fibrosis paper to date. This work investigates the use of molecular imaging to more accurately determine disease severity in patients with pulmonary fibrosis.

Win T, Screaton NJ, Porter JC, Ganeshan B, Maher TM, Fraioli F, Endozo R, Shortman RI, Hurrell L, Holman BF, Thielemans K, Rashidnasab A, Hutton BF, Lukey PT, Flynn A, Ell PJ, Groves AM. Pulmonary 18F-FDG uptake helps refine current risk stratification in idiopathic pulmonary fibrosis (IPF). Eur J Nucl Med Mol Imaging. 2018 Jan 16. [Epub ahead of print].

For the last 5 years, Breathing Matters has collaborated on a programme investigating the ability of PET scanning to more accurately predict prognosis in individual patients with IPF and other forms of lung fibrosis.

[Combined high resolution CT image (Left) and PET image (Right) in a patient with IPF. The CT images (A) show honey comb lung (arrow) and PET images show high signal in the honey comb area (black, at site of broken arrow). Groves et al J. Nucl Med. 2009;50:538-45.]

The newly published paper in the European Journal of Nuclear Medicine, consisted of a unique 10-year prospective study of 113 IPF patients (the largest PET study in IPF) and the first of its kind to evaluate the use of FDG (glucose metabolism) PET scanning to predict prognosis and disease progression against the current standard, Gender Age Physiology (GAP) scoring system.

The findings demonstrate that FDG (glucose metabolism) PET scanning can help identify patients with IPF who are at increased risk of death and might therefore benefit from early treatment.

The figure below shows, for the first time,  that patients with IPF who have a higher lung glucose metabolism are significantly ( p<0.003) more likely to deteriorate rapidly, despite having features that would conventionally place them in a good prognostic group. This data suggests that current treatment guidelines may need to be reviewed, as currently patients placed in a conventionally favourable group are not recommended for treatment.  This novel imaging biomarker may allow us to evaluate new treatments more quickly by looking for changes in PET signal in individual patients.  This will mean that smaller cohorts of patients will be needed for clinical efficacy trials, with a reduction in time to bring new medicines to patients.

Dr Porter reports, “This is a potential game changer in the stratification  of patients with pulmonary fibrosis, giving additional information that complements the current GAP score and allows us to more accurately predict outcomes for individual patients.  This means that we can reassure patients with a low glucose uptake on the scan; but intensify follow-up, treatment and early transplant referral in those patients with high glucose uptake. This is better for patients and allows us to provide a more effective and efficient ILD service”.

 

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

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:  15.11-2.12.18, 7-24.3.19, 14.11-1.12.19

Minimum sponsorship:

£449 + £3,750 + airport TAX

Self-funding:

£449+ £1,875 + airport TAX

 

Tanzania, Kilimanjaro, Machame Trail Trek:  20-30.6.19

Minimum sponsorship:

£475 + £4,150 + airport TAX

Self-funding:

£475 + £2,075 + airport TAX

 

China, Great Wall Trek:  11-19.5.19

Minimum sponsorship:

£299 + £2,700 + airport TAX

Self-funding:

£299 + £1,350 + airport TAX

 

USA, Rock the Canyons: 11-18.5.19, 14-21.9.19

Minimum sponsorship:

£449 + £3,750 + airport TAX

Self-funding:

£449 + £1,875 + airport TAX

 

Morocco, Sahara Desert Trek: 14-19.3.19, 31.10-5.11.19

Minimum sponsorship:

£175 + £1,800 + airport TAX

Self-funding:

£175 + £900 + airport TAX

 

USA Yosemite to San Fran Cycle:  21-29.9.19

Minimum sponsorship:

£475 + £4,600 + airport TAX

Self-funding:

£475 + £2,300 + airport TAX

 

India Cycle: 15-24.11.19

Minimum sponsorship:

£349 + £3,000 + airport TAX

Self-funding:

£349 + £1,500 + airport TAX

 

Madagascar Cycle:  27.9-6.10.19

Minimum sponsorship:

£399 + £3,800 + airport TAX

Self-funding:

£399 + £1,900 + airport TAX

 

Lapland: Husky Trail Dog Sled:  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!

 

 

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!

 

You Got out of Breath for #Breathtember!

Thank you to all of our supporters who Got Out Of Breath for #Breathtember last month to help raise awareness of pulmonary fibrosis during September’s world PF awareness month.

From hiking, cycling, climbing to giving up fizzy drinks.  You all did your best to spread the word about pulmonary fibrosis.

Our #Breathtember twitter champion this year was ….. Steve Wright who walked a fantastic 50 miles during the month.

And why did we do this … here’s why:

  • Men are nearly twice as likely as women to suffer from IPF.
  • There are 5000 new cases of IPF every year in the UK.
  • 50% of IPF sufferers die within 3 years of diagnosis.
  • More than 30,000 people will be diagnosed with IPF in the 27 EU countries each year. 
  • IPF is more common than all leukaemias conbined. 
  • Most patients are diagnosed 1-12 years after their first symptoms. 
  • 5 million people worldwide have IPF. 

We need more funding to change these statistics.

Thank you for your help during #Breathtember … let’s make a difference together!