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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.

 

 

 

Spring 2018 Newsletter – Answers to the 2017 UK Firsts Quiz

 

Q: Who was announced as the 13th Doctor Who?

A: Jodie Whittaker

 

Q: What is the biggest selling single of 2017?

A: ‘Shape of You’, By Ed Sheeran

 

Q: Who won the BAFTA for Best Film in 2017?

A: La La Land

 

Q: What was the best selling book of 2017? [Data from the Guardian]

A: Non-fiction = ‘5 Ingredients, Quick and Easy Food’, by Jamie Oliver ‘- sold 716K

A: Fiction = ‘Bad Dad’, by David Walliams – sold 568K

 

Q: Who won Strictly Come Dancing?

A: Joe McFadden

 

Q: What were the top 3 boys and girls names of 2017? [Data from the Office of National Statistics]

Boys                            Girls

Noah                           Olivia

Harry                          Amelia

Oliver                          Emily

Spring 2018 Newsletter is Here

For the Spring 2018 Newsletter, please click here

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.

 

 

 

 

 

 

Bronchiectasis Newsround

 

Upcoming  News:

In April, a new research registrar, Dr Jocelyn Hall, will join the lung infection group for at least one year. She will be dividing her time between working with patients in the bronchiectasis clinic and on the ward, and starting some new research projects into bronchiectasis. In particular, she will be investigating how bronchiectasis affects the immune response to important causes of lung infection such as Streptococcus pneumoniae.  The Brown group has new methods of looking at how someone’s immune system recognises the bacteria and these will be used in patients with bronchiectasis to see whether there are any weaknesses in their ability to fight off lung bacteria that might mean they are more likely to get infections.

 

Research Paper:

In November, new UCL research into bronchiectasis findings were published in the European Respiratory Journal.  In this study by one of our previous research registrars Dr Arash Saleh and led by Dr John Hurst, we looked into risk factors for cardiovascular disease (heart attacks, angina and strokes) in patients with bronchiectasis. We previously published a paper using data from GP patient databases to show that people with bronchiectasis have roughly double the chance of having cardiovascular disease that would be expected. In the new paper, we have looked more closely at 101 people with bronchiectasis using a special ultrasound machine to measure the stiffness of the blood vessels in their arm.  What we found was that the arteries were stiffer than expected, especially in patients with reduced breathing capacity or frequent infective exacerbations. This is important as stiffer arteries are more likely to cause cardiovascular disease. Hence these results back up the previous epidemiology paper and further demonstrate that, as well as looking after the lungs, we need to think about reducing cardiovascular risk in patients with bronchiectasis.

 

 

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 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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