Breathing is an instinctive, vital and unconscious process and so it can be hard to believe that you could be doing it better, especially if you have a lung disease and suffer with breathlessness. But it is possible that, even with Interstitial Lung Disease / Idiopathic Pulmonary Fibrosis (ILD/IPF), you could be breathing better.

ILD/IPF causes scarring in the lungs and reduces the efficacy of breathing; the lungs become stiffer and less elastic, reducing their ability to expand. This eventually affects the transfer of gases in the airways, as the scarring hardens and thickens the airways, breathing becomes more difficult and breathlessness start to occur during activities of daily living. Cough is the other symptom often mentioned by patients. Yes, all of this is due to the disease process, but something can still be done to help you manage your symptoms better.

Eastern medicine has always focussed on breathing control, promoting it as an adjunct to treat poor health. Qi-gong, Tai-Chi and yoga all focus the mind on utilizing your breathing muscles (especially your diaphragm) to achieve a flow of movement and deep relaxation to restore the body’s balance. Western medicine is starting to take this holistic approach on board and one such complementary therapy is Buteyko. The Buteyko Breathing Technique (BBT) is an approach which considers your physical and mental condition within the context of your lifestyle, environment and diet. The focus is on anxiety, relaxed breathing, diet, stretches, stopping cough and breathlessness all of which have a role to play in ILD/IPF.

The current evidence base is in asthma, showing quite strongly that it helps manage symptoms alongside pharmacological therapy and significantly improves quality of life for patients (British Thoracic Society /Scottish Intercollegiate Guidelines Network 2016, Global Initiative for Asthma 2016). It is not seen as a magic pill and it is not necessarily about being symptom free or drug free, but it’s a way of self-managing and feeling more in control of breathlessness and cough.

The BBT method comes from Konstantin Buteyko, who developed the theories as an intern in Moscow in the 40’s and 50’s. It showed dramatic results and the programme was rolled out amongst asthmatic children across Russia who were admitted to hospital. The technique spread to New Zealand, Australia and eventually came to the UK in the late 1990’s at The Hale Clinic in London. It was initially seen as a pseudoscience, with the reasons that Buteyko put forward for why the technique worked being disproven; however, current evidence has shown quite strongly that it works, and therefore it has been included in UK guidelines as mentioned above.

Figure 1 describes how the more anxious you become about being breathless, the more breathless you will become due to physiological responses occurring. BBT teaches you to control this as you keep your breathing even by switching on your parasympathetic nervous system and therefore turning off your fight or flight response.

Physiotherapy will assess how you are breathing during rest and during activity and review what things are like for you on a daily basis. Depending on your goal, a management plan will be written with you. The number of sessions required depends on your need, but it is usually around six, with treatment focussing on nose breathing, diaphragmatic control and control over cough. You will be required to do some work at home and it takes some commitment as you are trying to instil a new habit, but you should notice the difference within 1-2 weeks if you stick with it.

BBT has been shown to be effective in other lung diseases with no adverse effects documented. BBT will help you to manage your condition better and you will be supported by a physiotherapist during this period. If this is something that you think you may be interested in, speak to your respiratory consultant at your next follow up appointment.

Written by: Helene Bellas, Specialist Respiratory Physiotherapist, University College London Hospital

The post Every Breath You Take appeared first on Breathing Matters - UCL Respiratory.

The post A Present for #Breathtember appeared first on Breathing Matters - UCL Respiratory.

The ‘flu, or influenza virus can cause infections all year round, but in the UK, it is most common in the winter. There are many strains, some of which are worse than others, such as swine ‘flu (H1N1 strain) which tends to have a more rapid onset, high fevers and stomach upset and has caused fatalities, often in previously fit adults.  ‘Flu affects 10% of the population each year, but rises to 25-30% during an epidemic. In contrast, adults have approx 2 to 3 colds per year and children 5 to 6.

Do I Have ‘Flu or a Cold?

Vaccination Against the ‘Flu

Anyone can get the ‘flu and, the more a person is in close contact with people who have the virus, the more likely they are to get it.  Certain at risk groups are advised to have a ‘flu vaccination. They include:

• Everyone over the age of 65.
• People of any age with lung diseases, heart disease, kidney disease, liver disease, diabetes or lowered immunity.
• Anyone living in a residential or nursing home.
• Carers of those at risk.

The UK is fortunate to have a safe and effective vaccination against the ‘flu, which is provided free of charge by the NHS. Those most at risk are advised to have a vaccination every year. This is because the ‘flu virus changes slightly every year.  Despite popular belief, the ‘flu vaccination can not give you ‘flu. It’s true that some people experience symptoms of a heavy cold at the same time or just after they’ve had the ‘flu jab – this is simply a coincidence and the symptoms are caused by one of the many common cold viruses in the autumn and winter.  It is still possible to suffer heavy colds after a vaccination, as the ‘flu jab only protects people from the ‘flu virus, not other viruses.

The ‘flu vaccination is available from October each year.  Anyone who thinks they need it should talk to their doctor or nurse.

How to Treat the ‘Flu

Antibiotics are of no use in treating ‘flu. Anti-viral medication is available from the GP for at risk groups, but it needs to be taken early on in the disease to stop the virus multiplying, and may only reduce the symptoms rather than treating the infection.

The best ways to treat the symptoms of flu are:

• Get plenty of rest. The body uses a lot of energy fighting infections, so resting for the first couple of days gets it off to a good start.
• Keep warm.
• Make sure you drink plenty of water to avoid dehydration, and try hot water with lemon, ginger and honey to relieve symptoms such as sore throat.
• Take paracetamol or anti-inflammatory medicines such as ibuprofen to lower a high temperature and relieve aches.

Always contact your doctor if you’re not getting better after a few days, if you’re unduly short of breath or if you’re coughing up blood or large amounts of yellow or green phlegm.

How to Keep Healthy and Avoid Getting the ‘Flu

• Keep your immune system strong by eating a healthy diet.
• Take regular exercise.
• Get enough rest and relaxation.
• Do not smoke.
• Take regular vitamins and bump up your vitamin C.
• Wash your hands often and keep a bottle of antibacterial handclean around.
• Avoid people who are coughing and sneezing, especially if they’re not covering their mouth and nose.
• Use and bin your tissues.

The post Don’t Let Flu Catch You This Year appeared first on Breathing Matters - UCL Respiratory.

For those of you interested in supporting us by buying charity Christmas cards, you can order directly online with CharityChristmasCards.com

CharityChristmasCards.com sell both paper cards and, for those of you who are more green in nature, they also provide online cards to email to your friends and family. They also supply corporate cards so you can put your company name on the front cover.  Up to 50p per card is donated directly to Breathing Matters.

For those of you around the London area, why not come along to our Charity Christmas stall on Friday 25.11.16 11am-2pm at UCH Atrium where we will be selling stocking fillers, jewellery and designer handmade Christmas cards.

If you are interested in purchasing our handmade Christmas cards, which Jane Walker has designed, contact us directly on breathingmatters@ucl.ac.uk

Would you like to find out what type of Christmas charity supporter you are?  Read our article at http://bit.ly/19gNAoH

The post Christmas is A-Coming appeared first on Breathing Matters - UCL Respiratory.

1964 James Bond movie – Goldfinger

Pyrite – Fools Gold

1849 California event – Gold Rush

What King Midas had – Golden Touch

Kanye West song – Gold Digger

Former name of Ghana – Gold Coast

Oil – Black Gold

Francis Drake’s ship – Golden Hind

San Fran bridge – Golden Gate

What our supporters have – a Heart of Gold!!!

The post Gold Quiz: Autumn 2016 Newsletter appeared first on Breathing Matters - UCL Respiratory.

It is very important to eat well to maintain your strength and, in many cases, patients with fibrosis need to put on weight to help with this.  Dr Hazel Wallace has written this helpful article to give you tips on staying strong.

Prioritise Protein

Protein is vital for building and repairing muscle tissue.  When your body doesn’t get enough protein, it might break down muscle for the fuel it needs. This can make it take longer to recover from illness and make you more likely to pick up infections. Protein is also very important for a healthy immune system. Certain proteins, known as antibodies, help keep us healthy by defending against disease-causing bacteria and viruses. People with a chronic condition, such as lung fibrosis, often require more protein to keep their strength up to fight infection.  The best sources of protein include poultry, lean cuts of beef, fish, eggs, dairy, beans and lentils.

Drink your Calories

Smoothies are a great way to fit in extra calories, but also extra vitamins and minerals, protein and healthy fats! There are no rules when it comes to a smoothie, and really anything goes – so don’t be afraid to experiment. Start by choosing a good base, such as dairy milk or almond milk. Then add a good source of protein such as yogurt, cottage cheese, or protein powder. Next, add some healthy fats, such as half an avocado, a handful of nuts or seeds or a tablespoon of peanut butter. To finish off your smoothie, add some fresh or frozen fruit for flavour and extra nutrients. Blend it all up and add ice!

Eat Little and Often

The prospect of having to gain weight and eat a lot of extra calories can be quite daunting for some people. Fitting all those extra calories in three meals can be difficult and leave you feeling uncomfortable. Eating little and often spreads the calories out so you can get in enough calories without feeling discomfort. Aim for three meals a day with two or three snacks in between. Choose foods which are nutrient dense, but also high in calories per serving, such as avocado, nuts, peanut butter, granola and dates. Try to avoid snacking on junk food, such as sweets, cakes, crisps and chocolate bars. Although these foods are high in calories, they are low in nutrients!

Sneak in Extra Calories

If you are still having trouble meeting your calorie targets or gaining weight, try sneaking in some extra calories into your meals. Accessorise your meals with calorie boosters, such as coconut oil and extra virgin olive oil, nuts and nut butters, hummus and guacamole. Nut butters have about 90 calories per tablespoon and contain healthy monounsaturated fats, which not only provide you with lots of energy, but a diet high in monounsaturated fats which can overall reduce your risk of heart disease, atherosclerosis (plaque in the arteries), high blood pressure and stroke. Try some peanut butter as a topping for apple, banana or oatcakes as a quick healthy snack in between meals.

Probiotics

Our gut is home to trillions of bacteria, and although many of us consider bacteria as something which is only bad, unhealthy, and disease-causing, some bacteria are actually beneficial, and essential to good health! Friendly bacteria in our gut, such as lactobacillus and bifidobacteria, are essential for a strong immune system and overall health. However, illness, stress and certain medications can disrupt the gut flora. This disruption can cause bloating, nausea and diarrhoea. We can help to restore the balance in our gut by taking a probiotic supplement or eating probiotic rich foods, such as natural yoghurt, sauerkraut and kefir.

Exercise

Most of us associate exercise with weight loss, but it is also really important for people who are looking to gain or maintain their weight.  Strength training, also called resistance training, is really important when trying to build muscle or gain strength. This is a form of exercise which involves using your muscles to contract against a weight or force. The resistance used can be anything from dumb bell weights or simply your own bodyweight.

If you are not keen to try out weight training, there are many other ways to build up your strength and fitness. Activities such as brisk walking, hiking, swimming and yoga are just a few ways we can stay active. It is important to note that exercise not only benefits you physically, but also mentally by boosting mood and reducing anxiety!

Good luck!

Article written by Dr Hazel Wallace

The post Gaining Weight and Staying Strong with Lung Fibrosis appeared first on Breathing Matters - UCL Respiratory.

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The post New Year Offer for Cyclotopia! appeared first on Breathing Matters - UCL Respiratory.

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!!!!

The post Thank You For Your Fundraising During 2016 appeared first on Breathing Matters - UCL Respiratory.

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]

The post Cyclotopia – because Cycling Matters appeared first on Breathing Matters - UCL Respiratory.

Breathing is an instinctive, vital and unconscious process and so it can be hard to believe that you could be doing it better, especially if you have a lung disease and suffer with breathlessness. But it is possible that, even with Interstitial Lung Disease / Idiopathic Pulmonary Fibrosis (ILD/IPF), you could be breathing better.

ILD/IPF causes scarring in the lungs and reduces the efficacy of breathing; the lungs become stiffer and less elastic, reducing their ability to expand. This eventually affects the transfer of gases in the airways, as the scarring hardens and thickens the airways, breathing becomes more difficult and breathlessness start to occur during activities of daily living. Cough is the other symptom often mentioned by patients. Yes, all of this is due to the disease process, but something can still be done to help you manage your symptoms better.

Eastern medicine has always focussed on breathing control, promoting it as an adjunct to treat poor health. Qi-gong, Tai-Chi and yoga all focus the mind on utilizing your breathing muscles (especially your diaphragm) to achieve a flow of movement and deep relaxation to restore the body’s balance. Western medicine is starting to take this holistic approach on board and one such complementary therapy is Buteyko. The Buteyko Breathing Technique (BBT) is an approach which considers your physical and mental condition within the context of your lifestyle, environment and diet. The focus is on anxiety, relaxed breathing, diet, stretches, stopping cough and breathlessness all of which have a role to play in ILD/IPF.

The current evidence base is in asthma, showing quite strongly that it helps manage symptoms alongside pharmacological therapy and significantly improves quality of life for patients (British Thoracic Society /Scottish Intercollegiate Guidelines Network 2016, Global Initiative for Asthma 2016). It is not seen as a magic pill and it is not necessarily about being symptom free or drug free, but it’s a way of self-managing and feeling more in control of breathlessness and cough.

The BBT method comes from Konstantin Buteyko, who developed the theories as an intern in Moscow in the 40’s and 50’s. It showed dramatic results and the programme was rolled out amongst asthmatic children across Russia who were admitted to hospital. The technique spread to New Zealand, Australia and eventually came to the UK in the late 1990’s at The Hale Clinic in London. It was initially seen as a pseudoscience, with the reasons that Buteyko put forward for why the technique worked being disproven; however, current evidence has shown quite strongly that it works, and therefore it has been included in UK guidelines as mentioned above.

Figure 1 describes how the more anxious you become about being breathless, the more breathless you will become due to physiological responses occurring. BBT teaches you to control this as you keep your breathing even by switching on your parasympathetic nervous system and therefore turning off your fight or flight response.

Physiotherapy will assess how you are breathing during rest and during activity and review what things are like for you on a daily basis. Depending on your goal, a management plan will be written with you. The number of sessions required depends on your need, but it is usually around six, with treatment focussing on nose breathing, diaphragmatic control and control over cough. You will be required to do some work at home and it takes some commitment as you are trying to instil a new habit, but you should notice the difference within 1-2 weeks if you stick with it.

BBT has been shown to be effective in other lung diseases with no adverse effects documented. BBT will help you to manage your condition better and you will be supported by a physiotherapist during this period. If this is something that you think you may be interested in, speak to your respiratory consultant at your next follow up appointment.

Written by: Helene Bellas, Specialist Respiratory Physiotherapist, University College London Hospital

The post Every Breath You Take appeared first on Breathing Matters - UCL Respiratory.

Colin Bathe ran this year’s London Marathon in support of Breathing Matters to raise funds and awareness of pulmonary fibrosis. This is his personal account of the day.

Breathing Matters are so thankful to Colin for supporting us.  If you would like to support Colin and make his day all the more worthwhile, please visit:

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The post London Marathon 2017: a Runner’s Personal Race Report appeared first on Breathing Matters - UCL Respiratory.

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

Tweet Tweet!

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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The post Get out of Breath for #Breathtember this September appeared first on Breathing Matters - UCL Respiratory.

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!

The post You Got out of Breath for #Breathtember! appeared first on Breathing Matters - UCL Respiratory.

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, 8^th 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!

The post Show and Tell Meetings appeared first on Breathing Matters - UCL Respiratory.

For our Autumn 2017 Newsletter, please click here

The post Autumn 2017 Newsletter is OUT NOW appeared first on Breathing Matters - UCL Respiratory.

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!

The post Challenge Yourself in 2018 appeared first on Breathing Matters - UCL Respiratory.

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, 20^th 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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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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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”.

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Are you a keen cyclist and want a serious challenge?  How about doing the Prudential Ride London 100 on Sunday, 29^th 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, 22^nd May 2018, so don’t delay.

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