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pulmonary fibrosis

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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!!!!

 

 

 

 

Travel the Globe for Charity

Sometimes, a cycle at a nearby 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 http://www.globaladventurechallenges.com/international, but here’s just a few examples:

Grand Canyon Trek: 13.5.17-20.5.17, 16.9.17-23.9.17

Minimum sponsorship and fees: £3500 + £449 + airport TAX

Self-funding and fees: £1750 + £449 + airport TAX

Great Wall of China Trek: 7.10.17-15.10.17

Minimum sponsorship and fees: £2598 +  £349 + airport TAX

Self-funding and fees: £1299 + £349 + airport TAX

Zambia, Zambezi Raft Challenge:  9.9.17-16.9.17

Minimum sponsorship and fees: £3800 + £399 + airport TAX

Self-funding and fees: £1900 + £399 + airport TAX

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London to Paris Bike Ride: 7.6.17-11.6.17, 19.7.17-23.7.17 (Tour de France Special), 16.8.17-20.8.17, 13.9.17-17.9.17

Mininum Sponsorship + fees: £1560 + £125 + airport TAX

Self-funding and fees: £780 + £125 + airport TAX

Morocco, Sahara Desert Trek: 2.11.17-7.11.17

Minimum sponsorship + fees: £1830 + £199 + airport TAX

Self-funding + fees: £915 + £199 + airport TAX

Kilimanjaro to Ngorongoro Crater Cycle: 14.10.17-22.10.17

Minimum sponsorship + fees: £3850 + £399 + airport TAX

Self-funding + fees: £1925 + £399 + airport TAX

There are two ways of funding your challenge; minimum sponsorship (option A) or self-funding (option B).

Option A – Raising a Minimum Sponsorship

  • You pay the Registration Fee to Global Adventure Challenges and then raise the minimum sponsorship for Breathing Matters. You can set up a Justgiving Page from our home page (https://www.justgiving.com/breathingmatters)
  • You send 80% of the minimum sponsorship and pledges for the remaining 20% to Breathing Matters at least 11 weeks prior to the departure date of the Challenge.
  • Breathing Matters will be invoiced by Global for the balance of the Challenge 10 weeks prior to departure.
  • All outstanding sponsorship should be sent to us within six weeks of completing the Challenge. 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.

Option B – Self-Funding Option

  • You send the Registration Form to Global Adventure Challenges, together with the Registration Fee.
  • Eleven weeks prior to departure, an invoice will be sent to you for the cost of the 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). Once again, 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 on http://www.globaladventurechallenges.com/uk or Sport for Charity

Always Remember: Breathing Matters!

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New Year Offer for Cyclotopia!

group-shot-with-mark-cTo celebrate the New Year, 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 Velodrome in the amazing Lee Valley VeloPark within the Queen Elizabeth Olympic Park.

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 Competition – Prize for the fastest!
  • 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

Velodrome Package includes:

  • A training session at the Velodrome, the fastest track in the world, with expert coaches and exciting timed laps – with a special guest!
  • All above options from the Cyclotopia Package.

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

Kids (under 18) go FREE for the Cyclotopia Package!

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

Hurry though, before they sell out!

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Just Give It Up!

It’s another New Year, so it’s time for some self-improvement. Have you made New Year’s resolutions before, but failed to keep them? I would argue that a resolution is too restraining and negative, I would prefer to focus on adopting habits that keep you healthy. Let’s concentrate on the smokers amongst you. You know who you are?  Have you tried quitting before or have you persuaded yourself that your genes will protect you from the ravages of cigarettes?

First, think of why you should stop smoking and then, when you have decided to (and this might be the difficult step), take the first teeny weeny step. You do not have to throw all your cigarettes away for good – although that might be one approach. Take a small step, develop a new habit and, once it is taken, you are on the road to being an ‘ex-smoker’.  Keep taking little steps that help you develop little habits and you will achieve your aim.

Take Small Steps

What small steps can you take?  Try these:
1.  Develop a disgust for cigarettes. Spend 5 minutes each day imaging the toxic smoke filling your lungs and turning them black, and large globs of fat being deposited in the blood vessels of your brain, heart and legs. The surgeon teeing you up for an amputation operation, etc. Remind yourself of this every time you smoke.

2.  Toss a coin each day. Heads you smoke that day, tails you don’t.   Or, if that is too difficult, ‘tails’ you don’t smoke until midday or something similar. Keep this going for a year and you may reduce your intake by 50% (provided you don’t smoke twice as many on the smoking days).  On smoke-free days, have a shower, wash your hair, put on clean clothes and enjoy the fresh smell that you exude.

3.  Take fewer draws from each cigarette (you are going to have to be honest here).

4.  As an incentive, you could get yourself sponsored for giving up smoking and help a charity at the same time – a ‘Charity Quit’, if you will!

5.  Make the first step to getting expert help.  You can get excellent help from the following:

No matter how small your first step, it is a first step and it will be difficult – if it wasn’t, everyone would do it.  Keep in mind the pluses of being an EX-smoker.  Reward yourself for even a small achievement (not with a cigarette please).

Here are some of the reasons why you should quit (this is taken from http://smokefree.nhs.uk/why-quit/health-and-confidence/

Health Benefits

  • You will reduce your risk of developing illness, disability or death caused by cancer, heart or lung disease.
  • You will reduce your risk of gangrene or amputation caused by circulatory problems.
  • You will protect the health of those around you by not exposing them to second-hand smoke.
  • You will reduce the chances of your children suffering from asthma or glue ear.
  • You will improve your fertility levels and your chance of a healthy pregnancy and baby.
  • You will improve your breathing and general fitness.
  • You will enjoy the taste of food more.

Your lifestyle WILL improve (after the short term discomfort)

  • You will save money – as much as several hundred pounds a month, if you’re a heavy smoker.  Perhaps some of this ‘spare’ money could be given to charity!
  • You will no longer smell of stale tobacco.
  • The appearance of your skin and teeth will improve.
  • You will feel more confident in social situations – you won’t be worrying about the second-hand smoke you create anymore.
  • As a non-smoker, you may even find you get approached more often by potential new friends and partners when out socialising.
  • Your home will smell fresh and you will no longer be staining your walls with tar.
  • You will reduce the risk of fire in your home.

GOOD LUCK!

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Gaining Weight and Staying Strong with Lung Fibrosis

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

A Celebration at Christmas

Jeremy Cole conducted another fabulous evening’s concert last Friday at the beautiful St Paul’s Church, in the middle of Covent Garden. The Holst Singers were again on excellent form, mesmerising the ample audience who joined in with much loved Christmas Carols.

We were fortunate to be joined by the illustrious John Sergeant and Nigel Rees who read fabulously funny readings, chosen by themselves.

A massive thank you to Jane Walker who tirelessly organised the concert for Breathing Matters, and thanks to every volunteer that helped out as well as Sainsbury’s Warren Street who sponsored the event.

All profits raised from this concert go towards Professor Brown’s research into bronchiectasis at UCL Respiratory.

This Christmas Celebration started off the Christmas Season in the best way possible.

programmechoir-from-back-of-churchjane-jerry-jhn-nigel-donna-1outside-of-church

Autumn 2016 Newsletter

To view our Autumn Newsletter, please click here

Gold Quiz: Autumn 2016 Newsletter

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!!!

 

Support Our Christmas Appeal

xmas-appealWould you like the opportunity to make a difference this Christmas and take part in our Christmas Fundraising Appeal?

In the UK, approximately 1 in every 7 people are affected by some form of long term respiratory illness, and over 1 in 4 will die.  Almost 9,500 people die each year in London alone due to poor air quality.  Pulmonary fibrosis (PF) is a disease with a poorer prognosis than almost all cancers and for which there is no cure apart from transplantation. It is a disease where the respiratory system is irreversibly scarred, and breathing becomes harder and harder.  Mean life expectancy is 3 to 5 years post-diagnosis.

Christmas is an exciting time for most families, but it is impossible to enjoy when a family member is struggling for breath and can’t join in the fun.  This year, we have an exciting project that we would really love you to help us fund, and what better Christmas present could it be to simply help someone to breathe.

blood-clotThe money raised will fund our anticoagulation project for pulmonary fibrosis.  Patients with PF are known to suffer more from blood clots in the legs and in the lungs which can prove fatal.  We will investigate in a small group of patients whether simple treatment with blood thinners is safe in patients with pulmonary fibrosis and improves their lung function. This project has been fully approved by our local and regional ethical committee and takes use of our unique imaging programme using novel imaging in patients with PF to pick up an early response to therapy. This study has stimulated a lot of international interest and the results are eagerly awaited.

To remain independent of any drug companies, we plan to fund this project independently. We have already secured funding for the research team and our costs will be purely drug and imaging related.

For further information or if you wish to donate to our Christmas Appeal, here are ways you can help:

Ways of Donating:

  • Via our Justgiving Page: https://www.justgiving.com/breathingmatters
  • Or you can set up your own fundraising page from our lead Justgiving page.
  • Donate via text: Simply text “BMPF22 £XXX” to 70070
  • Email us on breathingmatters@ucl.ac.uk if you want to set up a bank transfer.
  • Ask your company to get involved and donate their ‘Secret Santa’ for this great cause.
  • Send a cheque made out to ‘Breathing Matters’ to us at the above address.
  • Spread the Word!

Thank you for helping someone breathe this Christmas!

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A Christmas Carol – Jane’s Story

jane-walkerJane Walker was forced to give up choir singing upon developing Bronchiectasis. How does she revive her passion? She shares it.

Bronchiectasis is an abnormal increase in the size of the bronchi, which are the tubes that take air into the lung. With the increase in size, bacteria often get caught in these tubes, which often result in chronically infected bronchi.

Jane Walker is the woman behind the Breathing Matters Christmas carol concert, and from 2006, Jane had to give up her passion of singing due to suffering from repeated chest infections. Upon referral to UCLH, in 2011 Jane was diagnosed with Bronchiectasis.

Before developing Bronchiectasis, Jane’s life had been centred around music; she was extraordinarily talented, and she loved to sing. “Singing has been part of my life from a very young age”, Jane says. “I started lessons when I was 13, then I went on to play the flute, I got my grade eight in both! I studied Music, and achieved my degree and post grad PGCE to teach.”

With all of this musical talent to offer, success soon followed Jane, and she later went on to sing with a professional choir, the Holst Singers. Jane explains that one of her most memorable moments was taking part in the premiere of John Tavener’s, The Veil of The Temple; an eight hour all-night performance in the Temple Church, and the longest piece of music composed in Western European classical music. “I also sang at the BBC Proms in the Royal Albert Hall, recorded CD’s with the Decca label and took part in various concerts that were broadcast live on Radio 3”, Jane says.

However, when Bronchiectasis struck, Jane suffered prolonged chest infections, which were exhausting and debilitating; and forced her to discontinue with her singing. “Some days I would wake up with phlegm producing cough that would go on for up to an hour”, Jane explains.

Jane battled with her Bronchiectasis, and in September 2013 she attended the Breathing Matters Breathtember Celebration in the Refectory at UCL. At the event Jane found presentations informative; she learnt more about research into lung diseases, and realised that such research is underfunded, and not given the publicity it deserves, often due to the misinformed perception that lung diseases are something related only to smoking.

“But I have never smoked and have a lung condition”, says Jane. “I thought a lot about the presentations and decided that I want to do something to fund research”, she adds.

Jane got in touch with the team at Breathing Matters, a charity set up to raise awareness and work with patients to help find a cure and develop better treatments for Interstitial Lung Diseases, and mentioned that she used to sing with a professional choir. Jane suggested that she could contact the choir, to see if they’d be interested in performing in a fundraising concert for Breathing Matters at Christmas.

“I missed singing with the Holst Singers and I knew this would be a great way to maintain my connection with them”, Jane says. “The team at Breathing Matters instantly became excited by the potential of the event, and even more so when the Holst Singers said yes!”

Jane explains how Breathing Matters is a fantastic charity that is very aptly named: “Breathing Matters an awful lot when you are singing or playing an instrument –I am now so happy that even though I cannot sing myself anymore, I can encourage others to share my passion – especially now that the concert is an annual occurrence!”

“I hope that the work we do to raise awareness and raise funds for research into Bronchiectasis will help to give this lung condition the recognition it deserves”, Jane concludes.

The Breathing Matters charity concert will this year again take place in the beautiful setting of St Paul’s church in the centre of Covent Garden on the 9th December at 7.30pm. The evening will begin with a presentation followed by a programme of Christmas music sung by the choir. To buy a ticket at £25, follow the link below:

http://www.bmchristmas.bpt.me