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Breathing Matters – Partner of the 2020 Respiratory Health Campaign

Breathing Matters is honoured to work with Health Awareness on the 2020 Respiratory Health campaign.

The campaign features exclusive content from key thought leaders and industry voices about respiratory conditions and external risk factors such as air pollution and COVID-19.

There are a wealth of great articles, including:

  • One person dies every hour of pulmonary fibrosis
  • Improve your quality of life with cleaner indoor air
  • Can your income make your asthma worse?
  • Breathlessness – when to seek help
  • Improving air quality around schools to protect children

A printed publication is enclosed within every copy of the Guardian newspaper and the content is available online at www.healthawareness.co.uk/respiratory.

Definitely worth a read!

 

 

 

 

Stark Facts about Pulmonary Fibrosis

  • Without treatment, 50% of Pulmonary Fibrosis [PF] patients will die within 3 years of diagnosis. Treatment extends life expectancy to 7-8 years.
  • Men are nearly twice as likely as women to suffer from PF.
  • There are 8000 new cases of PF every year in the UK.
  • 33,000 people are living with PF in the UK.
  • More than 30,000 people will be diagnosed with PF in the 27 EU countries each year.
  • PF is more common than all leukaemias combined.
  • 3-20% of people with PF have another family member with PF.
  • Most patients can be diagnosed from 1 to 12 years after their first symptoms.
  • Pulmonary fibrosis costs the NHS £88 million per year.
  • 5 million people worldwide have PF.
  • 1 in 3 PF patients are expected to die within the next 12 months.
  • There are 5,000 PF deaths per year.
  • 9,000 admissions and 86,000 hospital bed days accounted for by IPF patients per year.

HAVE A LOOK AT OUR PULMONARY FIBROSIS WISH LIST

PLEASE HELP US CHANGE THESE STATISTICS

DONATE NOW!!! 

 

New COVID-19 Clinical Trials Funded

Professor Joanna Porter was delighted to be awarded over £2M from LifeArc to run two clinical trials in COVID-19.

The first, ATTRACT, is in collaboration with Vicore Pharma, whom we have worked with for over 10 years on developing novel approaches for pulmonary fibrosis. The drug, VP01 (Compound 21; C21) is hoped to recalibrate the renin-angiotensin- system towards repair rather than inflammation.  This should indirectly help our research into pulmonary fibrosis too.

The second study, COVASE, is a collaboration with Veni Papayannopoulos and Veronique Brilaut at The Francis Crick Institute, to investigate an approved nebulised recombinant human deoxyribonuclease I (Dornase alfa) to reduce hyperinflammation from neutrophil extracellular traps in the lungs of hospitalised participants with COVID-19.

ATTRACT is open to recruitment and COVASE will open in the next two weeks.

Here’s the LifeArc press release with more info: https://www.lifearc.org/funding/covid-19-funding/

 

New Law Around Organ Donation

Every day across the UK, someone dies waiting for a transplant.  On 20th May 2020, the law changed around organ donation.  This new act is called ‘Max and Keira’s Law’

This law sees organ donation change to an opt-out system. This means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups.

The excluded groups are:

  • Those under 18 years of age
  • Those who do not have the capacity to understand the change
  • People who have lived in England for less than 12 months or who are not living in England voluntarily

Families will still be consulted and people’s faith, beliefs and culture will continue to be respected.

It is important that you have a conversation with your loved ones about your personal decisions surrounding this so they know your wishes.

Get the facts about organ donation to help you decide here

After you have talked with family, register your decision here

 

 

 

Thank you all 2600 times

Due to the COVID-19 pandemic, many major fundraising events were cancelled this year, including the biggest fundraiser of all, the London Marathon.  Charities were reporting a projected loss of 48% to their voluntary income, and a third wiped off from their total income.

On Sunday, 26th April 2020 – one month ago today and the scheduled day of the London Marathon – the nation joined together to help UK charities.  The challenge was to dream up an activity based around the numbers ‘2’ and ‘6’ and donate (at least) £26 to their favourite charity.

Loads of our lovely supporters joined the 2.6 Challenge in droves to support Breathing Matters and we wanted to say thank you to you all.  You have helped us raise a very apt £2600!

Here are a few of our favourite challenges:

  • Thanks to Liz Wiazek and family for their 26 sun salutations.
  • Thanks to Jessica, Emily and Seb plus dog Megan for running 2.6 miles around Stokesley Beck, raising £373 in memory of their grandad Andy Herring.
  • Thanks to Pavan Kohli for walking 2.6 hours on a hot Sunday and raising £178.
  • Thanks to Karen, Mike, Jose and Oli Fox for running 2.6k en famille.
  • Thanks to Steph Fisher and her amazing family for raising an incredible £943 for their 2.6 challenges.
  • Thanks to Elizabeth Coe who walked her pony 26 times around the field.
  • Thank you to John McCready who wrote a lovely 26 line poem.
  • Big respect to Elisa and Andreas who did a 26 second handstand for their challenge!
  • Thanks to Val and Jack for walking up and down their corridor 26 times.
  • Thanks to Maisie McCready for walking around her garden 26 times every day for a week.
  • Thanks to Terri Russell for walk-jogging for 2.6K and ‘a little bit more’.
  • Thanks to Tom for doing 26 keepie-uppies … not easy!
  • Well done Jo Porter on giving 26 beloved books to charity.
  • Thanks to Mary Foley for walking 2.6k in 26 minutes – that’s speedy!
  • Well done Jerry Brown on completing a 2.6k bike ride.
  • Thanks to James and Emily for their 26.2 mile [marathon] bike ride.
  • Thanks to Greg and Colin who cycled 260K over the week – that’s as far as London to Sheffield! Thanks guys.
  • Thanks to Donna and Nick who did 26 Just Dance dances in 2.6 hours.
  • Thanks to the Smith family and the Howard family for doing a variety of 2.6 challenges … together – but not together.
  • Thanks to Rebecca and Ted who did 26 exercises 26 times.
  • Thanks to Sean for drinking a bottle of beer in 2.6 seconds!

Thank you to all the above plus everyone else who donated £26 and beyond to mark our 2.6 Challenge.

Carrying on with COVID-19

It is fair to say the world has changed in 2020 since the COVID-19 Coronavirus outbreak in December 2019.

Many of our research team have volunteered to work on the NHS frontline at this very busy time but, despite this, Breathing Matters is still continuing its important research work in interstitial lung diseases, pulmonary fibrosis, bronchiectasis and lung infections.

COVID-19 disease is caused by the SARS-Cov-2 virus. SARS means severe acute respiratory syndrome. So, Breathing Matters is joining the national effort in trying to find out as much as possible about this new virus; the more we know, the quicker we will have better treatments, less deaths, decreased shielding and ultimately a vaccine.

Our new studies will include researching new therapeutic agents and understanding the long-term damage to lungs in patients who have recovered from COVID-19, and perhaps give us more insights into the origins of IPF and other fibrotic lung diseases.

The funding we continue to receive from our supporters is vital to our community and to our future. Thank you so much for continuing to support our important work. Donations can be given in different ways: https://www.breathingmatters.co.uk/ways-to-donate

I am sure you would like to join us in saluting our extraordinary team who are working tirelessly in helping the nation, both on the frontline and in the labs.

Our very best wishes goes to every one of you. Please keep safe and stay alert.

 

COVID-19 and Impact on Charities

There have already been several surveys looking at the impact of coronavirus on charities. Help save the UK Charities!

The Institute of Fundraising in partnership with the Charity Finance Group and National Council for Voluntary Organisations have conducted research on the impact of the crisis on over 500 charities surveyed with the following findings:

  • Charities are reporting a projected loss of 48% to their voluntary income, and a third wiped off from their total income.
  • 52% of charities have reduced existing or previous levels of service, with a further 12% intending to in the future.
  • 83% say that the most important thing for their organisation’s sustainability over the coming 3 to 6 months is access to emergency grant funding.
  • 84% of charities think their organisation could play a role in responding to the coronavirus outbreak, with the majority saying that government funding was needed to help them to do so.
  • 91% of charities surveyed have already or expect to have their cash flow disrupted, with 62% indicating that these would result in reduced charitable activity.

Small Charities Coalition (SCC) findings:

  • Eight of ten small charities (80%) have had to alter or drop services.
  • Only one in five (20%) small charities are able to provide normal services because of the pandemic.
  • One in ten small charities expect to make redundancies.
  • Less than four in ten (37%) had set up remote working.

Looking specifically at London-based charities, London Plus released research which highlights (lowlights!):

  • Four in five charities are impacted by the coronavirus.
  • 43% said they have had staff absences due to coronavirus.
  • 59% of respondents agreed coronavirus has had a notable impact upon the sector.

[Article from Institute of Fundraising, 20.4.20]

Breathing Matters Joins the 2.6 Challenge to Save UK Charities

Breathing Matters calls on supporters to join The 2.6 Challenge on Sunday 26 April 2020

Breathing Matters, like so many charities across the UK, has been hugely impacted by the cancellation of thousands of fundraising events due to COVID-19.

In response, the organisers of the biggest mass participation sports events across the country have come together to create a new campaign to raise vital funds to help our fundraising and save the UK’s charities.

The campaign, The 2.6 Challenge, will launch on Sunday 26 April 2020 – what should have been the date of the 40th London Marathon, the world’s biggest one day annual fundraising event, which raised £66.4 million for charities in 2019.  The challenge will last for a week. The 2.6 Challenge is open to anyone of any age – the only requirement is that the activity must follow the Government guidelines on exercise and social distancing and remember to stay local.

From Sunday 26 April 2020, we are asking you to dream up an activity based around the numbers 2.6 or 26 and fundraise by donating on the Breathing Matters’ 2.6 Challenge donation page or by creating your own 2.6 Challenge fundraising page from the Breathing Matters Justgiving home page.

The 2.6 Challenge can be anything that works for you,” says Nick Rusling, Co-Chair of the Mass Participation Sports Organisers group (MSO) and CEO of Human Race. “You can run or walk 2.6 miles, 2.6km or for 26 minutes. You could do the same in your home or garden, go up and down the stairs 26 times, juggle for 2.6 minutes, do a 26 minute exercise class or get 26 people on a video call and do a 26 minute workout – anything you like. We want people to get active, have fun and raise money to help Save the UK’s Charities by giving money or raising funds for the charity close to your heart.”

“For many of the UK’s charities, the day of the London Marathon is the biggest fundraising day of the year,” said Hugh Brasher, Co-Chair of MSO and Event Director of London Marathon Events. “One of the founding pillars of the London Marathon was ‘to show how the family of mankind can be united’. We hope that The 2.6 Challenge, which starts on the day our 40th Race should have taken place, will embody that spirit and inspire people, families and communities to fundraise for their chosen charity to help Save the UK’s Charities. Right now, our vulnerable members of society need the help of charities more than ever before..”

Donna Basire, Fundraising Manager from Breathing Matters said “This event could really be a lifesaver to so many as money raised for Breathing Matters funds research into respiratory conditions such as pulmonary fibrosis, COVID-19, bronchiectasis and pneumonia.  You can do this at your own pace and in your own house or garden – so the challenge is open to everyone. All we ask is that you donate £26 to the Breathing Matters 2.6 Challenge page, or set up your own page and have your own target to raise – could you raise £260?”.

The mass-participation events organisers behind The 2.6 Challenge are: Human Race, parkrun, The Great Run Company, Run 4 Wales, Grounded Events, London Landmarks, Virgin Sport, Limelight Sports, Threshold Sports, Running High and London Marathon Events. The design and website has been created by Studio Republic and the social media campaign by LiveWire Sport. Both agencies are working pro bono.  The campaign is supported by the Charities Aid Foundation, the Institute of Fundraising, the Small Charities Coalition, the Office for Civil Society, Sport England, Let’s Do This, Virgin Money Giving and JustGiving.

For more information on The 2.6 Challenge, visit twopointsixchallenge.co.uk

Virtual Fundraising Challenges

For you lovely people out there who are itching to fundraise, but have not been able to during the COVID-19 pandemic – this is especially for you!

Our event partners, Run for Charity, have just launched a virtual challenge series for young and old, for the fit and not that fit.  It’s a great way of making the most of your time in isolation, having a purpose and keeping/getting fit.  It  is a unique chance for those non-marathon runners to get involved and run/walk a marathon or climb a mountain at your own pace.  And you can win a medal at the end (we all love a good medal!).

Here is a list of our current virtual challenges:

Climb Everest – A 12 week challenge perfect for isolation. Challengers will have to complete a climb equivalent to Mount Everest (8,848m) either out and about on your daily exercise, climbing the stairs indoors, or a combination of the two!

Inca Trail – A virtual challenge to tick off the bucket list. A 25 mile run, walk or jog to be completed in as many efforts as you can manage.

Team Gotham – Not all Superheros wear capes….some have to fight crime in isolation too! This is a 5K challenge, so perfect for families who want to complete it together, or anyone looking to stay fit during lockdown.

The Big Charity Run – The ultimate challenge; you can choose your own.  Pick a 30, 60, 90 or 120 mile distance to complete over a single month. You can run, walk or cycle, so perfect for setting an ambitious target and staying motivated!

Plus there are lots of location specific races that you could join, including:

  • Richmond Park – Half Marathon
  • Tatton Park – 10K
  • Victoria Park – 5K, 10K & Half Marathon
  • Brixton – 5K & 10K
  • Wimbledon Common – Half Marathon

All you need to do is choose your challenge, register and start.

  1. Choose and register here. Receive confirmation email to log in to our Secure Charity Portal.  Payment covers the cost of the place and medal only.
  2. Breathing Matters will get notification that you have signed up for your challenge and will contact you  Or you can contact us directly at breathingmatters@ucl.ac.uk
  3. Set up a Breathing Matters personal fundraising page.  It is up to you how much you want to raise for Breathing Matters; there is no minimum sponsorship limit.
  4. All you need to do is gather evidence along the way of your challenge (eg. photo of your fitness tracker, Strava) and, once completed, simply email it to virtual@runforcharity.com

Your medal will be sent out by our partner in the post.

Run for Charity have partnered with one of the top virtual events companies in the UK, ‘My Race’, who have been producing and fulfilling Virtual Events for many years, so you are in safe hands.

All funds raised will go towards much needed research into pulmonary fibrosis,  COVID-19, bronchiectasis and lung infection.

So you can keep safe, stay alert, social distance, and do something worthwhile at the same time!

What are you waiting for? …

 

Call for Help from Ex-Inpatients with COVID-19

URGENT call to patients that have been admitted to hospital with diagnosed COVID-19.
We need your immediate help in writing a protocol for a COVID-19 clinical trial.
Please email us on breathingmatters@ucl.ac.uk and we will email you back with questions.
Thank you in advance.