Welcome to Alpha-1 Awareness, a UK Charity that Supports people with AATD

AATD or Alpha-1 Antitrypsin Deficiency is a lack of the protein alpha-1 antitrypsin (AAT) which is produced in the liver. The main job of AAT is to protect the lungs. A deficiency can lead to life-threatening lung and/or liver disease.

The first signs and symptoms of lung disease caused by alpha-1 antitrypsin deficiency usually appear between ages 20 and 50.
The symptoms are:

  • shortness of breath following mild activity
  • reduced ability to exercise
  • wheezing

About ten percent of infants with the deficiency show signs of liver damage at birth. Fifteen percent of adult Alphas also develop liver disease.

Only a small fraction of alpha-1 antitrypsin deficient patients in the United Kingdom are aware of the causes of their condition.

Our charity is run by non-paid volunteers who all are either affected by Alpha-1 or have a family member who is. We all have a connection to Alpha-1 and this isn’t our day job. We have a real passion for the charity and for supporting people who are affected, their families and friends.

This website was created so that people can learn more about Alpha-1 and how to get support.  We produce our own booklets which people can download and view digitally (click here) and even request that a set be sent to them in the post for free. We have a private Facebook Group where we help to support people in a safe environment. If you would prefer one on one support, then you can email us directly on ‘support@alpha1.uk‘ or use our Contacts Us Form. We care, we want to help those affected, their families and their friends. We are also proud to be the only UK charity that is donating money to go directly to the research of a cure.

 

 


 

Fundraising

We would like to thank all those that raise funds for us, without you, we would not have a charity & we would not be able to support those affected with Alpha-1 and their families.
Below are 2 events that are happening in 2019, if you are interested in doing a run in London or a hike in Derbyshire, click on their links to learn more.

British 10K Run

Date: Sunday 21st July 2019
Location: London

The British 10K is well known as the world’s greatest road race route. Passing through the heart of London you’ll see many of the capital’s most iconic landmarks.  You’ll also run past the True Geographical Centre of London, down closed Regent Street, the Strand and Embankment, and get the best view across the river of the London Eye.

If you are interested in running in this race for free, click here to learn more.

TrekFest ~ The Peaks

Date: Saturday 31st August 2019
Location: Hope Valley, Derbyshire (S33 8RZ)

TrekFest is the UK’s ultimate trekking challenge. Take on an epic trek through open countryside in the Peak District National Park, Derbyshire walking side by side with hundreds of like-minded individuals all with the same goal in mind – to cross the finish line.

If you would like to take this trek on along with us, click here to learn more.

Fundraisers

Please take a moment to read what our fundraisers are doing and if you are able, to donate something to them.

Pauline Laybourne

“On 17 August 2019, my husband Colin Laybourne and our friend Rae Davies will be walking along the Llanberis Path to the summit of Snowdon, North Wales to raise much needed money and awareness of Alpha 1 Antitrypsin Deficiency (AATD). “

 

To learn more, click here.

 

 


 Latest News

 

Shark-inspired drug may help treat fibrosis, researchers say

Australian scientists hope a drug that mimics part of a shark’s immune system may help treat an incurable lung disease.     Idiopathic pulmonary fibrosis (IPF) scars lung tissue, causing breathing to become progressively harder. It ki
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John Mugford sadly passes away

John Mugford, chair of the Alpha-1 UK Support Group, passed away peacefully at home on Jan. 30. He was 65. (From left to right: Sheila Mugford, John Mugford, Darryl Mugford, Paul Mugford and Ryan Mugford) Mugford was diagnosed with Alpha-1 in 1999 af
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November is Alpha-1 Awareness Month

Alpha-1 awareness is a year-round endeavour, but during the month of November we ask EVERYONE to become engaged and increase #Alpha1Awareness. To help you get started, we have created some free materials that you can download and print, share on soci
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INFORMATION DAY

INFORMATION DAY Holiday Inn Bristol Filton, Filton Road, Hambrook, Bristol BS16 1QX SATURDAY OCTOBER 29th 2016 10.30am-3.45pm I am pleased to say we are once again holding an Information Day this year and would very like to invite you to join us, as
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Some helpfull information from the British Lung Foundation

Welfare benefits Are you living on a lower income because of a lung condition? You might be entitled to extra support. Read our welfare benefits information > Take part in IPF Week IPF Week starts on 17 September. IPF is a condition that makes the
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Asthma drug ‘gamechanger’ could revolutionise treatment

  A new asthma drug that could revolutionise the treatment of the 500,000 Britons with moderate or severe versions of the condition and reduce the number of deaths from has been hailed as a “gamechanger”. Asthma treatment has barely changed over
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British 10k Run

Have you been inspired by Michelle Kendall, running the London Marathon, on behalf of our Charity, do you or a family member or friend want to do a run to raise funds for Alpha 1 Awareness UK ? Now is your chance, we have places available for the BRI
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Travel Insurance

Dear Alpha – 1 Awareness UK,   We are delighted to report that we continually have encouraging response from many patients and their families who have been referred to us for travel insurance advice via various organisations such as Macmillan, B
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This website is run by Alphas and their carers. We do our very best to ensure that all information shown here is up-to-date and accurate. However, you should always consult your own GP or other medical professional if you have the slightest concerns about your health.