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

 

Alpha-1 Awareness Visit the people at UCL who are looking for a cure for Alpha-1

On the 26th July 2018, Alan Wooler went to see some of the team at UCL who are doing the vital research into finding a cure for Alpha-1. Alistair Jagger who is a PhD student in Prof Lomas’ team was kind enough to show Alan around the labs and answer
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New meeting to discuss molecular therapies for liver disease in alpha-1 antitrypsin deficiency

22nd December 2018 A new meeting for clinicians and science researchers has been announced in September 2019. The idea is to discuss therapy of the liver disease in α1-antitrypsin deficiency (AATD). The conference will provide a comprehensive overvie
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We celebrate being the oldest Alpha-1 UK charity with our 10th Year Celebration Day party

21st July 2018   On 8 July 2018, Alpha-1 Awareness hosted its 10 year Celebration Day, celebrating 10 years since the founding of the charity. World-renowned speakers were invited to share their knowledge on Alpha-1 Antitrypsin Deficiency, Profe
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New Children’s club

11th July 2018 EXCITING NEWS…. We have now launched the new Alphie Kids Club. The first club for children affected by Alpha-1 where they can come along and download colouring in pages, puzzles and become a member and receive our exclusive membe
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Our chairman Alan Wooler chosen as “Alpha-1 Leader in Action” in the latest Alpha-1 Global Newsletter

8th June 2018 Our charity is here to bring awareness of AATD and to support those affected.  We are making a big difference and many people rely on our help.  It is wonderful when other groups help to tell others who we are and what we do. In the lat
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Alpha-1 Awareness UK changes charity name

3rd June 2018 Our charity was originally created to support people affected in the UK with AATD.  It didn’t take long before we started to help those from other countries and today we stretch as far as Australia and New Zealand.  It is for this
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AlphaNet’s CEO Robert Barrett to Retire, New CEO named

May 21, 2018 AlphaNet President and CEO Robert C. Barrett has announced his retirement after 20 years at the helm of the innovative not-for-profit organization. The AlphaNet Board of Directors has named Mark B. Delvaux as his successor effective June
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European Lung Foundation advise on planning a flight

ELF (European Lung Foundation) has produced a poster to help make people with lung conditions aware of the steps they should take when planning a flight. It is available as a printable poster and a slide for digital screens; it’s available in 1
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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.