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.

 


AGM

Every year we hold our AGM.  This is your opportunity to inform us about the running of the charity,  and to express your views and pose questions.

We would like to invite you to our AGM which is on Saturday 1st June 2019 at 1:45pm via a Skype call.  Please use the AGM Form here to tell us that you are happy with the appointed Officers and Trustees, to ask any questions you may have and to let us know if you would like to join our call.

 


 

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

 

Paul Amos’s Tandem Skydive raises over £1,200

We at Alpha-1 Awareness UK would like to say a big thank you to Paul Amos for the money that he has raised for us. As of the 15th May 2017, Paul has raised £1,201 (including Gift Aid) doing a tandem skydive on the 14th May 2017. “I’d like to raise as
Read More

BBC TV Show ‘Doctors’ to show Alpha-1 patient

    On the 8th May 2017 @ 13:45 on BBC 1, The TV Show ‘Doctors’ shows a family affected by Alpha-1 The episode is titled: Lizzie’s Last Stand It is not very often that we see Alpha-1 mentioned in a TV show, so this is excellent publ
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Is Standard COPD Therapy Effective In Alpha-1 Antitrypsin Deficiency?

Intravenous augmentation may slow the progression of emphysema in patients with alpha-1 antitrypsin deficiency (AATD), but other treatment options for non-AATD-related chronic obstructive pulmonary disease (COPD) may not be effective in these patient
Read More

Z Factor, a Cambridge University spin-out, has raised £7 million to discover new drugs to fight Alpha-1

Z Factor, a Cambridge University spin-out, has raised £7 million to discover new drugs to fight liver and lung disease caused by a major gene defect. The Series A has been led by existing investor Medicxi. Cambridge Enterprise and Cambridge Innovatio
Read More

April 2017 Newsletter

Earlier this month we sent out to all of our charity members our latest Newsletter. In respect for all of our members, we did not make this public till we were sure that our members have received and had time to read it. I am pleased to say that it h
Read More

JW Walsh Fund to Cure COPD

The JW Walsh Fund to Cure COPD has been established to honor John W. Walsh, founder of the COPD Foundation. Often referring to himself as the “impatient patient”, John’s call to action was to educate, engage and empower. His contributions to empowerm
Read More

Alpha-1 Foundation Announces Passing John Walsh

1949 – 2017   The Alpha-1 Foundation announced that their Co-founder and Director Emeritus John W. Walsh passed away on the 7th March 2017 surrounded by his loving family. John W. Walsh John touched the lives of countless people through his comm
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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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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.