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

 

Campaign for better Access

The Alpha-1 community has formed an unprecedented alliance to campaign for better access to treatment for Alpha-1 patients. The recently established Alpha-1 Alliance will be campaigning for a nationally commissioned specialised service for Alpha-1 an
Read More

World Spirometry Day 2012

The World Spirometry Day 2012 campaign coincides with the Olympic Games and aims to encourage people to exercise and look after their lungs regardless of their age or physical ability. Their website, www.wsd2012.org, is a useful source of information
Read More

New Board Member

For some time Wendy Rogerson has been helping members of Alpha-1 Awareness with issues relating to Disabled Living Allowance and Employment and Support Allowance. Wendy, modestly, claims not to be an expert and to have only learned from experience wi
Read More

Breakthrough to Cure?

For the first time, scientists have cleanly corrected a human gene mutation in a patient’s stem cells. The result, reported in Nature brings the possibility of patient-specific therapies closer to becoming a reality. Scientists, at the Wellcome
Read More

Visit to Paediatric Liver Unit

One of our supporters ran in this year’s London Marathon and raised a large amount of money for Alpha-1 Awareness. We were overwhelmed by the size of this donation. The athlete, who is an Alpha herself, has a young son (PiZZ alpha) who is treated at
Read More

Patient Information Day

Two major announcements were made at the patient Information Day held in Glasgow. The first was that Professors Sabina Janciaskiene and David Lomas have become patrons of the Alpha 1 Awareness UK charity. Professor Janciauskiene is based at the Hanov
Read More

Rare Disease Day 2011

To mark Rare Disease Day 2011, Rare Disease UK will be holding four parliamentary receptions across the UK to bring all those with an interest in rare diseases together to highlight the issue to politicians. They will be holding receptions on the fol
Read More

New Rare Disease Report

New Rare Disease UK report “Experiences of Rare Diseases: An insight from patients and families” The report, “Experiences of Rare Diseases: An insight from patients and families”, deals with the views and experiences of 600 patients and families affe
Read More

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.