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.

 


 

Fund raisers

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.
Please help the below people by reading their stories, if you are able, please make a donation.

Alan & Emma Wooler

Emma and Alan are very proud parents of Amber and Tyler. Tyler is PiZZ and Amber is PiMZ (just as Alan & Emma are). Alpha-1 plays a very big part in their lives and they wanted to do something to help. They visited the 2017 one to help support a fundraiser who was walking in the event and they loved what they saw.
In Alan’s own word:”We didn’t just see the event, we felt the event, the atmosphere was amazing and the staff weren’t there just for a job, they had a passion for it. We loved it so much we had to get involved so signed up to do the 2018 TrekFest as soon as they opened their website. We are walking it for all Alphas out there & have setup a team, so, if anybody wants to come join us let us know using the Contact Us page on this site.
Their team page can be found here: www.justgiving.com/teams/alphatrek

 

Milly Fretwell

Milly is joining the Alpha Team.


 

Helen Moss ~ Eastbourne Beachy Head 10K ~  27th October 2018

Emma along with some of her family have recently been diagnosed as having Alpha-1.
“After recently being diagnosed with Alpha 1 Antitrypsin, which is a genetic condition that causes lung and liver problems.
The deficiency is a lack of protein ( alpha 1 antitrypsin ) which is produced in the liver. The main job of this is to protect the lungs, the deficiency can lead to life threatening lung and/or liver disease.
I have decided to do something completely out of my comfort zone by entering the Beachy head 10k, to raise money and awareness for this charity.
Whatever you can spare will be greatly appreciated.
 


John Gareth Trainor ~ Cycling the Pyrenees (all of them!)

Bike 5 days, 750 kilometers, 33,000 ft of altitude for Alpha 1 Awareness UK because my step sisters son has Alpha 1.

My step sisters little boy has Alpha 1. I want to raise money to raise awareness, help affected families and support research to hopefully lead towards a cure.
19 of us have signed up for this epic challenge. And we are almost certain a good number will not complete it. There will be a lot of pain (physically and emotionally), so lets make it worthwhile…


 

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 Latest News

 

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
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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
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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
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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
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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
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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
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FIND-A1 Project Launched

Alpha-1 Awareness UK is sponsoring a patient/doctor initiative to identify and accurately diagnose Alpha1 aptients in the UK. For more details, please see the  FIND-A1 section of this website.
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Discovery of Alpha1 Antitrypsin

Professor Dr Sabina M. Janciauskiene has written a history of the Discovery of Alpha1 Antitrypsin and given us permission to publish it here (303Kb PDF). The content is quite technical but with the help of a reference book or Wikipedia her history wi
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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.