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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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.