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.


Charity to close

16th September 2021

After much debate and a considerable amount of time and thought, it is with great sadness we must announce that the Alpha-1 Awareness charity will not be continuing.  As of the 26th September 2021 we will be dissolving.

Given the above circumstance the AGM that was planned for the 25th will no longer go ahead.

 

Unfortunately, we have not been able to fill the chair role, with everyone on the board being volunteers and many having full time jobs and other commitments, it has not been possible for any of us to take on that position.  I know I speak for all the board when I say we truly wish we were able to continue, but we would not be giving it the time and effort it deserves.

 

We would like to thank all fundraisers and supporters past and present who have helped raise money to this charity whether it be large or small.  All the remaining charity funds will be going towards research in the hope to find that illusive cure.

 

We are, however, going to keep the Facebook group running  (it can be found here: https://www.facebook.com/groups/alpha1awarenessuk), as we still wish to offer all our members support within a safe environment. The group is more like an extended family and we would hope that many of our ‘family members’ will continue on with us.

 

We are truly sorry that we have to let the charity close, it feels like the end of an era, but please know that we will still be here to support you.

 

From all of us on the Board


 Latest News

 

The sad passing of Dawn Haywood- Jones

21st March 2019 It is with great sadness that we have to write about the sad passing of Dawn Haywood- Jones. Dawn along with 3 other people started Alpha-1 Awareness in 2008 in the hope that they could reach out to fellow sufferers and to educate the
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UK trial sites open for ASTRAEUS Study into Alpha-1 Antitrypsin Lung Disease

Alpha-1 Awareness & Alpha-1 UK Support Group are very pleased to announce exciting news about a new drug trial for the UK A clinical research trial of a potential new therapy for adults affected by Alpha-1 Antitrypsin-related lung disease has ope
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Alpha-1 Awareness donates £10,000 to the research of a cure

27th February 2019 Alpha-1 Awareness is dedicated to contributing a minimum of 10% of its funds raised towards research to find a cure for this condition. In 2018, we went above and beyond this target, donating £25,000 to the patron of the Charity, P
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Alpha-1 Awareness visits Mereo BioPharma

On Monday 17th December we went to see Mereo BioPharma at their office in London. Mereo BioPharma have recently started dosing in their Phase 2 clinical trial for MPH-966 (alvelestat). The study will recruit in America, Canada, Europe and the UK. The
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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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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.