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

 

Kamada Announces Enrollment of First Patient into its Pivotal Phase 3 InnovAATe Clinical Trial of Inhaled AAT for the Treatment of Alpha-1 Antitrypsin Deficiency

Rehovot, Israel, December 16, 2019 — Kamada Ltd. (NASDAQ & TASE: KMDA), a plasma-derived protein therapeutics company, announced today that the first patient has been randomized in Europe into its pivotal Phase 3 InnovAATe clinical trial evaluati
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Research Priorities in Alpha-1 antitrypsin deficiency (AATD)

We need your help! Being led by the European Alpha-1 Research Collaboration (EARCO), a survey has been created to give us all input on what we think are the priorities for research should be. We are asking people with Alpha-1 Antitrypsin Deficiency (
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New promotion, New Board Member and New website!

We at Alpha-1 Awareness have some wonderful news that we would like to share with you.   Internal Promotion Glyn Cockaday joined our charity Board 3 years ago as our Facebook Admin.  Glyn not only excelled at this role, but started to help with
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Lela Lackey receives an Alpha-1 Foundation Grant

July 30, 2019 Congratulations to Lela Lackey (postdoc, Alain Laederach’s lab) for receiving a grant from “Alpha-1 Foundation” to study the effects of non-coding mutations on the expression of the Alpha-1-antitrypsin protein. Dr. Lackey will investiga
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Dicerna™ to Begin Clinical Development of DCR-A1AT for Treatment of Patients with Alpha-1 Antitrypsin Deficiency-Associated Liver Disease

2nd July 2019 CAMBRIDGE, Mass.–(BUSINESS WIRE)–Jul. 2, 2019– DicernaTMPharmaceuticals, Inc. (Nasdaq: DRNA) (the “Company” or “Dicerna”), a leading developer of ribonucleic acid interference (RNAi) therapies, today announced it submi
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All UK sites now open for new drug trial (Astraeus Study) to explore oral compound for Alpha-1 lung disease

All UK sites now open for new drug trial (Astraeus Study) to explore oral compound for Alpha-1 lung disease 8 clinical trial sites now open across the UK for ASTRAEUS Study Alpha-1 Awareness and Alpha-1 UK Support Group are pleased to note that all e
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Arrowhead Preclinical Data Demonstrates RNAi Therapy Prevents and Reverses Alpha-1 Liver Disease at The International Liver Congress

Apr 12, 2019 PASADENA, Calif. –(BUSINESS WIRE)–Apr. 12, 2019– Arrowhead Pharmaceuticals Inc. (NASDAQ: ARWR) today presented preclinical data at The International Liver Congress™ 2019 (ILC), the annual meeting of the European
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Danish Researchers found a way to Produce Life-Saving Human Protein in CHO Cells for the Treatment of a Genetic Disorder

28th March 2019   Researchers from Technical University of Denmark have produced CHO or mammalian cell lines which can produce 1, 2 g/L recombinant Alpha-1-antitrypsin protein. This breakthrough research can lead to better treatment of Alpha-, a
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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.