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.


 Latest News

 

Our charity donates £25,000 to the research of a cure

On the 20th January 2018 Alpha-1 Awareness UK went to London to see Professor David Lomas. We were there to make a £25,000 (yes, Twenty Five Thousand pounds) donation to go to the research of a cure for Alpha-1. We were shown around his different lab
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Kamada Reports Collaboration with Hospital Consortium to Evaluate Alpha-1 Antitrypsin …

Kamada Ltd. (NASDAQ: KMDA) today announced a collaboration with the Mount Sinai Acute GvHD International Consortium (MAGIC) to conduct a proof-of-concept clinical trial assessing the safety and preliminary efficacy of Kamada’s Alpha-1-Antitrypsin (AA
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Adverum Biotechnologies Doses First Patient in the ADVANCE Phase 1/2 Clinical Trial

29th December 2018 — Company Expects to Report Preliminary Data in the Second Half of 2018 — MENLO PARK, Calif., Dec. 28, 2017 — Adverum Biotechnologies, Inc. (Nasdaq:ADVM), a clinical-stage gene therapy company targeting unmet medical needs in serio
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Organovo announces the FDA has granted orphan drug designation for the Company’s treatment of alpha-1

28 December 2017 –  Organovo Holdings (NASDAQ:ONVO) announces that the FDA has granted orphan drug designation for the Company’s treatment of alpha-1 antitrypsin deficiency (“A1AT”) with its 3D bioprinted liver therapeutic tissue. Among the ben
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Kamada Announces Collaboration with BGN Technologies for Alpha-1 Antitrypsin Research

7th September 2017 –  Collaboration to be Led by Professor Eli Lewis, One of World’s Leading Alpha-1 Antitrypsin Researchers Kamada Ltd., a plasma-derived protein therapeutics company focused on orphan indications, announced today a colla
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Amanda Stimpson – Joins the Charity Board

2nd September 2017 –  Amanda was diagnosed as being an Alpha end of 2016, she like everybody who is told they have a condition that they have never heard of, was very worried about he future. Amanda found our charity and we were able to put her
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Cori Ruktanoncha becomes a Trustee of the charity

30th August 2017 –  We are very honored that Cori agreed to become the 4th Trustee of our charity. Cori only joined us in the beginning of 2017, but we have been very impressed with the work she has done for us, the way she talks to our members
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New Logo and Domain name

1th July 2017 –  We announced in April we were donating 10% of all donations to finding a cure for Alpha-1. We now wish to announce 2 more exciting changes. We were the first alpha-1 support group to receive charity status in the UK, Wales and
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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.