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

 

European Lung Foundation advise on planning a flight

ELF (European Lung Foundation) has produced a poster to help make people with lung conditions aware of the steps they should take when planning a flight. It is available as a printable poster and a slide for digital screens; it’s available in 1
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Kamada Received Feedback from FDA on Proposed Phase 3 Protocol for Inhaled Alpha-1-Antitrypsin for Treatment

24th April 2018 As previously disclosed, in July 2017, Kamada submitted a proposed Phase 3 study protocol for Inhaled AAT for treatment of AATD to the FDA.  In response, in August 2017, the FDA issued a letter to the Company stating the agency’s cont
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Arrowhead Begins Dosing in Phase 1 Study of ARO-AAT

12th March 2018 PASADENA, Calif.–(BUSINESS WIRE)–Arrowhead Pharmaceuticals Inc. (NASDAQ: ARWR) today announced that it has dosed the first subjects in a Phase 1 clinical study of ARO-AAT, which is being developed as treatment for a rare g
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Arrowhead Receives Regulatory Clearance to Begin Phase 1 Study of ARO-AAT for Treatment of Alpha-1 Liver Disease

February 22, 2018 07:30 AM Eastern Standard Time PASADENA, Calif.–(BUSINESS WIRE)–Arrowhead Pharmaceuticals Inc. (NASDAQ: ARWR) today announced that it has received approval from the New Zealand Medicines and Medical Devices Safety Author
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Adverum Announces Completion of Dosing of First Cohort of Patients in the ADVANCE Phase 1/2 Clinical Trial of ADVM-043

MENLO PARK, Calif., Feb. 26, 2018 (GLOBE NEWSWIRE) — Adverum Biotechnologies, Inc. (Nasdaq:ADVM), a clinical-stage gene therapy company targeting unmet medical needs in serious rare and ocular diseases, today announced the completion of dosing
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Clinical Trial for Liver Disease Treatment Imminent After Orphan Drug Designation

Arrowhead Pharmaceuticals Inc. announced last week that the company’s second-generation investigational medicine ARO-AAT was granted orphan drug designation by the U.S. Food and Drug Administration (FDA). ARO-AAT is being developed for the treatment
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UCL’s own News article on our 25,000 donation to them

On the 20th January 2018 we went to UCL to give Professor David Lomas a cheque for £25,000 to go directly to the research of a cure for Alpha-1. You can see our original article here: http://www.alpha1.uk/portfolio/3493. You can see UCL’s news
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First John W. Walsh Translational Research Award Granted

MIAMI and BOSTON, Jan. 31, 2018 /PRNewswire/ — The Alpha-1 Foundation celebrates the first granting of the John W. Walsh Translational Research Award in Alpha-1 Antitrypsin Deficiency, an honorable award named after John W. Walsh, co-founder of
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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.