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.

 


AGM

Every year we hold our AGM.  This is your opportunity to inform us about the running of the charity,  and to express your views and pose questions.

We would like to invite you to our AGM which is on Saturday 1st June 2019 at 1:45pm via a Skype call.  Please use the AGM Form here to tell us that you are happy with the appointed Officers and Trustees, to ask any questions you may have and to let us know if you would like to join our call.

 


 

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.

Fundraisers

Please take a moment to read what our fundraisers are doing and if you are able, to donate something to them.

Pauline Laybourne

“On 17 August 2019, my husband Colin Laybourne and our friend Rae Davies will be walking along the Llanberis Path to the summit of Snowdon, North Wales to raise much needed money and awareness of Alpha 1 Antitrypsin Deficiency (AATD). “

 

To learn more, click here.

 

 


 Latest News

 

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: https://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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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
Read More

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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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.