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.

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 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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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.