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.

 

 


Alpha-1 in the time of COVID-19

We understand that this is a very concerning time for Alpha’s, and we’re here to provide you as much information and support as we have within a rapidly changing context. To find out more about coronavirus and Alpha-1 antitrypsin deficiency, please visit our page here. We strive to update this page as often as we can, given evolving developments and advice, so please check back frequently.

“MERS Coronavirus Particles” by National Institutes of Health (NIH) is licensed under CC BY-NC 2.0 

 


Our charity to host it’s next Information Day and AGM

We will be holding our next AGM on Saturday 26th September at the Holiday Inn Birmingham M6, Jct. 7.
Please click on the below to let us know if you are happy with the officers that run the charity.  Do you have any questions for us?  Would you like to join us at our meeting?   Please spare just 20 seconds of your time to answer 6 yes/no questions.

On the 27th September we will be hosting our Info Day.  This is a great event to meet and chat with other Alphas from all over the UK and to hear talks from professionals about Alpha-1 and other related items.  After all of the talks have been given, we will break out onto separate tables so that everybody gets a chance to chat to our professional speakers.  Many people with Alpha-1 will not get the chance to speak to a specialist net alone over a coffee in a relaxed environment.

If you would like to join us, please click on the images below to be taken to our booking forms.


 


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.

If you are wanting to help raise funds for our charity, please let us know by using our Contact Us form.

 

We have 2 exciting events coming this year for those who like the outdoors.  Please take a look at them and if you are interested in a free ticket, let us know.

ASICS London 10k (British 10K Run)

The British 10K is well known as one of the world’s greatest road race route. Passing through the heart of London you’ll see many of the capital’s most iconic landmarks.

Details

Date: Sunday 5th July 2020

Location: London

Event Category: Run

Distance: 10K (6.22 miles)

Cost for a ticket: Free

Minimum Fundraising Pledge: £200

Amount of tickets we have remaining: 5

To learn more, click here.

TrekFest The Beacons 2020

TrekFest is the UK’s ultimate trekking challenge. Take on an epic trek through open countryside, walking side by side with hundreds of like-minded individuals all with the same goal in mind – to cross the finish line.

Details

Date: Saturday 19th September 2020

Location:  Brecon Showground, Wales

Event Category: Hike

Distance: 25K (15.5 miles)  or 50K (31 miles)

Cost for a ticket: Free

Minimum Fundraising Pledge: £250 for the 25k   or £310 for the 50k

To learn more, click here.


 Latest News

 

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
Read More

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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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.