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.

 

 


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

 

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: 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
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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.