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.

 

News

We have a separate site at www.alpha1.news which reports on all Alpha-1 related news from around the world.  If you would like to learn what is happening with Treatments, Research, Alpha-1 Mentions in the press, Other World group’s news and our own charity news, then you need to take a look at our news website.


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 

18th May 2020 – If you are a parent, you are probably concerned over the recent announcement from the government about re-opening the schools.  Should your child go back now?  Sadly nobody is able to give you a Yes or No answer.  You may find a small article we have titled “A Personal View of a Teacher and Mum about reopening of schools and Alpha” which was written by one of our Trustees useful.


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

Sadly due to COVID-19 we are postponing our planned 2020 Information Day and are moving it to 2021 to keep our members safe.  We cannot in good conscious put anybody at risk.
Our AGM is still booked for the same date and time, we will though be moving it to a telephone conference call.  If you would like to join us, click here to let us know.

 

Our 2021 AGM will be on Saturday 11th September at the Holiday Inn Birmingham M6, Jct. 7 & Our Information Day will be on Sunday 12th September at the same venue.
Please click on the below AGM button 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.

Our Info Day is a great way 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 Sadly the event has been postponed until 2021.  If you are interested in the race, please let us know now so that we can notify you as soon as we have been told the new date.

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 2020/2021

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
Date: Saturday 18th September 2021

Global Adventures is hoping that the 2020 event will still continue.  We are though advising people that due to COVID-19, the 2020 Trek will probably not be able to take place.  
The majority of our team who were booked to do the 2020 trek have taken the decision to instead move to the 2021 trek.

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

 

New Children’s club

11th July 2018 EXCITING NEWS…. We have now launched the new Alphie Kids Club. The first club for children affected by Alpha-1 where they can come along and download colouring in pages, puzzles and become a member and receive our exclusive membe
Read More

Our chairman Alan Wooler chosen as “Alpha-1 Leader in Action” in the latest Alpha-1 Global Newsletter

8th June 2018 Our charity is here to bring awareness of AATD and to support those affected.  We are making a big difference and many people rely on our help.  It is wonderful when other groups help to tell others who we are and what we do. In the lat
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Alpha-1 Awareness UK changes charity name

3rd June 2018 Our charity was originally created to support people affected in the UK with AATD.  It didn’t take long before we started to help those from other countries and today we stretch as far as Australia and New Zealand.  It is for this
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AlphaNet’s CEO Robert Barrett to Retire, New CEO named

May 21, 2018 AlphaNet President and CEO Robert C. Barrett has announced his retirement after 20 years at the helm of the innovative not-for-profit organization. The AlphaNet Board of Directors has named Mark B. Delvaux as his successor effective June
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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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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.