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 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 18th September 2021

Sadly Global Adventures has cancelled the 2020 event due to COVID-19.

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

 

Breakthrough to Cure?

For the first time, scientists have cleanly corrected a human gene mutation in a patient’s stem cells. The result, reported in Nature brings the possibility of patient-specific therapies closer to becoming a reality. Scientists, at the Wellcome
Read More

Visit to Paediatric Liver Unit

One of our supporters ran in this year’s London Marathon and raised a large amount of money for Alpha-1 Awareness. We were overwhelmed by the size of this donation. The athlete, who is an Alpha herself, has a young son (PiZZ alpha) who is treated at
Read More

Patient Information Day

Two major announcements were made at the patient Information Day held in Glasgow. The first was that Professors Sabina Janciaskiene and David Lomas have become patrons of the Alpha 1 Awareness UK charity. Professor Janciauskiene is based at the Hanov
Read More

Rare Disease Day 2011

To mark Rare Disease Day 2011, Rare Disease UK will be holding four parliamentary receptions across the UK to bring all those with an interest in rare diseases together to highlight the issue to politicians. They will be holding receptions on the fol
Read More

New Rare Disease Report

New Rare Disease UK report “Experiences of Rare Diseases: An insight from patients and families” The report, “Experiences of Rare Diseases: An insight from patients and families”, deals with the views and experiences of 600 patients and families affe
Read More

FIND-A1 Project Launched

Alpha-1 Awareness UK is sponsoring a patient/doctor initiative to identify and accurately diagnose Alpha1 aptients in the UK. For more details, please see the  FIND-A1 section of this website.
Read More

Discovery of Alpha1 Antitrypsin

Professor Dr Sabina M. Janciauskiene has written a history of the Discovery of Alpha1 Antitrypsin and given us permission to publish it here (303Kb PDF). The content is quite technical but with the help of a reference book or Wikipedia her history wi
Read More

Kamada-Baxter Agreement

Kamada enters into an exclusive distribution and manufacturing agreement with Baxter International for Kamada’s treatment of Alpha-1 antitrypsin Deficiency, the inhaled product called Glassia. Kamada will receive staged payments of $45m including an
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.