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

 

New blood test predicts which COVID-19 patients will develop severe infection

18th October 2020      Prof. Gerry McElvaney, Chairman of the Department of Medicine and Vice Dean of the School of Medicine, Royal College of Surgeons in Ireland and Prof. Gerard Curley,   Professor of Anaesthesia and Critical Care at
Read More

Vertex Abandons VX-814 Program for Treating Rare Liver Disease

18th October 2020   Vertex Pharmaceuticals announced that based on early data of its Phase II trial of VX-814 in Alpha-1 antitrypsin deficiency (AATD), it is halting the trial and ending development of the drug. AATD is a genetic disease resulti
Read More

BBC documentary Surgeons: At the edge of life will show AATD patient receive a double lung transplant.

On Tuesday 20 October, the BBC documentary Surgeons: At the edge of life will show David (pictured below) receiving a double lung transplant. David received his new lungs earlier this year at the Royal Papworth Hospital, Cambridge. The show airs on B
Read More

Grifols begins phase 3 testing for COVID-19 treatment

  RESEARCH TRIANGLE PARK — Grifols, a global biotherapeutics company, has begun Phase 3 clinical trials in patients with COVID-19 with its therapeutic manufactured in Clayton. The Spanish company is testing its hyperimmune globulin for its safet
Read More

Can you help name the new Baby Bears?

Exciting news!   Alphie and Tripsy are delighted to welcome a new sister and brother to their Alpha family.  But they now need your help. We need names for our new mini bears.  Just fill out the form on our web site with up to 5 names each for o
Read More

Carriers of two genetic mutations at greater risk for illness and death from COVID-19

Tel Aviv University researchers suggest that carriers of the genetic mutations PiZ and PiS are at high risk for severe illness and even death from COVID-19. These mutations lead to deficiency in the alpha1-antitrypsin protein, which protects lung tis
Read More

Healthy PiMZ Alphas required for a new trial

If you are a healthy PiMZ then please consider taking part in this exciting Alpha-1 clinical trial. Please contact HMR direct using the contact email shown below quoting 20B005 in your email. If you have any concerns with participating right now due
Read More

First subject dosed with ZF874, a potential disease-modifying treatment for alpha-1-antitrypsin deficiency

Z Factor Ltd, a Cambridge-based drug development company spun out of the University of Cambridge, announced that the first human volunteer was dosed today with ZF874, its novel treatment for alpha-1-antitrypsin deficiency (AATD). AATD is a common gen
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.