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.


Charity to close

16th September 2021

After much debate and a considerable amount of time and thought, it is with great sadness we must announce that the Alpha-1 Awareness charity will not be continuing.  As of the 26th September 2021 we will be dissolving.

Given the above circumstance the AGM that was planned for the 25th will no longer go ahead.

 

Unfortunately, we have not been able to fill the chair role, with everyone on the board being volunteers and many having full time jobs and other commitments, it has not been possible for any of us to take on that position.  I know I speak for all the board when I say we truly wish we were able to continue, but we would not be giving it the time and effort it deserves.

 

We would like to thank all fundraisers and supporters past and present who have helped raise money to this charity whether it be large or small.  All the remaining charity funds will be going towards research in the hope to find that illusive cure.

 

We are, however, going to keep the Facebook group running  (it can be found here: https://www.facebook.com/groups/alpha1awarenessuk), as we still wish to offer all our members support within a safe environment. The group is more like an extended family and we would hope that many of our ‘family members’ will continue on with us.

 

We are truly sorry that we have to let the charity close, it feels like the end of an era, but please know that we will still be here to support you.

 

From all of us on the Board


 Latest News

 

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
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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
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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
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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
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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
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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
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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
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RCSI team to start trial for promising Covid-19 therapy for severe infections

Researchers in Ireland are hoping to add to the growing list of drug candidates for the treatment of patients with severe Covid-19 infection. A team from the Royal College of Surgeons in Ireland (RCSI) has published a paper in the American Journal of
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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.