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.

 


 

Fund raisers

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.
Please help the below people by reading their stories, if you are able, please make a donation.

Gemma Vivian ~ London Marathon ~  22nd April 2018

Thank you so much Gemma for doing this in our name.


British 10K Run (London) ~  15th July 2018

It is that time of year again where we are planning for the London 10K Run. We have tickets to give away for free! All we ask is that you create a Just Giving page, link it to our charity and agree to get a minimum of £200 in donations. To view more information about the race as well as apply for a ticket, click here

Roisin, Sinead & Niamh

In Niamh’s own words:

“As you are aware I have two sets of twins, Caoimhe and Cara aged two and Aodhán and Saoirse aged 3 months.

We recently found out that all four of my beautiful children have Alpha-1. I didn’t even know this lifelong illness existed until they were born! Sadly it affects their liver and lungs. Currently all four are doing really well and are defying the odds. However, having the illness means that they may need a liver transplant in their life. Initially it only affects the liver, but during adolescence and adulthood it starts to affect their lungs. This will lead to hospitalisation and they will have to live a very safe lifestyle.

If you know me then you know I am an absolute slob who enjoys nothing more than sneaking a cuddle nap in with all four of the clan! I’m running this 10K not only to raise awareness of Alpha-1 but also to get myself fit so if he worse outcomes happen, I am healthy and fit and able to look after my children to help them through the hard times. “

Josie Kane

“I am doing the 10km in Westminster to show my support to my dear Friend Roisin and her sisters (Niamh and Sinead). I could have just donated money, but what better way to donate, than just run with my pack and help raise more money :)”

Jade Bay

“When I was 21 I was diagnosed as a carrier of Alpha-1 Antitrypsin Deficiency. Alpha -1 is a genetic condition that not many people know about and can cause serious health problems. There was a 50/50 chance of me getting this.

A deficiency can lead to life-threating lung and/or liver disease. Having this illness means that myself and some members of my family may need a liver transplant in our lives. There is currently no cure for Alpha – 1.

By fundraising for this cause, it will allow more research and awareness of this unknown genetic condition.”


Alan & Emma Wooler

Emma and Alan are very proud parents of Amber and Tyler. Tyler is PiZZ and Amber is PiMZ (just as Alan & Emma are). Alpha-1 plays a very big part in their lives and they wanted to do something to help. They visited the 2017 one to help support a fundraiser who was walking in the event and they loved what they saw.
In Alan’s own word:”We didn’t just see the event, we felt the event, the atmosphere was amazing and the staff weren’t there just for a job, they had a passion for it. We loved it so much we had to get involved so signed up to do the 2018 TrekFest as soon as they opened their website. We are walking it for all Alphas out there & have setup a team, so, if anybody wants to come join us let us know using the Contact Us page on this site.
Their team page can be found here: www.justgiving.com/teams/alphatrek

 

Milly Fretwell

Milly is joining the Alpha Team.


 

Helen Moss ~ Eastbourne Beachy Head 10K ~  27th October 2018

Emma along with some of her family have recently been diagnosed as having Alpha-1.
“After recently being diagnosed with Alpha 1 Antitrypsin, which is a genetic condition that causes lung and liver problems.
The deficiency is a lack of protein ( alpha 1 antitrypsin ) which is produced in the liver. The main job of this is to protect the lungs, the deficiency can lead to life threatening lung and/or liver disease.
I have decided to do something completely out of my comfort zone by entering the Beachy head 10k, to raise money and awareness for this charity.
Whatever you can spare will be greatly appreciated.
 


 

 Donate with JustGiving

 Latest News

 

New Board Member

For some time Wendy Rogerson has been helping members of Alpha-1 Awareness with issues relating to Disabled Living Allowance and Employment and Support Allowance. Wendy, modestly, claims not to be an expert and to have only learned from experience wi
Read More

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

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.