Welcome to Alpha-1 Awareness UK, Support for people with Alpha-1 Antitrypsin Deficiency

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 are. 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.


Fund raisers

We would like to thank all those that raise money for us, without you, we would not have a charity.
Please help the below people by reading their stories and about what they are doing, if you are able, please make a donation.

The fundraisers below have been put into order of date of their events.

 

 

James Balson ~ Amsterdam Half Marathon ~  15th October 2017

James is running in his first half marathon to support his brother:

“Up until last year I had never even heard of A1AD, I am sure that not many of you have. Keeping things short, its something that has hit too close to home for me to ignore that it exists. So, if I can do anything to help raise awareness, at the same time some much needed cash, then I am more than willing to push myself as far as I can, to help others who cannot push so hard.

In 5 weeks I will be running the Amsterdam Half Marathon, its my first half marathon, and my first charity run, of many more to come.

Help support others less fortunate, by supporting me run 21km (13 miles).”

You can find his JustGiving page here: www.justgiving.com/fundraising/james-balson

 

James won’t be alone as our very own Cori will also be there running in the race. It is hoped that they can meet up at the beginning before the race starts.

 

Katie Rigny  ~  Kernow Destroyer  ~ 28th October 2017

Katie and friends are doing a very hard assault course in aid of the good friend Faith Toogood. This is no easy task due to the obstacles they put in your way trying to get you to stop. In the event organizers own words “PAIN IS ONLY TEMPORARY, FINISHING IS EVERYTHING!“.

 


A group of 8 of us are taking part in the Kernow Destroyer – 6 miles and 50 plus obstacles at the end of October. Billed as “Designed to push the strongest to their very limit, Kernow Killer is an obstacle course concealed within 9-12 miles of idyllic Cornish countryside. Forget working within your comfort zone, Kernow Killer will demand a new way of thinking. Determination, strength and stamina will be tested as you drag your body through a variety of obstacles. If you are looking for a new challenge this is it, Kernow Killer is the ultimate Cornish challenge”.

Basically it’s a very muddy gruelling event. Just what a bunch of middle aged women with limited fitness should do, we thought, and signed up right away. Except Millie, our fitness guru, who will take it in her stride and probably have to carry us all round the course!

We are supporting the Alpha1 Awareness UK Charity as this charity is close to all our hearts, as the gorgeous Coco and her family – our close friends Faith and Charlie from our local community – live and deal with Alpha 1 on a daily basis. A genetic condition, Alpha 1 antitrypsin deficiency affects the lungs and liver. The charity supports families affected and funds research into the condition.

You can find her JustGiving page here: www.justgiving.com/fundraising/katie-rigby6

More information on the event itself can be found here: www.kernowkiller.co.uk/about-us

 

 

Matt Rowley ~ The Race Across Scotland 2018 ~  18th – 22nd August 2018

Matt Rowley is doing something amazing for Alpha’s. In his words:

” I am running 200 miles across Great Britain to help raise money and awareness for the charity Alpha 1 Awareness UK and the condition alpha-1 antitrypsin deficiency.

My Mum has AATD and as a result has had two lung reduction operations to help her breath more easily and to give her a better quality of life. Without others in the past supporting research for AATD I doubt she would be with us today.”

Race Details: http://www.gbultras.com/ultra-great-britain-2018/

You can find his JustGiving page here: https://www.justgiving.com/fundraising/Running200Alpha1

Paul is doing running events all through the year, you can see some photos that he has sent us here on his page.

 

 

 

 

Donate with JustGiving


Latest News

 

BBC TV Show ‘Doctors’ to show Alpha-1 patient

    On the 8th May 2017 @ 13:45 on BBC 1, The TV Show ‘Doctors’ shows a family affected by Alpha-1 The episode is titled: Lizzie’s Last Stand It is not very often that we see Alpha-1 mentioned in a TV show, so this is excellent publ
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Is Standard COPD Therapy Effective In Alpha-1 Antitrypsin Deficiency?

Intravenous augmentation may slow the progression of emphysema in patients with alpha-1 antitrypsin deficiency (AATD), but other treatment options for non-AATD-related chronic obstructive pulmonary disease (COPD) may not be effective in these patient
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Z Factor, a Cambridge University spin-out, has raised £7 million to discover new drugs to fight Alpha-1

Z Factor, a Cambridge University spin-out, has raised £7 million to discover new drugs to fight liver and lung disease caused by a major gene defect. The Series A has been led by existing investor Medicxi. Cambridge Enterprise and Cambridge Innovatio
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April 2017 Newsletter

Earlier this month we sent out to all of our charity members our latest Newsletter. In respect for all of our members, we did not make this public till we were sure that our members have received and had time to read it. I am pleased to say that it h
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JW Walsh Fund to Cure COPD

The JW Walsh Fund to Cure COPD has been established to honor John W. Walsh, founder of the COPD Foundation. Often referring to himself as the “impatient patient”, John’s call to action was to educate, engage and empower. His contributions to empowerm
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Alpha-1 Foundation Announces Passing John Walsh

1949 – 2017   The Alpha-1 Foundation announced that their Co-founder and Director Emeritus John W. Walsh passed away on the 7th March 2017 surrounded by his loving family. John W. Walsh John touched the lives of countless people through his comm
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Shark-inspired drug may help treat fibrosis, researchers say

Australian scientists hope a drug that mimics part of a shark’s immune system may help treat an incurable lung disease.     Idiopathic pulmonary fibrosis (IPF) scars lung tissue, causing breathing to become progressively harder. It ki
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John Mugford sadly passes away

John Mugford, chair of the Alpha-1 UK Support Group, passed away peacefully at home on Jan. 30. He was 65. (From left to right: Sheila Mugford, John Mugford, Darryl Mugford, Paul Mugford and Ryan Mugford) Mugford was diagnosed with Alpha-1 in 1999 af
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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.