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.

 

 

 

 

Below are events to come

 

James Balson ~ Prague Half Marathon ~  7th April 2018

James is running his second race on behalf of our charity. This time the Prague Half Marathon with his sister Louise.

 

You can find his JustGiving page here: https://www.justgiving.com/fundraising/james-balson1

 

 

 

Louise Balson ~ Prague Half Marathon ~  7th April 2018

Lou is running her first half marathon with her brother James. It will be at the Prague Half Marathon.

 

“In just over 6 months I will be running the Prague Half Marathon with my biggest brother Jamie. It’s my first half marathon, and first time running a race since my school cross country days (bare in mind that was over 20 years ago!). I’ve never trained for a race. I run a handful of times a year, when I can be bothered, and it’s only ever 3-4 miles MAX, so a smidgen of a half marathon. This won’t be an easy task for me, despite what people may think of my fitness. I am not, and never have been, a runner. My family will vouch for that!

Help support me and others less fortunate by donating what you can, and providing me with encouragement … I’m gonna need it!   “

 

You can find her JustGiving page here: www.justgiving.com/fundraising/louise-balson

 

 

 

Danni Leadbetter ~ Skydive ~  Spring/Summer 2018

Danni is doing something amazing for our charity, her first ever skydive.

 

“Thanks for taking the time to visit my JustGiving page.

I am completing a skydive to mark my 21st Birthday, and I am looking to do this in Spring/Summer 2018. I thought this would be the perfect time to fundraise for a cause that is very close to my heart.

I am a carrier for Alpha 1, and my brother has Alpha 1, of which this effects him greatly. Alpha 1 is a genetic condition that not many people know about and can cause serious health problems. By fundraising for Alpha 1, more research can be completed and awareness can be raised to help people with this widely unknown genetic condition.”

 

You can find her JustGiving page here: www.justgiving.com/fundraising/danni-leadbetter

 

 

 

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.

 

 

 

Alan & Emma Wooler ~ 25k TrekFest ~  1st September 2018

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.
“You can find their JustGiving page here: www.justgiving.com/fundraising/alphawoolerTheir team page can be found here: www.justgiving.com/teams/alphatrek

 

 

 

 

 

 

 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.