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.
We currently have 5 people who are doing sponsored activities for us, each of them have setup Just Giving pages. Please help them by reading their story 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.

 

 

Sharon Simpson ~ 25k walk in the Peak District ~  2nd September 2017

Sharon is putting her feet to a challenge:

“I met my husband when he was in his early 40’s when he was fit and healthy and playing football twice a week. He was diagnosed with Alpha 1 when he was 48 and by the time we married just 2 years later he was already struggling with his breathing. Just 9 years later he was on oxygen most of the day and a double lung transplant was his only chance of survival. In December 2013 he received the gift of life from a wonderful organ donor and now we are making the most of every day we have as a couple and with our family.

We have already raised funds for the Freeman Heart and Lung Transplant Association and now want to raise money for the Alpha 1 awareness charity so that more research can be carried out to find a cure for this condition and save many lives.

Walk Details are here : www.trekfest.org.uk/the-peaks/

You can find her JustGiving page here: www.justgiving.com/fundraising/Sharon-Simpson19

 

 

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

 

 

 

British 10K Run

We once again secured 6 places in the British 10K Run, we had 5 people volunteer for the race, sadly only 4 were able to race on the day. To see how it went, click here.

Our Runners

Cori Ruktanonchai

You can find Cori & Nick’s JustGiving page here: www.justgiving.com/fundraising/Cori-and-Nick-Ruk

Daniel Wicker

I have a unique opportunity to help raise money for Alpha 1 Awareness UK as a 38 year old 185 pound entirely clean runner as always who has the SZ version of the SERPINA1 gene. The most severe version would be ZZ. Avoidance of cigarette smoke, lifestyle changes, and other activities will likely enable me to live a long and productive life. Other ALPHAs are not as fortunate and are in dire need of help. I do hope to encourage some of them to be more active and lead healthier lifestyles through running the British 10k. Please give….small amounts are better than none.

You can find Daniel’s Just Giving page here: www.justgiving.com/fundraising/DWicker

 

Nick Ruktanonchai

You can find Cori & Nick’s JustGiving page here: www.justgiving.com/fundraising/Cori-and-Nick-Ruk

Rachel Wilson

“I am running this race to help raise money for Alpha-1. This is a charity that a colleague of mine, Alan, holds close to his heart. After reading his story I thought it would be a great cause to support.”

You can find her JustGiving page here: www.justgiving.com/fundraising/Rachel-Wilson53

Sophie Goodwin

“I am running the Virgin British 10K in London for Alpha 1 Awareness UK because a good friend at work has a son with A1.

You can find her JustGiving page here: www.justgiving.com/fundraising/SG5

Donate with JustGiving


Latest News

 

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

November is Alpha-1 Awareness Month

Alpha-1 awareness is a year-round endeavour, but during the month of November we ask EVERYONE to become engaged and increase #Alpha1Awareness. To help you get started, we have created some free materials that you can download and print, share on soci
Read More

INFORMATION DAY

INFORMATION DAY Holiday Inn Bristol Filton, Filton Road, Hambrook, Bristol BS16 1QX SATURDAY OCTOBER 29th 2016 10.30am-3.45pm I am pleased to say we are once again holding an Information Day this year and would very like to invite you to join us, as
Read More

Some helpfull information from the British Lung Foundation

Welfare benefits Are you living on a lower income because of a lung condition? You might be entitled to extra support. Read our welfare benefits information > Take part in IPF Week IPF Week starts on 17 September. IPF is a condition that makes the
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.