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

 

Alpha-1 Clinics

The University Hospitals Coventry and Warwickshire have announced the establishment of the West Midlands Alpha-1 Antitrypsin Deficiency Service. The University Hospital Coventry already provides a multi-disciplinary service for patients with alpha-1
Read More

British 10K London Run

Alpha 1 Awareness has once again secured 6 places in the British 10K Run to be held on Sunday 12th July 2015.  Three of the places have been filled, so that means we still have 3 places to fill. Can any of your family or friends take those places and
Read More

Open Letter on Specialised Services

The Specialised Healthcare Alliance has today sent an open letter to the the PM and other political leaders expressing concerns about the provision of specialised services within the NHS.  Alpha-1 Awareness UK supports the work of the SHCA in improvi
Read More

Pledge for Patients

Rare Disease UK, Genetic Alliance UK and SWAN UK have joined forces to launch their first joint campaign. They write: “We’ve created a pledge card to ensure that whoever forms the next Government will be committed to ensuring patients aff
Read More

Policy Maker Award for Glenis Willmott MEP

The European Organisation for Rare Diseases (EURORDIS ) has presented its 2015 awards for excellence in the field of rare diseases.  The Policy Maker Award was presented to Mrs Glenis Willmott MEP at the EURORDIS Gala Dinner on Tuesday 24th February.
Read More

Children’s Liver Disease Foundation

The Children’s Liver Disease Foundation (CLDF) is starting a project to raise awareness of childhood liver disease.  Alpha-1 antitrypsin deficiency is one of the major contributors to severe liver disease in newborn children. Here is what the C
Read More

Consultation on Specialised Service

NHS England has launched its public consultation on how it will prioritise its investment in specialised services and treatments. In parallel with the consultation, NHS England is holding several workshops which you are invited to attend.  The consul
Read More

New Appointment for Professor Lomas

Professor David Lomas has been appointed to the post of Vice-Provost (Health) of University College London. Professor Lomas is currently Dean of the Faculty of Medical Sciences and Chair of Medicine, a position he has held from 1st January 2013. Prev
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.