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 Children’s club

11th July 2018 EXCITING NEWS…. We have now launched the new Alphie Kids Club. The first club for children affected by Alpha-1 where they can come along and download colouring in pages, puzzles and become a member and receive our exclusive membe
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Our chairman Alan Wooler chosen as “Alpha-1 Leader in Action” in the latest Alpha-1 Global Newsletter

8th June 2018 Our charity is here to bring awareness of AATD and to support those affected.  We are making a big difference and many people rely on our help.  It is wonderful when other groups help to tell others who we are and what we do. In the lat
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Alpha-1 Awareness UK changes charity name

3rd June 2018 Our charity was originally created to support people affected in the UK with AATD.  It didn’t take long before we started to help those from other countries and today we stretch as far as Australia and New Zealand.  It is for this
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AlphaNet’s CEO Robert Barrett to Retire, New CEO named

May 21, 2018 AlphaNet President and CEO Robert C. Barrett has announced his retirement after 20 years at the helm of the innovative not-for-profit organization. The AlphaNet Board of Directors has named Mark B. Delvaux as his successor effective June
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European Lung Foundation advise on planning a flight

ELF (European Lung Foundation) has produced a poster to help make people with lung conditions aware of the steps they should take when planning a flight. It is available as a printable poster and a slide for digital screens; it’s available in 1
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Kamada Received Feedback from FDA on Proposed Phase 3 Protocol for Inhaled Alpha-1-Antitrypsin for Treatment

24th April 2018 As previously disclosed, in July 2017, Kamada submitted a proposed Phase 3 study protocol for Inhaled AAT for treatment of AATD to the FDA.  In response, in August 2017, the FDA issued a letter to the Company stating the agency’s cont
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Arrowhead Begins Dosing in Phase 1 Study of ARO-AAT

12th March 2018 PASADENA, Calif.–(BUSINESS WIRE)–Arrowhead Pharmaceuticals Inc. (NASDAQ: ARWR) today announced that it has dosed the first subjects in a Phase 1 clinical study of ARO-AAT, which is being developed as treatment for a rare g
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Arrowhead Receives Regulatory Clearance to Begin Phase 1 Study of ARO-AAT for Treatment of Alpha-1 Liver Disease

February 22, 2018 07:30 AM Eastern Standard Time PASADENA, Calif.–(BUSINESS WIRE)–Arrowhead Pharmaceuticals Inc. (NASDAQ: ARWR) today announced that it has received approval from the New Zealand Medicines and Medical Devices Safety Author
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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.