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.
 


 

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 Latest News

 

Organovo announces the FDA has granted orphan drug designation for the Company’s treatment of alpha-1

28 December 2017 –  Organovo Holdings (NASDAQ:ONVO) announces that the FDA has granted orphan drug designation for the Company’s treatment of alpha-1 antitrypsin deficiency (“A1AT”) with its 3D bioprinted liver therapeutic tissue. Among the ben
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Kamada Announces Collaboration with BGN Technologies for Alpha-1 Antitrypsin Research

7th September 2017 –  Collaboration to be Led by Professor Eli Lewis, One of World’s Leading Alpha-1 Antitrypsin Researchers Kamada Ltd., a plasma-derived protein therapeutics company focused on orphan indications, announced today a colla
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Amanda Stimpson – Joins the Charity Board

2nd September 2017 –  Amanda was diagnosed as being an Alpha end of 2016, she like everybody who is told they have a condition that they have never heard of, was very worried about he future. Amanda found our charity and we were able to put her
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Cori Ruktanoncha becomes a Trustee of the charity

30th August 2017 –  We are very honored that Cori agreed to become the 4th Trustee of our charity. Cori only joined us in the beginning of 2017, but we have been very impressed with the work she has done for us, the way she talks to our members
Read More

New Logo and Domain name

1th July 2017 –  We announced in April we were donating 10% of all donations to finding a cure for Alpha-1. We now wish to announce 2 more exciting changes. We were the first alpha-1 support group to receive charity status in the UK, Wales and
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UK’s National Health Service Approves Daxas as Treatment for COPD

28th June 2017 –  The United Kingdom’s National Institute for Health and Care Excellence (NICE) recently approved Daxas (roflumilast), developed by AstraZeneca, as a treatment for chronic obstructive pulmonary disease (COPD). The new indication
Read More

Kamada Withdraws MAA For Inhaled Alpha-1 Antitrypsin

23rd June 2017 –  Kamada Ltd. (NASDAQ:KMDA) (TASE:KMDA), a plasma-derived protein therapeutics company focused on orphan indications, today announced that the Company has withdrawn the Marketing Authorization Application (MAA) for its proprieta
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Kamada Presents Updated Data from Phase 2 Clinical Trial of Inhaled Treatment of AAT

Previously announced top-line data from this trial indicated that patients treated with Kamada’s inhaled AAT demonstrated a significant increase in endothelial lining fluid (ELF), AAT antigenic and ANEC levels compared to the placebo group. The updat
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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.