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.

 

 


Our charity to host it’s next Information Day and AGM

We will be holding our next AGM on Saturday 26th September at the Holiday Inn Birmingham M6, Jct. 7.
Please click on the below to let us know if you are happy with the officers that run the charity.  Do you have any questions for us?  Would you like to join us at our meeting?   Please spare just 20 seconds of your time to answer 6 yes/no questions.

On the 27th September we will be hosting our Info Day.  This is a great event to meet and chat with other Alphas from all over the UK and to hear talks from professionals about Alpha-1 and other related items.  After all of the talks have been given, we will break out onto separate tables so that everybody gets a chance to chat to our professional speakers.  Many people with Alpha-1 will not get the chance to speak to a specialist net alone over a coffee in a relaxed environment.

If you would like to join us, please click on the images below to be taken to our booking forms.


 


Fundraising

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.

If you are wanting to help raise funds for our charity, please let us know by using our Contact Us form.

 

We have 2 exciting events coming this year for those who like the outdoors.  Please take a look at them and if you are interested in a free ticket, let us know.

ASICS London 10k (British 10K Run)

The British 10K is well known as one of the world’s greatest road race route. Passing through the heart of London you’ll see many of the capital’s most iconic landmarks.

Details

Date: Sunday 5th July 2020

Location: London

Event Category: Run

Distance: 10K (6.22 miles)

Cost for a ticket: Free

Minimum Fundraising Pledge: £200

Amount of tickets we have remaining: 5

To learn more, click here.

TrekFest The Beacons 2020

TrekFest is the UK’s ultimate trekking challenge. Take on an epic trek through open countryside, walking side by side with hundreds of like-minded individuals all with the same goal in mind – to cross the finish line.

Details

Date: Saturday 19th September 2020

Location:  Brecon Showground, Wales

Event Category: Hike

Distance: 25K (15.5 miles)  or 50K (31 miles)

Cost for a ticket: Free

Minimum Fundraising Pledge: £250 for the 25k   or £310 for the 50k

To learn more, click here.


 Latest News

 

Stem Cells – Liver

Japanese researchers say that they have been able to grow a functional liver using stem cells. Takanori Takebe of Yokohoma City University presented the work at the International Society for Stem Cell Research conference in Yokohoma last week.  The t
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Westcountry Informal Lunch

Westcountry Informal Lunch  –  Saturday 31st August at the Westberry Hotel, Bodmin, 11am-3pm. There is no charge for the day and you can claim a contribution to your travel costs. It helps us to know how many people are likely to attend, as we
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Alpha-1 Alliance Statement

The Alpha-1 Alliance is campaigning for the establishment of a highly specialised service for Alpha-1 patients.   As future patient access to a licensed augmentation therapy will be an integral part of this service, we warmly welcome the augmentation
Read More

Monica Fletcher OBE

European Lung Foundation Chair, Monica Fletcher, is to be made an Officer of the Order of the British Empire (OBE) from the Queen’s Birthday List, for her services to nursing and nurse education in the UK. At the recent 50th Anniversary Info Day in B
Read More

Great River Race

Alpha-1 Awareness is supporting the Great River Race.  Two teams of rowers competing in the event will be wearing our livery to raise awareness of the genetic condition.  The six-oar boats are Thames Waterman’s Cutters most of which are owned b
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New Board Members

For many years Andi and Jackie Osborn have come to Alpha-1 Awareness meetings and they have helped raise money for the charity.  It gives us great pleasure to announce that now they have agreed to join the Board of the charity.  Their opinions and pr
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RAPID Trial Results Announced

Treatment with augmentation therapy is effective in slowing the progression of emphysema in patients with alpha-1 antitrypsin deficiency (AATD), according to a new study presented at the 2013 American Thoracic Society International Conference in Phil
Read More

Alpha-1 Awareness UK online charity shop officially launched

Fantastic News! Our brand new Alpha-1 Awareness UK online shop www.alpha1shop.org.uk is now officially up and running! We’ve a range of fantastic products that will help to raise money for the charity and enable us to keep fighting for Alphas i
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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.