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.

 

News

We have a separate site at www.alpha1.news which reports on all Alpha-1 related news from around the world.  If you would like to learn what is happening with Treatments, Research, Alpha-1 Mentions in the press, Other World group’s news and our own charity news, then you need to take a look at our news website.


Alpha-1 in the time of COVID-19

We understand that this is a very concerning time for Alpha’s, and we’re here to provide you as much information and support as we have within a rapidly changing context. To find out more about coronavirus and Alpha-1 antitrypsin deficiency, please visit our page here. We strive to update this page as often as we can, given evolving developments and advice, so please check back frequently.

“MERS Coronavirus Particles” by National Institutes of Health (NIH) is licensed under CC BY-NC 2.0 

18th May 2020 – If you are a parent, you are probably concerned over the recent announcement from the government about re-opening the schools.  Should your child go back now?  Sadly nobody is able to give you a Yes or No answer.  You may find a small article we have titled “A Personal View of a Teacher and Mum about reopening of schools and Alpha” which was written by one of our Trustees useful.


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 Sadly the event has been postponed.  If you are interested in the race, please let us know now so that we can notify you as soon as we have been told the new date.

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

 

New Board members to our charity

Alpha-1 Awareness is a charity founded and run by volunteers to help bring awareness of AATD as well as give support to those affected, their families, friends and carers.  We can’t do this alone, and we are so thankful to those who help in our Faceb
Read More

AlphaNet Announces New Appointment to the Board of Directors

AlphaNet is pleased to announce the appointment of Dell Witcher to the board of directors, effective May 14, 2020. “Dell’s expertise and involvement in our board will greatly benefit the Alpha-1 community.” “We are excited to welcome Dell to AlphaNet
Read More

Arrowhead Pharmaceuticals: Pushing the Boundaries of Gene Silencing

RNA interference (RNAi), sometimes called gene silencing, is an approach to therapeutics in certain diseases that are caused by the production of abnormal proteins or an overproduction of proteins, which can be treated by turning off or silencing the
Read More

‘Grey’s Anatomy’ TV Show’s episode about Alpha-1

[Warning: The below contains MAJOR spoilers for Season 16, Episode 15 of Grey’s Anatomy, “Snowblind.”] The blizzard isn’t the only disaster in this Grey’s Anatomy episode—Season 16, Episode 15 Hayes’ patient this week is Elisa, a 6-year-old with alph
Read More

Alpha-1 Awareness donate £10,000 to the research of a cure

On Monday 3rd February 2020, Alan and Emma Wooler of Alpha-1 Awareness went to UCL (University College London) to see Professor David Lomas, and presented him with a cheque for £10,000 to go towards his research of a cure for Alpha-1.   Alan Woo
Read More

Researchers build a better lung model

30th January 2020   (Boston)–Using a combination of pluripotent stem cells (cells that can potentially produce any cell or tissue type) and machine learning (artificial intelligence that allows computers to learn automatically), researcher
Read More

Danish Medicines Council Grants Approval for CSL Behring’s Respreeza as Standard Treatment for Severe Alpha-1 Antitrypsin Deficiency Patients

HATTERSHEIM AM MAIN, Germany, Jan. 24, 2020 /PRNewswire/ — Global biotherapeutics leader CSL Behring today announced that the Danish Medicines Council has published its final decision, approving human Alpha 1 Antitrypsin  (AAT) therapy and Resp
Read More

Dicerna™ Receives Orphan Drug Designation From European Commission for DCR-A1AT for Treatment of Congenital Alpha-1 Antitrypsin Deficiency

LEXINGTON, Mass.–(BUSINESS WIRE)–Dec. 17, 2019– Dicerna™ Pharmaceuticals, Inc. (Nasdaq: DRNA) (the “Company” or “Dicerna”), a leading developer of investigational ribonucleic acid interference (RNAi) therapeutics, today annou
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.