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

Sadly due to COVID-19 we are postponing our planned 2020 Information Day and are moving it to 2021 to keep our members safe.  We cannot in good conscious put anybody at risk.
Our AGM is still booked for the same date and time, we will though be moving it to a telephone conference call.  If you would like to join us, click here to let us know.

 

Our 2021 AGM will be on Saturday 11th September at the Holiday Inn Birmingham M6, Jct. 7 & Our Information Day will be on Sunday 12th September at the same venue.
Please click on the below AGM button 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.

Our Info Day is a great way 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 until 2021.  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 2021

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 18th September 2021

Sadly Global Adventures has cancelled the 2020 event due to COVID-19.

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

 

Dicerna™ to Begin Clinical Development of DCR-A1AT for Treatment of Patients with Alpha-1 Antitrypsin Deficiency-Associated Liver Disease

2nd July 2019 CAMBRIDGE, Mass.–(BUSINESS WIRE)–Jul. 2, 2019– DicernaTMPharmaceuticals, Inc. (Nasdaq: DRNA) (the “Company” or “Dicerna”), a leading developer of ribonucleic acid interference (RNAi) therapies, today announced it submi
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All UK sites now open for new drug trial (Astraeus Study) to explore oral compound for Alpha-1 lung disease

All UK sites now open for new drug trial (Astraeus Study) to explore oral compound for Alpha-1 lung disease 8 clinical trial sites now open across the UK for ASTRAEUS Study Alpha-1 Awareness and Alpha-1 UK Support Group are pleased to note that all e
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Arrowhead Preclinical Data Demonstrates RNAi Therapy Prevents and Reverses Alpha-1 Liver Disease at The International Liver Congress

Apr 12, 2019 PASADENA, Calif. –(BUSINESS WIRE)–Apr. 12, 2019– Arrowhead Pharmaceuticals Inc. (NASDAQ: ARWR) today presented preclinical data at The International Liver Congress™ 2019 (ILC), the annual meeting of the European
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Danish Researchers found a way to Produce Life-Saving Human Protein in CHO Cells for the Treatment of a Genetic Disorder

28th March 2019   Researchers from Technical University of Denmark have produced CHO or mammalian cell lines which can produce 1, 2 g/L recombinant Alpha-1-antitrypsin protein. This breakthrough research can lead to better treatment of Alpha-, a
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The sad passing of Dawn Haywood- Jones

21st March 2019 It is with great sadness that we have to write about the sad passing of Dawn Haywood- Jones. Dawn along with 3 other people started Alpha-1 Awareness in 2008 in the hope that they could reach out to fellow sufferers and to educate the
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UK trial sites open for ASTRAEUS Study into Alpha-1 Antitrypsin Lung Disease

Alpha-1 Awareness & Alpha-1 UK Support Group are very pleased to announce exciting news about a new drug trial for the UK A clinical research trial of a potential new therapy for adults affected by Alpha-1 Antitrypsin-related lung disease has ope
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Alpha-1 Awareness donates £10,000 to the research of a cure

27th February 2019 Alpha-1 Awareness is dedicated to contributing a minimum of 10% of its funds raised towards research to find a cure for this condition. In 2018, we went above and beyond this target, donating £25,000 to the patron of the Charity, P
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Alpha-1 Awareness visits Mereo BioPharma

On Monday 17th December we went to see Mereo BioPharma at their office in London. Mereo BioPharma have recently started dosing in their Phase 2 clinical trial for MPH-966 (alvelestat). The study will recruit in America, Canada, Europe and the UK. The
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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.