Alpha-1 Antitrypsin Deficiency Support from Alpha 1 Awareness UK


Welcome to Alpha-1 Awareness UK

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 are. 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.


Fund raisers

We would like to thank all those that raise money for us, without you, we would not have a charity.
We currently have 5 people who are doing sponsored activities for us, each of them have setup Just Giving pages. Please help them by reading their story and about what they are doing, if you are able, please make a donation.

The fundraisers below have been put into order of date of their events.

 

Paul Amos ~ Tandem Skydive ~ 14th May 2017

Paul Amos last year did a tandem skydive and loved it so much he wanted to do it again this year. He thought it would be a great idea to use it to help raise funds for our charity. In Paul’s own words:

“I’d like to raise as much money as possible to help a small but much needed charity. A good friend of mine recently had a bouncing baby boy and soon discovered that baby Denton has Alfa one Antitrypsin deficiency which affects his liver, this could result in a liver transplant in early childhood. The charity have been fantastic, they provide emotional, financial and medical support and guidance for parents and sufferers of this condition.”

 

Please help support Paul by going to his JustGiving page and donating some money, let’s show him some support: https://www.justgiving.com/fundraising/PaulSpencer-Amos


Paul has now completed his Jump and it was a perfect day. As of the 15th May, Paul has raised £1,201 (including Gift Aid) with some offline donations still to be counted.
You can see photos of the skydive here.

 

 

Cori Ruktanonchai ~ Stockholm Marathon ~  3rd June 2017

Nick and I are running the Stockholm Marathon in June. It’s going to be our first marathon and we need all the support we can get. Before you consider dismissing us as completely insane (which we are!), we’re running to raise awareness for a rare, progressive genetic condition called Alpha-1 Antitrypsin Deficiency, which affects the lungs and liver. In August 2016, I was diagnosed with this condition, which very often presents symptoms as breathing problems while exercising. After research and many doctor’s visits, the symptoms are now under control. This wouldn’t have been possible, though, without advocacy and awareness, primarily through the charity, Alpha 1 Awareness UK (www.alpha1awareness.org.uk), where I am now serving as a board member.

By crossing that finish line together, we hope to inspire those who are currently affected that this condition doesn’t have to stop you from doing what you love. Onwards and upwards!

Cori’s Just Giving page can be found here: https://www.justgiving.com/fundraising/Cori-and-Nick-Ruk

 

 

Paul Seager ~ 45 fells climb Covering 70 miles of Cumbrian Fells  ~  17th June 2017

Paul Seagger with friends Craig Benson and Steven McGrady plan to do a lot of walking and climbing in Cumbria for us.
“My son Jack was born with Alpha 1 Antitrypsin Deficiency so on Saturday 17th June 2017 at 0443 I will set off with two friends, Craig Benson and Steven McGrady and we will attempt to climb 45 fells covering roughly 70 miles of Cumbrian Fells none stop. Our aim is to do it in under 48 hours and raise awareness of Alpha 1, raising as much money as possible along the way.”Please visit Paul’s Just Giving page to help support him. Even if you can only donate £1, it will all help fight: www.justgiving.com/fundraising/fell45 

Paul has sent us some photos that he and his team have taken during their training on the Fells. Click here to see the photos. Paul’s team will be sending us photos during the event which we will put on the page as we get them, so come back on 17th June to see them as we get them.

 

 

Anita Cousins ~ Torbay Half marathon  ~  25th June 2017

Anita Cousins is running a half marathon for us to help raise awareness.
“For many of my friends you’ll have absolutely no idea what this means and no idea how lucky you are that you have never heard of it.. It is a very rare genetic condition that our special boy has to cope with daily.. So rare that our own doctor had to go on a course to learn how to manage Tysons condition.Tyson is a high risk of Emphysema by the age of 20, his lungs and liver have limited protection which means just walking past ciggerette smoke causes him to have an asthma attack.. So rare that there is not enough awareness or money to put towards finding treatment and certainly no cure.. I write this with tears streaming down my face because through all the smiles It breaks my heart knowing what we all have to face this…Funding is key to learning and understanding about this horrible condition. If you would like to donate please do.. If I can give up wine for a few weeks I’m sure you can give up a few pounds. Thank you so much 😘”Please visit Anita’s Just Giving page to help support her. Even if you can only donate £1, it will all help fight: https://www.justgiving.com/fundraising/Anita-Cousins3

 

 

Matt Rowley ~ Running 200 miles across Great Britain ~  19th – 23rd August 2017

Matt Rowley is doing something amazing for Alpha’s. In his words:

” I am running 200 miles across Great Britain to help raise money and awareness for the charity Alpha 1 Awareness UK and the condition alpha-1 antitrypsin deficiency.

My Mum has AATD and as a result has had two lung reduction operations to help her breath more easily and to give her a better quality of life. Without others in the past supporting research for AATD I doubt she would be with us today.”

Race Details: http://cluster4.website-staging.uk/gbultras.com/ultra-great-britain-200

You can find his JustGiving page here: https://www.justgiving.com/fundraising/Running200Alpha1

 

 

Sharon Simpson ~ 25k walk in the Peak District ~  2nd September 2017

Sharon is putting her feet to a challenge:

“I met my husband when he was in his early 40’s when he was fit and healthy and playing football twice a week. He was diagnosed with Alpha 1 when he was 48 and by the time we married just 2 years later he was already struggling with his breathing. Just 9 years later he was on oxygen most of the day and a double lung transplant was his only chance of survival. In December 2013 he received the gift of life from a wonderful organ donor and now we are making the most of every day we have as a couple and with our family.

We have already raised funds for the Freeman Heart and Lung Transplant Association and now want to raise money for the Alpha 1 awareness charity so that more research can be carried out to find a cure for this condition and save many lives.

Walk Details are here : www.trekfest.org.uk/the-peaks/

You can find her JustGiving page here: www.justgiving.com/fundraising/Sharon-Simpson19

 

British 10K Run

We once again secured 6 places in the British 10K Run to be held on Sunday 9th July 2017. Five of the places have been filled, so we still have just 1 place left. Can any of your family or friends take those places and run to raise money for our charity and raise the profile of Alpha-1 Antitrypsin Deficiency. It is a great day and it is lovely seeing all the runners supporting Charities close to their hearts. What is even better is seeing the delighted smiles of the runners as they finish the run and get their competitors medals – it gives a huge sense of achievement as many of our previous runners will confirm.

To take part in the run, please email us at info@alpha1awarness.org.uk or let us know by using our Contact Us page. We will provide a running top for your training and for the day and some of our information leaflets for you to give to potential sponsors. One of our Board members will be assigned to personally support you and we will even pay for your ticket to enter the race.

In Virgin Sport’s own words:

Run 10k through the iconic British 10K is the fastest way to tour central London’s famous landmarks from Piccadilly to Whitehall with a route that races past Regent Street, Trafalgar Square, the Embankment, Westminster Bridge and Westminster Abbey.  With free race photos, a t-shirt, medal, and tote bag, festival activities and more.

Please help us fill all 6 places, it is a great day and a wonderful way to show your support for our charity and a great way to help those that need our support.

To find out more detailed information on the run, click here.

 

Our Runners

Sophie Goodwin

“I am running the Virgin British 10K in London for Alpha 1 Awareness UK because a good friend at work has a son with A1.

You can find her JustGiving page here: www.justgiving.com/fundraising/SG5

Rachel Wilson

“I am running this race to help raise money for Alpha-1. This is a charity that a colleague of mine, Alan, holds close to his heart. After reading his story I thought it would be a great cause to support.

You can find her JustGiving page here: www.justgiving.com/fundraising/Rachel-Wilson53

 

 

Donate with JustGiving


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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.