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
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.
We would like to thank all those that raise money for us, without you, we would not have a charity.
Please help the below people by reading their stories 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.
James Balson ~ Amsterdam Half Marathon ~ 15th October 2017
|James is running in his first half marathon to support his brother:
“Up until last year I had never even heard of A1AD, I am sure that not many of you have. Keeping things short, its something that has hit too close to home for me to ignore that it exists. So, if I can do anything to help raise awareness, at the same time some much needed cash, then I am more than willing to push myself as far as I can, to help others who cannot push so hard.
In 5 weeks I will be running the Amsterdam Half Marathon, its my first half marathon, and my first charity run, of many more to come.
Help support others less fortunate, by supporting me run 21km (13 miles).”
You can find his JustGiving page here: www.justgiving.com/fundraising/james-balson
James wasn’t be alone as our very own Cori will also be there running in the race. It is hoped that they can meet up at the beginning before the race starts.
James completed the race loving it so much he signed up for the Prague Half Marathon in 2018 (see his new Just Giving page below). You can see photos of the race here.
Katie Rigny ~ Kernow Destroyer ~ 28th October 2017
|Katie and friends are doing a very hard assault course in aid of the good friend Faith Toogood. This is no easy task due to the obstacles they put in your way trying to get you to stop. In the event organizers own words “PAIN IS ONLY TEMPORARY, FINISHING IS EVERYTHING!“.
Basically it’s a very muddy gruelling event. Just what a bunch of middle aged women with limited fitness should do, we thought, and signed up right away. Except Millie, our fitness guru, who will take it in her stride and probably have to carry us all round the course!
We are supporting the Alpha1 Awareness UK Charity as this charity is close to all our hearts, as the gorgeous Coco and her family – our close friends Faith and Charlie from our local community – live and deal with Alpha 1 on a daily basis. A genetic condition, Alpha 1 antitrypsin deficiency affects the lungs and liver. The charity supports families affected and funds research into the condition.
You can find her JustGiving page here: www.justgiving.com/fundraising/katie-rigby6
More information on the event itself can be found here: www.kernowkiller.co.uk/about-us
Katie and her friends have completed the event & their page can be found here.
Below are events to come
James Balson ~ Prague Half Marathon ~ 7th April 2018
|James is running his second race on behalf of our charity. This time the Prague Half Marathon with his sister Louise.
You can find his JustGiving page here: https://www.justgiving.com/fundraising/james-balson1
Louise Balson ~ Prague Half Marathon ~ 7th April 2018
|Lou is running her first half marathon with her brother James. It will be at the Prague Half Marathon.
“In just over 6 months I will be running the Prague Half Marathon with my biggest brother Jamie. It’s my first half marathon, and first time running a race since my school cross country days (bare in mind that was over 20 years ago!). I’ve never trained for a race. I run a handful of times a year, when I can be bothered, and it’s only ever 3-4 miles MAX, so a smidgen of a half marathon. This won’t be an easy task for me, despite what people may think of my fitness. I am not, and never have been, a runner. My family will vouch for that!
Help support me and others less fortunate by donating what you can, and providing me with encouragement … I’m gonna need it! “
You can find her JustGiving page here: www.justgiving.com/fundraising/louise-balson
Danni Leadbetter ~ Skydive ~ Spring/Summer 2018
|Danni is doing something amazing for our charity, her first ever skydive.
“Thanks for taking the time to visit my JustGiving page.
I am completing a skydive to mark my 21st Birthday, and I am looking to do this in Spring/Summer 2018. I thought this would be the perfect time to fundraise for a cause that is very close to my heart.
I am a carrier for Alpha 1, and my brother has Alpha 1, of which this effects him greatly. Alpha 1 is a genetic condition that not many people know about and can cause serious health problems. By fundraising for Alpha 1, more research can be completed and awareness can be raised to help people with this widely unknown genetic condition.”
You can find her JustGiving page here: www.justgiving.com/fundraising/danni-leadbetter
Matt Rowley ~ The Race Across Scotland 2018 ~ 18th – 22nd August 2018
|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://www.gbultras.com/ultra-great-britain-2018/
You can find his JustGiving page here: https://www.justgiving.com/fundraising/Running200Alpha1
Paul is doing running events all through the year, you can see some photos that he has sent us here on his page.
Alan & Emma Wooler ~ 25k TrekFest ~ 1st September 2018
|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.
“You can find their JustGiving page here: www.justgiving.com/fundraising/alphawooler
Their team page can be found here: www.justgiving.com/teams/alphatrek