To commemorate the 50th anniversary of the discovery of Alpha-1 Antitrypsin Deficiency by Carl-Bertil Laurell and Sten Eriksson in 1963, Alpha-1 communities from around the world will take part in two major events in Barcelona, Spain.
Date: 12th -13th April 2013
Venue: Hilton Diagonal Mar Hotel, Barcelona, Spain
Organiser: Alpha-1 Foundation
26 Mile Marathon Fundraising Swim raises money for Alpha-1 UK Support Group Charity
Congratulations and a big THANK YOU to Marianne Mullen for completing her Marathon fundraising swim.
Here is what Marianne had to say:
“I’VE DONE IT AT LAST!!! 🙂 I’ve Completed my 26 mile swim and survived! Thank you for taking the time to look at my JustGiving page and for all your generous donations. It has been a good journey with lots of kind encouragement. I really have appreciated your support and your generous funds will play a big part in helping raise awareness and finding medical solutions to this condition for future generations. You have all helped to make a difference.
Thank you x :)”
“As an ex international springboard & highboard diver I have led a very active lifestyle, so it was a big shock to discover that I should be affected by a condition such as this. Whilst I am still relatively fit (!), my intention was to complete a marathon swim over the summer months (26 miles in total). Without the Alpha 1 support group and ADAPT programme there would be no support structure or monitoring of this condition in the UK. Through their tireless campaigning, more is being found out about this genetic condition, and more GPs are becoming aware of it. The Alpha 1 support group relies on the generous donations of
20th September, 2012
Kenilworth Half Marathon 2012
Congratulations and a big THANK YOU to Becky for completing her Half Marathon at Kenilworth and raising funds for Alpha-1 UK Support Group Charity.
25th September 2012
E-PETITION PLEASE SIGN / Alpha-1 Alliance (UK) launches e-petition to the Department of Health calling on the Government to nationally commission a specialised service for Alpha-1 so that patients can get the vital treatment and support they need.
The Alpha-1 Alliance’s campaign for a nationally commissioned specialised service for Alpha-1 antitrypsin deficiency, including access to augmentation therapy, is now well under way. The Alpha-1 Alliance brings together key Alpha-1 patient groups and clinicians to campaign for better services and treatment for Alpha-1 patients. The Alliance includes the Alpha-1 UK Support Group, Alpha-1 Awareness UK and Alpha-1 Advocacy and Action and is chaired by Dr Ravi Mahadeva, representing the clinical community.
The Alliance is in the process of securing meetings with key officials at the Department of Health as well as meeting with Members of Parliament to raise awareness of the needs of Alpha-1 patients. We’ve also just launched an online petition to the Department of Health calling on the Government to nationally commission a specialised service for Alpha-1 so that patients can get the vital treatment and support they need. It’s really important that we get as many signatures as possible to demonstrate the strength of feeling about the need for specialised Alpha-1 services and we need your help to make this happen.
Please show your support for the campaign by signing our e-petition, then spread the word by forwarding the petition to friends, family and work colleagues. Don’t forget to post the petition on Facebook and Twitter too, if you use them. We currently need to reach 5,000 signatures in order to make it into the top 10 petitions to the Department of Health, and if we can get 100,000 signatures the petition has the chance to be debated in Parliament.
You have to be a British Citizen or normally live in the UK in order to be able to sign the petition. So, British Citizens living abroad would be able to sign the petition and it would count (which is why the petition provides a ‘Country’ drop down menu).
To sign Petition>>>> Click Here
5th October 2012