The Alpha-1 UK Support Group is a not for profit organisation founded in 1997 by those diagnosed with the genetic condition Alpha-1 Antitrypsin Deficiency dedicated to help, advise and support fellow sufferers, their families, carers and friends.
We are a registered Charity in England and Wales (1146330) Scotland (SC043177)
Charity Trustees/Committee
Karen O’Hara – Chairman / Trustee / Treasurer
Dr Sandra Nestler-Parr – Trustee / Strategy and External Relations
Tanya Jones – Trustee / Social Media & Data Protection Officer
Jemma Coad – Trustee / Parent Support / Fundraising and Awareness Co-ordinator
Julie Dore – Committee Member / Fundraising and Awareness Co-Ordinator
Melanie Brolly – Committee Member / Fundraising and Awareness Co-ordinator
Mission Statement
- To provide support and education for patients, families, carers and friends who are affected directly or indirectly by Alpha-1 Antitrypsin Deficiency.
- To grow a social network for patients, by providing discussion groups focusing on how better to cope with their condition, aiming towards improving quality of life.
- To advance education, understanding and awareness of the condition, in particular among medical professionals, including information relating to genetic implications, treatment, and lifestyle choices.
- To support research and campaign for better access to treatment for Alpha-1 patients.
Patrons
Robert A. Stockley MD, D.Sc ., F.R.C.P., F.E.R.S.
Professor in Medicine and Chair of the ERS Strategy on AATD
Professor Stockley has a long-standing interest in chronic obstructive pulmonary disease (COPD) with particular reference to airway inflammation, proteinases and anti-proteinases, and especially the role of the neutrophils, bacteria and exacerbations. He acts as advisor to many pharmaceutical companies on the design and delivery of phase 2 and 3 clinical trials, and has been principal investigator for several large multinational trials in COPD. Professor Stockley organizes the UK alpha-1-antitrypsin deficiency database and established the international registry for the deficiency. He is currently coordinating multicentre trials of augmentation therapy and alveolar regeneration in patients with this deficiency. Since 1981, he has run a specialist clinic for patients with bronchiectasis, and has a special interest in bacterial colonization and bacterial load related to inflammation. Professor Stockley has published more than 400 peer-reviewed papers.
Professor William MacNee MBChB MD FRCP(G) FRCP(E)
William MacNee is Professor of Respiratory and Environmental Medicine at the University of Edinburgh and Honorary Consultant Physician at NHS Lothian Scotland. He held the Chair of the Scientific Committee of the European Respiratory Society (ERS) and also the ERS Presidency. He has served on the British Thoracic Society COPD guideline committee and was co-chair of the ERS/ATS COPD guidelines committee. He is currently establishing a comprehensive database of Alpha-1 patients in Scotland and is conducting a clinical study on an inhaled Alpha-1 intervention. Professor MacNee is leading the Alpha-1 Alliance’s campaign in Scotland.