Flora Women's Mini Marathon 2009

The Flora Women's Mini Marathon takes place on Monday 1st June 2009. This is a unique opportunity for Alphas and their families in alliance with the Patient Support Group and the Alpha One Foundation to raise funds for research and increased awareness into alpha-1 antitrypsin deficiency (Alpha-1).

This year we are raising funds for equipment used in our research laboratory. This vital piece of equipment costs €10,000. Sponsorship cards and T-shirts are available from the Alpha One Foundation at 01-8093871 or www.florawomensminimarathon.ie. Members of the Patient Support Group and Alpha One Foundation are participating in the event, meaning patients can raise funds by collecting money on behalf of these participants. We understand many patients may not be able to take part in this event themselves. For further details contact Kitty on 01-8093871 or log on to www.florawomensminimarathon.ie.

Alpha-1 can cause life threatening conditions in both adults and children. It is estimated that 3,000 people on the island of Ireland have Alpha-1 which is either undiagnosed or misdiagnosed as something else e.g. COPD or asthma. Our research demonstrates a much higher incidence of Alpha-1 on the island of Ireland than previously thought, with an estimated 3,000 individuals at risk of developing this severe disease. Alpha-1 individuals identified as a result of family screening have significantly increased lung function when compared to Alphas identified by targeted symptomatic screening. Our results emphasize the need for increased awareness and early detection of asymptomatic Alpha-1. Identification of patients from a targeted detection programme includes thorough family screening and this allows the initiation of preventative measures before significant lung disease has occurred. 

Prof Gerry McElvaney, Prof of Medicine, RCSI and Beaumont Hospital states “our research and experience with Alpha-1 patients and other respiratory diseases, point to the fact that there is a great need for a National Respiratory Strategy to co-ordinate the proper diagnosis and treatment of Alpha-1 and other respiratory conditions. Our studies clearly show it is vital for the health and welfare of our patients that they are diagnosed as early as possible, before they develop symptoms.”

Alpha One Foundation supports the Irish Donor Network - Always carry a Donor Card.

Patient Report from 3rd Alfa Europe Alliance Meeting 2008

An Irish Alpha-1 patient Orla Keane had the opportunity to attend the 3rd Alfa Europe Alliance Meeting in Prague from May 9th to 10th.

Irish Delegate Report from the Third Alfa Europe Meeting, May 2008

Agenda
Dr. Thomas Köhnlein MD, Hannover Medical School
Ongoing researches into alpha1-antirypsin deficiency
Dr. Pawel Kuca MD, National TB and Lung Diseases Research Institute,
Epidemiology and detection program in Poland MU
Dr. Jan Chlumský Ph.D., Department of Pneumonology, Thomayer Teaching Hospital, Prague
Situation of alpha-1 patients in the Czech Republic
Klaus Schäfer, Talecris Biotherapeutics GmbH
Replacement therapy and Europe

Topics
1. Lung rehabilitation
2. Access to therapies
3. Access to insurance, mortgage, pension
4. Genetic discrimination within Europe

All delegates gathered at the Hotel Don Giovanni on the afternoon of Friday 9th May. We were welcomed to Prague by the Federation President, Larry Warren CEO of the Alpha One Foundation Ireland and Silke Horakava from the Czech Alpha Group who were our hosts for the Conference. The AGM, initially consisted of voting and legal formalities, Larry Warren presented his President’s Report; in this he outlined events of the Conference in Rome last year.  

    * The alliance of the Alfa Europe Federation & the European Alpha-1 Foundation, has given the Federation a more stable footing and financial backing to run the Organisation and develop
    * The Federation membership is growing, with France and the Czech Republic joining this year and Poland, UK, Scotland and Portugal soon to be joining
    * It is important that The Federation is recognised by the EU Commission as a patient support partner, in order that Alpha Europe becomes recognised in the EU, this will eventually be for the benefit of all Alpha patients and their families
    * Larry Warren reported that the Federation already
          o Is a member of the Plasma and Protein Users group, which meets 4 times a year to look at the supply of produce etc
          o Has been accepted as a member of EURORDIS, the European Alliance for patients with rare diseases
          o Has applied for membership of EPPOSI, which is an alliance of patient groups, science and industry
          o Intends to build a working relationship with AIR, the Alpha-1 International Registry.
          o The above will ensure that the Federation is part of the planning for therapies, registries or any other matters that will affect Alpha sufferers
    * This year France has the EU Presidency and they have already given notice to the Federation that the French Government wishes to raise the profile of rare diseases (such as Alpha-1) in the EU and look at how they are tackled and will hopefully draw up directives and recommendations to the Parliament and Commission, these will then be passed down to National Governments
    * In order to raise the awareness of Alpha-1 within the EU, delegates were asked to take back to their various groups and associations a request that Alpha patients right to their local MEPs telling them about Alpha-1 as an illness, how it affects them personally and their families lives and the problems they encounter with receiving treatments, therapies and reimbursements.

Nuccia Gatta, who has been Vice President and last year hosted the Rome Conference, explained how Italy along with Holland and Germany, have been doing the PAAIR (a collaboration between Patient Associations - PA - and the Alpha-1 International Registry - AIR), this will give the EU an example of how individuals involved in a rare disease can organise themselves to improve the diagnosis, care and treatment of a disease and the impact this has on patient care. We next went on to the Treasurers report, given by Juergen Schultz, explained that the Federation now had finance coming in from the Foundation, this apart from the 50euros membership fee paid by each member country, is, at present, the Federation’s main source of income. Conferences are funded by the Foundation, although the World Conference in Rome was funded by outside organisation. After discussion of the reports, the meeting moved on to electing officers

    * President - Larry Warren
    * Vice President - Sandrine Lefrancois (nominated from the floor, Nuccia Gatta stood down)
    * Treasurer -  Juergen Schultz
    * Auditor - Elke Sadtler-Lison

By Orla Keane,
May 2008.