Marion remembered at international conference

Members of the late Marion Kelly's family recently attended the Alpha 1 Foundation's International Conference in Dubrovnik.

Marion (53), of Puckane and Nenagh, died last June. She had been suffering from Alpha-1 antitrypsin deficiency, a rare condition affecting the lungs and liver, for which she had been taking the trial drug Respreeza for 11 years. She was one of 21 patients on the trial, for whom access to the drug was discontinued the previous October. Tragically, she died  just days after she began a campaign for the drug to be made available again.

The Dubrovnik event was attended by delegations from all over the world. Members of the Kelly family were invited in recognition of Marion's appeal and the important legacy she has left in Ireland. The other trial patient that died, Anna Cassidy of Donegal, was also honoured at the conference.

Marion started the campaign and, after her death, the Kelly family continued the fight, which resulted in Respreeza being reinstated for the other 19 patients who had been on it.

The family would like to take this opportunity to thank everyone in the community who supported Marion and her campaign. A special word of thanks to local TD Alan Kelly and to Eugene Hogan of Bridge PR for the work that they did.