Palazzo De Piro in Mdina housed for many years St Dorothy's Convent, a school for girls. Several years ago the Dorotheans moved to purpose-built premises and Palazzo de Piro has been transformed into an events venue, a café etc. and is also an extension of the Mdina Cathedral Museum in the vicinity.
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The indefatigable Mrs Michelle Muscat needs no introduction. She is President of the National Alliance for Rare Diseases Support (Malta) and Chairperson of the Marigold Foundation and together with her team organized the annual fundraising dinner which took place last month. The guest of honour was Sean Hepburn Ferrer whose parents are the still loved Audrey Hepburn and the actor Mel Ferrer. Mr Hepburn Ferrer is ambassador of EURORDIS which is the voice of rare disease patients in Europe and beyond. He is an accomplished film director and humanitarian much in line with his mother's legacy. His mother Audrey died of a rare cancer hence his interest in this cause.
Mr Hepburn came to Malta for the first time last year to the annual fundraising dinner.
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What exactly does the National Alliance for rare diseases do? As both Mrs Muscat and Mr Hepburn Ferrer mentioned in their speeches during dinner that apart from providing support and information to suffers and their family members the Alliance also helps raise awareness and encourages further research. 'How do we ensure small populations can access affordable innovations,' Mr Hepburn Ferrer, asked. Both speakers pointed out that in Malta there are around 600 different rare diseases. In fact Mrs Muscat's mother died of a rare disease hence her interest in helping others to cope. She told us: 'People suffering from rare diseases face many adversities chief among them is that it takes time before a full diagnosis is made. Because the disease is rare in many cases there may be no cure available at present. Often there is no medication as yet invented for so many of these diseases and when it is available it is often expensive and unaffordable. By joining forces, research organizations can combine their efforts and hopefully come up with a cure for the various diseases.'
Looking very elegant in a long beige and black dress, Mrs Muscat noted that there are already a number of entities in Malta working with people with rare diseases. In this regard, the National Alliance will play a central role in helping these organizations to provide a network for patients to get the necessary support to lead as comfortable a life as possible. Mrs Muscat assured them that the Alliance will do its utmost to offer them its support.
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As we have seen recently The Marigold Foundation offered a substantial sum of money to the ASL sufferer and brave fundraiser Bjorn Formosa whose dream is to build a well equipped community home for ASL sufferers and it looks as if his dream is going to soon become reality.
How is it possible not to be moved and also impressed by those who voluntarily work towards making life a little better to unfortunate sufferers. This was such an evening - of goodwill and generosity.
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I must not forget to mention that also present was Ms Simona Belli Gambi, Eurordis Board member who also gave a short, moving speech saying she became interested in rare diseases when it was discovered that one of her nieces was a victim of such a disease.
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This was a well organized and entertaining evening. On arrival we had cocktails followed by a visit to the Tools, Trades and Traditions Museum which is in the crypt of the Palazzo. There beautiful models were scattered wearing Charles and Ron vintage black dresses. And so on to dinner. I was placed on a very interesting table with among others the young lawyer Alaister Degaetano who told me he sits on the committee of the Alliance. Also there, as last year, was Dr Pace (whose father was Prof. Leslie Pace) who I believe is a head and neck specialist - only the very bright can do these delicate operations I am told by those who know. His wife is in the dental profession. The Rector of the University and Mrs Vella, Prof Alex Felice and Mrs Felice were there too. Prof. Felice is doing some interesting research and I promised to go and have a look one of these days. I remember him and his brother at the University of Malta as 18-year-olds. Prof. Godfrey Laferla, head of Surgery and I believe Dean too, made my evening an interesting one. A serious man he was nevertheless quietly amusing and informative. There I was surrounded by so many clever people. Dr Abela Medici the forensic expert and also author of at least two books and Mrs Abela Medici further livened the evening. Wilfred Kenely is an old colleague as years ago he worked at the Independent, too. He is lately fundraising for research at the University of Malta.
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There was a fashion show, dancing by the Yada Dance Company, gifts for each woman present and generous prizes for those who bought raffle tickets.
The Xara Palace which does the catering for Palazzo De Piro did not disappoint when it came to food. In fact each course was delicious and beautifully presented.
An evening like this is impossible without sponsors and the help of a hardworking team in this case led by Jennifer Xuereb, secretary of the Marigold Foundation.
The Maltese are generous and I am told that tickets for this dinner went in a flash and some unhappily had to be turned away. Well, better luck next time. Like the Heart Foundation dinner this is a fund raiser worth helping. It is the least we can do for all those unlucky enough to suffer some rare disease.
How brave one has to be to carry on!
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