Mrs Michelle Muscat continues to develop the work she started a few years ago as wife of former Premier Joseph Muscat: The Marigold Foundation and the Rare Diseases Alliances.  So, since Rare Disease Day is celebrated in February worldwide, she together with her team organized a number of events and initiatives, among them a fundraising car wash. But let me tell you what else.

A pilot project to screen newborns for rare diseases was also launched and is to be funded by The Marigold Foundation and the Rare Diseases Alliance.

Furthermore a Rare Disease Seminar was held under the patronage of President Dr George Vella.

Last but not least a Rare Pearl Soirée at the Casino Maltese on Rare Disease Day which falls on 29 February was held.

This was a most enjoyable event with a couple of energetic dancing troops entertaining diners and singing by popular singers. The ballroom of the Casino Maltese was full to the brim and so was the adjoining room.

We all wore black and purple rosettes designed by stylist James Dimech and made by members of the Alliance, for the occasion.

I was touched to see that a group of Downs Syndrome children, boys and girls, smartly dressed, were present. Someone had volunteered to pay for them.

The table settings were perfect - Mrs Muscat went to check every single table in the afternoon I was told - and the food excellent.

Perhaps the highlight of the evening was the short but significant awards  ceremony.

Mrs Muscat went up to the table of each awardee and told us something about them as she presented the award.

Amanda and Manual Degabriele who lost a baby son with a rare disease, were awarded, as, in spite of their sorrow have remained loyal members of the Alliance helping those struggling with disease.

Professor Joseph Borg also won an award for his special interest in the members of the Alliance and his continuous support and encouragement to enroll rare disease patients in research projects. He believes that focusing his research on rare disorders can lead to successfully tackle the more common and complex disorders. 

Another awardee was Dr Alistair de Gaetano for his contribution as an RDM executive board member and for his overall support towards the social rights of members.

Mr Christopher Schembri, Head of San Andrea school, also received an award. He took it upon himself to make sure that students with a rare disease are fully supported in their school by creating an inclusive and safe environment which is one of the main goals of the Alliance. 

Mrs Muscat said, as she handed him the award: "To have an educator go that extra mile to help support a child with a rare disease, is an act of kindness to be applauded and hopefully copied." 

Mr Schembri created a rare disease awareness campaign amongst students and teaching staff at school and beyond, with the launch of a book written by a student with educational needs in aid of the National Alliance for Rare Diseases Support Malta. 

The Marigold Foundation and the National Alliance for Rare Diseases Support Malta are funding a research pilot project (Eur10,000) on the occurrence of hereditary immunological disorders in the Maltese population which will help detect rare immunological conditions in babies and thus assist with treating them earlier rather than later in their lives.

The research is to be conducted by students and clinical researchers at the BioBank of the University of Malta in the Faculty of Medicine and the Center of Molecular Medicine and Biobanking through the Research Trust of the University of Malta together with researchers from the US National Institute of Health under the direction of Dr Keith Sacco and Professor Alex Felice.

Dr Sacco is a clinical fellow in Allergy and Immunology at the National Institute of Health (United States). He graduated Doctor of Medicine and Surgery (M.D.) with distinction from the University of Malta and pursued Internal Medicine residency at Mayo Clinic where he served as acting chief resident and obtained gold certification from the Mayo Clinic Quality Academy.

In Mrs Muscat's words: "Research is the key. We need help to find more answers and support with further research. The possibilities are endless."

This is not the first time I have attended this fundraising dinner. A couple of years ago Sean Ferrer, one of Audrey Hepburn's two sons, came and spoke at several events.

This year I was placed on a table of women who either themselves suffer from a rare disease or have a child (or more) or someone in the family who suffers. It was an education. These women were cheerful and carry their crosses lightly.

One woman told me that she has three children and the eldest and youngest have a rare condition. "When our eldest child was born no doctor could tell us for a long time what the condition was." This brave couple had another child which was healthy. So, they decided to have a third child. "This was disastrous," the mother tells me. Our last son's condition is even worse than that of our eldest. He has a number of disabilities. Finally one doctor pointed out that it must be genetic. Somewhere in the family, possibly generations ago the couple are related. It happens on small islands. 

Of course many pills are involved to make life more tolerable for everyone. However, there are difficulties. Certain pills are not imported in Malta. So one of the parents flies out to England regularly to purchase them and no, you cannot get a year's supply. Just three months supply is permitted. The Alliance did their utmost to help but did not succeed for there are rules and laws.  So the parents have decided to go back and live in England. The mother spent her first 10 years in England anyway and believes that under the circumstances it is best for everyone.

I stood there in admiration of this lovely woman... and another one next to me who told me her sad story of disease, too. Goodness knows how many similar stories there were on that table alone.

Mrs Muscat has found her niche in life. She is a force for good. I read this quote and would like to share it with you:

"I cannot believe that the purpose of life is to be happy. I think the purpose of life is to be useful, to be responsible, to be compassionate. It is, above all to matter, to count, to stand for something, to have made some difference that you lived at all." -Leo Rosten 

And another quote from one of my Cahiers, in which, for many years, I have copied inspirational quotes:

"Ogni meditazione è vana, ogni sacrificio è inutile, ogni perfezione si trova bloccata, se la nostra anima non è bagnata e torturata dalle sofferenze degli uomini..." Tikno Adjam

Yes, without empathy and compassion we are little more than beasts no matter how brilliant we are.

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