The Malta Independent on Sunday
Creating awareness and raising funds for rare diseases
On the last day of last month the Ballroom of the Hotel Phoenicia, now beautifully refurbished, with long mirrors strategically placed, (so that we can admire ourselves, or otherwise) was teeming with elegant supporters of Rare Disease Day, the 11th one this year. This was the day The Marigold Foundation held its annual fund raising dinner in aid of the National Alliance for Rare Diseases Support – Malta.
It was a black pearl evening and ladies were invited to wear black – and the majority did and looked very elegant too. I did not read the small print and turned up in a beige top. I must stop being so distracted. It would have been so much worse had I worn red.
Last year the event was held at Palazzo De Piro in Mdina. Much as I enjoyed it, when it comes to ease of parking, the Phoenicia is perfect, with two large carparks right near it. I don’t like saying it but I have come to avoid anything in Mdina, much as I love it, as you cannot enter with a car unless you are a resident and the parking right outside is almost always full. Lack of parking is a deterrent wherever one goes these days. Whenever I am invited to an event first of all I consider the parking facilities. I believe it is the same for us all.
The evening started just outside the Phoenicia where Felix Busuttil read a poem and his young dancers and a quartet entertained us. It was a chilly evening and we were glad to get indoors for drinks and canapés before dinner.
Guests at the event also enjoyed an exhibition of ‘rare’ fashion by James Dimech. We also participated in an interactive face painting social media campaign to raise awareness of rare diseases and show our support for the rare disease community by painting our face and sharing our selfies.
*** The Alliance was set up in 2016 by the indefatigable Mrs Michelle Muscat who is President of this National Alliance and Chairperson of The Marigold Foundation. Audrey Hepburn’s son Sean Hepburn Ferrer had come out especially for the launch. The initiative was taken by Mrs Muscat in memory of her mother, Mrs Emanuela Tanti, and all victims of rare diseases. So many suffer, sometimes without knowing it, of a rare disease which is life threatening or debilitating. These are diseases which affect about 1 in 2000 people. Mrs Tanti was one of them. There are many more, even in Malta. Over 600 rare diseases are characterized by a broad diversity of disorders and symptoms. Special combined efforts are needed to address them and find a cure. Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delayed treatment. I know of at least two people who lost a spouse and they told me: ‘No one really knows what he/she died of’. The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. This Alliance tries to provide support in several ways to as many sufferers and their families as possible.
*** The Alliance represents a higher number of patients speaking with one voice, thus providing a stronger voice than a single dis- ease support group. There is strength in numbers, as we know, and this organization seeks to advocate and provide a network for all rare disease patients, and their families, to help them improve their quality of life. It also strives to strengthen already existing community services and rare diseases groups, by taking a central role in helping these entities take their cause to a higher level. The aim of the Alliance is to provide both national and international support for its members. It is a worthy cause indeed and Mrs Muscat works hard throughout the year liaising with local doctors. Research is so essential. Because these diseases are rare in many cases there may be no cure available. Often there is no medication as yet invented for so many of these diseases, even if a diagnosis is finally made. Indeed, if medication is available it is often expensive and unaffordable by the average person. The Alliance also raises awareness which is so crucial, provides support and information and encourages further research.
*** Dinner was lively and the food excellent. I was sitting between the Minister of Education and his wife Gillian whom I have known for years, so there was not a dull moment. Also on the table was Minister Fearne and his pretty wife. I noticed he barely touched his chocolate dessert, laden with calories. Mrs Fearne told me he gets up very early every morning and goes to the gym. I commented on his self control and quite rightly he said that all those calories would undo in no time what he works hard at every morning. How right he is. No wonder he is so slim… and I am anything but.
Mrs Muscat made a very good speech and convinced us that this cause is truly worth supporting. She praised our Ambassador to Belgium, Mr Ray Attard and said how helpful he always is whenever his co-operation is needed. Mr Azzopardi too, made an excellent speech.
There were many generous prizes too and a very pretty present, beautifully wrapped, for the ladies.
This was a well organized evening and thanks must go not only to Mrs Muscat who gives so generously of her time and energy but also to her team and the team of the Phoenicia who gave a flawless service in spite of the huge number of diners. I must mention in particular Jennifer Xuereb who is Executive Secretary of the Marigold Foundation and who seems to be everywhere she is needed. How she does it all I don’t know for she also has a family.
I must say I never knew of the existence of so many rare diseases until the Alliance was launched. It has managed, apart from anything else, to create awareness and a conscience.
A very Happy Easter to all our readers! mbenoit@independent.com.mt