Newsletter
March 2017: Issue 9
One thing I wil not allow ALS to do, however, is to stop me from UPPORTER continuing my work
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A news bulletin for the supporters of the University’s Research Trust
The importance of Leaving a Legacy by Iggy Fenech Few Maltese people have managed to enter our collective consciousness the way Bjorn Formosa, founder of the ALS Malta Foundation, has. In the year and a half since he founded the ALS Foundation, he has become universally recognisable on the island, with TV programmes and column inches detailing his very real and very scary illness. Bjorn, however, does not particularly look for the fame or the recognition; with months left to live, his only goal is to ensure that he sets the ball rolling so that, one day, being diagnosed with ALS will not be a death sentence.
Meeting Bjorn at the offices of the ALS Foundation in Hamrun, the extent of the illness becomes increasingly clear as special ramps and lifts are needed to get Bjorn from street level down into the art gallery with his wife, Maria, by his side. The first thing that hits you is Bjorn’s determination to not let anything hinder him. In fact, as his illness continues to take away the most basic functions of his body, his mind and spirit become more resolved in their quest. “It’s difficult to say how this illness has affected me psychologically,” Bjorn says, “but I’ve become more determined than ever before and, while I know that I’m moving closer towards death, I always hope that it won’t happen... Research, Innovation & Development Trust
One thing I will not allow ALS to do, however, is to stop me from continuing my work. Every day is another day I’ve survived and that mindset makes me want to work harder.” ALS which is short for Amyotrophic Lateral Sclerosis, is sometimes also referred to as the Lou Gehrig’s Disease. A neuro-degenerative disease, ALS stops the body’s motor neurons from sending signals to the nerves, which, in turn, stops them from communicating with the muscles, causing them to atrophy and die. Weakness starts in the voluntary muscles of movement until it reaches the involuntary breathing muscles and leads the sufferer to death within three to four years’ time. Continued on page 2
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Message from
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This edition of SUPPORTER gives particular tribute to the indefatigable Bjorn Formosa, who has managed to win the hearts of the nation in a matter of months. Bjorn was dealt a very difficult hand, something that would have shattered the strongest amongst us. He was diagnosed with a degenerative disorder at the age of 28, just when he was riding on the crest of success. Till that time, few knew much about ALS, apart from the ice-bucket challenge hullabaloo that we had experienced a few months prior to his diagnosis.
What Bjorn did gave a new meaning to the term ‘leaving no stone unturned’. He has been campaiging and fundraising ever since his diagnosis and has managed not only to raise awareness about Motor Neuron Diseases (MND) across the country, but has also managed to single-handledly raise serious amounts of funds which are being used to help present and future ALS victims in a number of ways. One forward-looking way how Bjorn is doing this, is his decision to support a PhD scholarship in MND which we are aptly naming ‘The Bjorn Formosa Advanced Scholarship for Research into ALS/MND’. This scholarship will also establish a blood/DNA biobank from Maltese ALS/MND patients which will be used to test for any abnormalities in the genes identified in preclinical animal models, in order to drum up support linking the identified gene/s to the disease mechanism. It could well be that there is not much one can do for people who suffer from ALS today, and Bjorn knows this too well. There is however something that can be done to better understand the disorder, and to hit it before it hits others. That can only be achieved through investment in research which will see Malta joining the international community in the fight against motor neuron disease. This is what Bjorn has done through his legacy and through his support. Wilfred Kenely Chief Executive Officer
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So far, there is no cure for ALS sufferers.Yet, with the foundation of ALS Malta, Bjorn has created a structure that works towards three, clear aims: raising awareness, improving the quality of life of patients, and research. And Bjorn hopes that this will continue long after he dies. “The ALS Malta Foundation’s aim is to ensure the continual support of ALS patients from all angles,” Bjorn explains. “We want the work to continue even after I die, which is why there is a board of professionals that will be administering the Foundation and, according to the instructions and guidelines set by the ALS Malta Foundation, will be ensuring that the project becomes one that is able to regenerate itself… Hence why some of the money that has been raised so far is being invested. “We have no clue how long it will take to find a cure for ALS, so it is important that we work towards having enough cash to invest in equipment for ALS sufferers, and to continue generating money to raise awareness of the disease and to inject into the on-going research taking place both locally and abroad.” In Malta, there are currently around 35 people who suffer from ALS, with 15 of them receiving financial help from the ALS Malta Foundation. Bjorn, however, is adamant that research should be a core part of the way the money is invested by the Foundation and, with the support of RIDT, he has set up the ‘Bjorn Formosa Advanced Scholarship into MND and ALS Research,’ which will fund a PhD or post-doctorate on a yearly basis, increasing the team of experts and researchers in the sector. “The foundation is something I’ve only been working on for one and a half years, and I definitely haven’t achieved all that I had set out to achieve. My time, however, is ticking, and I hope that this is only the start of a project that will be bigger and, hopefully, even lead to clinical trials taking place here in Malta so that Maltese people who have ALS can be a part of them. “This is not something that’s easily attainable, of course, but it’s something that’s incredibly important. Nevertheless, the five-year plan is to continue building on the work done so far, to fund more research, and to be a point of reference for anyone with ALS. It’s a long journey and we hope to keep building on it throughout the years.” Bjorn, through his undying spirit and thanks to the funds raised from so many sources and people, has created a structure that will outlive him. Indeed, this legacy is an incredibly important concept for Bjorn, particularly as that is what will ensure that his dream of one day finding a cure for ALS turns to reality. www.alsmalta.org/donate. Research, Innovation & Development Trust
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Why . . I am proud to be a donor Guzeppi Theuma
I have been creative since childhood and at an early age took part in small exhibitions and followed the prominent artists of the time. I was happy being an artist but although I had plenty of opportunities I never felt the need for a personal Exhibition. Recently a good friend persuaded me to celebrate my 50th year since I became active in art by making it more worthwhile. It put meaning into my efforts and I determined to do it. I chose RIDT as the beneficiary because I believe in long term results. This was an opportunity to share my success with those who are hindered by their poor health conditions. RIDT is investing in the future. Research is important because with it the future will be healthier. It gave my exhibition a meaning. My art has suddenly changed its course and encouraged me to produce more and by doing so I would also be involving those who acquire my work. My contribution, albeit small, will hopefully encourage fellow artists to follow my humble example and our art will not only brighten art galleries but also to enlighten the hearts of those who suffer. .. Il-Vjag by . . g (the journey), a solo retrospective art exhibition Guzeppi Theuma was held at the Razzett tal-Markiz. in Mosta between the 11th and the 25th of February 2017. A percentage of the sales of the exhibits has been donated to RIDT for cancer research. Photography by Lance Anthony Brown
ALS Malta Foundation to fund doctoral research programme through RIDT The ALS Malta Foundation, set up by Mr Bjorn Formosa, has donated funds for a three-year Ph.D. scholarship to the University of Malta, through the University’s Research Trust (RIDT). Amounting to €90,000, the funding will sponsor a postgraduate study programme in ALS, also known as motor neuron disease (MND). The scholarship will be named as the “Bjorn Formosa Advanced Scholarship for Research into ALS/MND”, named after the founder and chairman of ALS Malta Foundation. Mr Formosa has distinguished himself as a trailblazer in ALS advocacy and fundraising. The rector of the University of Malta and chairman of RIDT Prof. Alfred J. Vella and Mr Bjorn Formosa signed the three-year agreement, followed by a donation presentation at the Valletta Campus. The scholarship has been established with the aim of attracting and funding promising young scientists to develop their careers in ALS/ MND research. The research programme will be led by Dr Ruben J. Cauchi. At the beginning of this year, a call for applications was issued to select a candidate. While thanking Mr Formosa for his noble initiative and determination, Prof Alfred J. Vella said: “This donation to the MND Lab at Research, Innovation & Development Trust
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the University will strengthen and expand its mission in furthering the understanding of the mechanisms underpinning motor neuron disorders. Such knowledge enables researchers to develop treatments to improve the lives of patients with this incurable condition.” 3
The de Soldanis dictionary:
250 years later
The RIDT is proud to have been instrumental in the publication of Damma tal-Kliem Kartag.iniz. by De Soldanis, a unique dictionary completed around 1767 but never published. The financing of the project was made available by The Council for the Maltese Language, Heritage Malta and BPC International limited, through the Research Trust of the University.
The Damma is a exceptional achievement in that, beyond the meanings one usually expects to find in such a work, a wealth of information about contemporary culture is also included. De Soldanis’ dictionary differs from other eighteenth and nineteenth century similar works in that the Damma includes many Sicilian and Italian loanwords. Not only, but the author was keenly aware that language change could result in the loss of many words and he tried to preserve them by recording them before it was too late. Two graduates from the Department of Maltese, Rosabelle Carabott and Joanne Trevisan, transcribed the work under the supervision of Department staff. This work was only made possible through the generous help of the National Library and the National Council for the Maltese Language. Through this collective effort, the University is handing over to the public a monumental work on the Maltese Language.
G. F. Händel
Sunday 16th april - 19:00 hrS St paul’S pro-Cathedral, Valletta
proceeDS in aiD of MeDicaL reSearch
GoldberG enSemble Director: miChael lauS Gillian Zammit - Soprano
Clare maSSa - Mezzo Soprano
edward Camilleri - tenor
albert buttiGieG - BaSS Booking info: tiCketS €25 Booking hotLine: 2124 6389 • 7941 2139 bookinGS@teatrumanoel.Com.mt http://bookinG.teatrumanoel.Com.mt/
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Research, Innovation & Development Trust
SUPPORTER Issue 9