To the Mater Misericordiae University Hospital, Dublin - Sequencing Equipment to Provide Genomic
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to Provide Genomic Sequencing Equipment to the Mater Misericordiae University Hospital, Dublin www.shabracharity.com 1
Rita Shah, Co-Founder Member, Shabra Charity Foundation www.shabracharity.com The late Oliver Brady, was ‘One of a Kind’ who touched the lives and hearts of so many and he will never be forgotten. Oliver is missed beyond what words can express but loyalty, being true to his word and overall ethos, will always live on in The Shabra Charity we built together. Shabra Charity Foundation was set up by Oliver and myself a few years ago and together with a very strong committee we have raised over €600,000 and donated to St Luke’s, Tallaght, Mater Hospitals to purchase much needed equipment for the heart, cancer and eye care and also supported for research in cardiac and cancer. We have also built schools in Nigeria and Kenya. Why Shabra Charity is so special?? Oliver and myself as co-founders of the charity have believed in full transparency – Shabra charity Foundation do not have any paid staff whatsoever, and all our charity work is carried out by volunteers who with true generosity work tirelessly giving their valuable time at no cost to raise monies for worthy causes. I take this opportunity to salute all the committee members, sponsors and donors. During his short treatment at the Mater Private, he promised the Mater (Public) Hospital through Shabra Charity, to fundraise and supply much needed Specialist Genomic DNA Gene Sequencing Equipment, the first in Ireland which would help the people in Ireland who are dying due to lack of DNA Gene facilities. I am determined to help Oliver to keep his last promise to the Mater Hospital by redoubling The Shabra Charity fundraising efforts in order to provide this much needed equipment to the Mater (Public) Hospital as soon as possible, in his honour and memory. All proceeds from this event will be used towards the purchase of the much needed equipment. Shabra Charity Foundation is a fully registered charity in Ireland was co-founded by Rita Shah and the late Oliver Brady. Fully registered Charity in Ireland - Registered Charity Number: CHY 19130 Reg. Office: Killycard Industrial Estate, Bree, Castleblayney, Co. Monaghan -------------------------------------------------------------------------------------------------------------------------- Heather Humphreys TD, Minister for the Arts, Heritage and the Gaeltacht "I had the privilege and honour of knowing Oliver Brady who was an amazing man and whose vision and determination had such a positive impact on his community. He provided much needed employment in Co Monaghan through the award winning company, Shabra Plastics. "Oliver also had a huge impact on the lives of many people across the country through the great work of the Shabra Charity Foundation. His legacy and generosity of spirit lives on today through the continued fundraising efforts of his business partner and friend, Rita Shah." 2
Paráic Duffy – Director General GAA The GAA is delighted to host today's launch of the Shabra Charity Foundation fundraiser for the state of the art Gene Sequencing facilities at the Mater Hospital which will help save young people’s lives. Mary Day, CEO, Mater Misericordiae University Hospital, Dublin It is a great pleasure for me to take this opportunity to support Rita and the Shabra Charity Foundation on launching this outstanding fundraising campaign, in memory of Oliver, to purchase Genomic Sequencing equipment for the Mater Hospital. Through the funds you have worked so hard to raise, this equipment will bring great benefits to so many of our patients; including patients with cancer and non-cancer and patients with rare and common disorders. Research into genetics over the last thirty years has already resulted in a substantial change in how we approach disease and health and we are excited by what the future holds and the potential of this exciting technology. The back-to-back approach of a clinical adult genetic service looking after patients with genetic disorders and diagnostic testing in a state-of-the-art laboratory is an overdue requirement for this country. The Mater has a cohort of clinicians with a deep interest in genetics. Most have been involved in research and clinical aspects of genetics over the years including cardiology, metabolic medicine (we have the adult centre for adult metabolic disease on campus), neurology, ophthalmology, onco-genetics, liver, gastrointestinal disorders and infectious disease. Therefore, the Mater has the interest, passion, drive and space to set up this laboratory in parallel with the adult genetic service. This will be achieved by working closely with UCD and the Dublin Academic Medical Centre and St Vincent’s University Hospital. I would like to express my sincere gratitude to Rita and Shabra for giving the Mater Gene Sequencing project such a high profile and to thank everyone who has supported us in creating a state of the art, world class genetics service in this country, your efforts have achieved so much. Professor Peter O'Gorman MB FRCPI FRCPath PhD, Clinical Director of Pathology/Consultant Haematologist, Mater University Hospital, Dublin Professor of Experimental Haematology, Dublin City University The tremendous fundraising effort by Rita and Shabra in memory of Oliver will enable us to build a world class laboratory to compliment the clinical specialities at the Mater. This will save lives. 3
Dr. Joseph Galvin, Consultant Cardiologist, Mater Misericordiae University Hospital Cardiac Genetics at the Mater The Family Heart Screening Clinic at the Mater Heart House has been providing comprehensive cardiac evaluation of families affected by sudden cardiac death due to SADS (Sudden Arrhythmic Death Syndrome) or an inherited cardiac disease since its opening in 2007. Numbers have increased steadily from 251 patients in 2007 (246 new) to 1460 patients in 2014 (562 new). The culprit gene mutation responsible for a family’s inherited heart condition or the tragic sudden cardiac death of a young person can be identified in up to 70% of families and can be used to identify other family members who are at risk and most importantly, those who are not at risk. Genetic testing is recommended in international guidelines governing the management of families with inherited cardiac diseases. Unfortunately, clinically accredited gene sequencing is not yet available in Ireland and blood samples are sent abroad for genetic testing. Ireland is one of the few countries in Europe that has not developed expertise in clinical gene sequencing within its own country. At the Mater Hospital, in collaboration with UCD and the Dublin Academic Medical Centre we now plan to set up a clinical gene sequencing programme that will benefit patients and families with inherited diseases not only effecting the heart but effecting any organ system including inherited neurological, metabolic, gastrointestinal, endocrine and ophthalmic diseases. To fund this will require significant investment. We are delighted that SHABRA has offered to help the Mater achieve this goal by helping us purchase the critical gene sequencing equipment required to run the programme. We estimate that this will cost approximately €750,000. Thank you to SHABRA and to all its contributors and supporters for helping us provide this badly needed service. Dr David Keegan, Consultant Vitreo-Retinal Surgeon, Mater Misericordiae University Hospital, Dublin "With the adoption of the National Care Plan for Eye Care and the successful roll out of the Diabetic Retina Screen programme we are going in the right direction to tackle preventable blindness in Ireland. Now is the time to start developing the tools and practices to address the currently non- preventable causes of blindness such as inherited retinal degeneration. The ability to accurately determine the genes that cause retinal degeneration is vital to best direct patients’ management. New treatments such as gene therapy, artificial retinas, stem cells and growth factors are on the horizon. If Irish patients are properly characterised (via a genomic testing system) they can benefit from treatments here or as part of clinical trials elsewhere. Perhaps even more importantly their children and younger relatives will benefit from a familial characterisation so therapy can be implemented early. With a properly co-ordinated system also employing more geneticists and counsellors we can herald a new era in care for patients with genetically determined ocular conditions." 4
Prof Timothy Lynch, FRCPI, FRCP (Lond), Consultant Neurologist, Mater Misericordiae University Hospital, Dublin "I promised to put to pen a couple of thoughts I had with regard to this initiative. When I was a medical student it was apparent to me that there two main areas of science that were going to change medicine. These included immunology and genetics. Genetics is so crucial. It touches upon all aspects of medicine including paediatric care, adult healthcare, cancer, non-cancer, and rare and common disorders. It is the backbone of who we are and defines us and our next generations. Research into genetics over the last thirty years has already resulted in a massive change in how we approach disease and health. Ireland needs to develop a world class genetic service for children, adults, patients with cancer and non-cancer and patients with rare and common disorders. This service can be developed at the Mater with Shabra’s support. Shabra’s support will allow us to set-up a national Molecular Diagnostic Laboratory to provide diagnostic testing for patients across Ireland with different forms of genetic disorders including obstetrics, paediatrics, adult medicine, cancer and non-cancer, rare and common disorders. We will support the diagnostic laboratory with our adult genetic service. We already have 3 adult geneticists on campus and we plan to recruit more. The back-to-back approach of a clinical adult genetic service looking after patients with genetic disorders and diagnostic testing in a state-of-the-art laboratory is a requirement for the country. This will not only provide an excellent clinical service but will also stimulate academic teaching and research. We already have a specialist registrar in genetics working on the Mater campus rotating through various services including metabolic disease, adult genetics, neurogenetic clinic, cardiology/genetic clinic and cancer genetics. Secondly the National Office for Rare Diseases is based in the Mater under the supervision of Prof Eileen Tracey. Most rare diseases have a genetic background and hence the laboratory will have a close working relationship with this office in the future. The Mater has a cohort of clinicians with a deep interest in genetics. Most have been involved in research and clinical aspects of genetics over the years including cardiology, metabolic medicine (we have the adult centre for adult metabolic disease on campus), neurology, ophthalmology, oncogenetics, liver, gastrointestinal disorders and infectious disease. Furthermore UCD and the Mater are about to appoint 4 Professorial Chairs in medicine, pathology, gynae/oncology; microbiology/infectious disease and cancer genetics. It is likely that all these Chairs appointed will have to have significant molecular biology training. Therefore the Mater has the interest, passion drive and space to set up this laboratory parallel with the adult genetic service. This will be done working closely with UCD and St Vincent’s University Hospital via the Dublin Academic Medical Centre. It will be a state-of-the-art service." 5
Current Shabra Fundraising Activities: €5 Draw for tickets to all the games at Croke Park – draw to take place on 9th July, 2015 Donate online to be included in the Book of Remembrance which will be kept on display alongside the Genomic Sequencing Equipment in the Mater Misericordiae University Hospital Text Donation (see last page) Suck a Lemon Challenge (see Shabra Charity Facebook) Fundraiser at Shannonside Midsummers Day with the Stars Concert at Roscommon Racecourse on 28th June 2015 Shabra charity Oliver Brady Memorial Cycling Event to be held on 5th September, 2015 Shabra Charity Oliver Brady Memorial Horse Racing Event – to be held on 24th January, 2016 at Leopardstown Race Course. Further Details please visit www.shabracharity.com 6
Shabra Charity Foundation Fundraising for the Genomic Sequencing Equipment for the Mater Hospital on Thursday 18th June 2015 @ 2.30pm MC: Brendan McGowan (Member of Shabra Charity Foundation) Speakers: Rita Shah (Co-Founder of Shabra Charity Foundation) Paráic Duffy (Director General of GAA) Mary Day (CEO of Mater Hospital) Joe Galvin (Consultant Cardiologist) David Keegan (Consultant Vitreo-Retinal Surgeon) Peter O’Gorman (Consultant Haematologist) Minister Heather Humphreys TD, (Minister for Arts, Heritage and the Gaeltacht) Event Contact Name & Number: Rita Shah 087 9317100 / 086 8543743 Nudie Hughes 087 7708661 Anita Smyth 087 9317077 7
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