THE CHILDREN S MEDICAL & RESEARCH FOUNDATION (CMRF) ADDITIONAL OPERATING INFORMATION

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THE CHILDREN S MEDICAL & RESEARCH FOUNDATION (CMRF) ADDITIONAL OPERATING INFORMATION Q: How is the CMRF funded? The CMRF relies completely on the generosity of donors and a wide variety of fundraising activities organised by both volunteers and the CMRF. The CMRF does not receive any funding from the HSE or Department of Health. CMRF s purpose is to give sick children the very best chance in life, made possible by our caring donors, our passionate volunteers and our organisation s commitment to excellence. Q: How are donations spent? Significant progress has been made in recent years. In the past three years alone, we have been able to make grants of more than 18m to Our Lady s Children s Hospital, Crumlin, enabling extensive improvements in the environment for some of the country s sickest children under care at the hospital. We have also continued to fund paediatric research and another 18m has been invested during that time in projects at the National Children s Research Centre (NCRC) which is based on the Crumlin campus. A further 18m is currently committed to research projects over the next four years, making the CMRF the largest funder of paediatric research in the country. Q: Are any donations used to top-up salaries at Our Lady s Children s Hospital, Crumlin. No. All funding from the CMRF to Crumlin Hospital is for the benefit of sick children. Q: Specifically, how have donations been spent in the hospital? The following table represents the main areas of investment in recent hospital projects: EXPENDITURE AREA m Impact The Children s Heart Centre 4.8 Construction of a brand new, state-of-the-art dedicated cardiac unit featuring: 25 bed facility predominantly single rooms, catering for the 550+ patients treated annually En-suite single rooms for older patients Two rooftop gardens Renovation of National Cancer Centre (St. John s Ward) 4.2 Providing dignity and space to children suffering from cancer. The newly renovated centre includes:- 19 en-suite single rooms / 4 isolation rooms Improved Parent facilities Specific facilities for teenage patients Redesigned and improved schoolroom/playroom Private space for clinicians to meet with parents Ward Refurbishments & Improvements 1.8 Full upgrade of St. Michael s Respiratory Ward, including the development of teenager facilities Full upgrade of St. Josephs Orthopaedic Ward Full upgrade of St Brigid s Surgical Ward Medical & Theatre Equipment 2.8 Over the past 3 years, an average of almost 1m per year has been provided to OLCHC for upgrade of medical equipment to enable improvements in diagnosis and treatment of sick children.

Overhaul of Catering facilities 1.1 Almost 1,500 people are catered for in Crumlin every day, including, most importantly, the patients. Nutrition is a very important component of the care of sick children. This badly-needed overhaul of the hospital kitchens has not only delivered the appropriate environment for food preparation and serving, but has also provided a special food preparation area for those children with specific food and nutrition needs. Replacement of main hospital lifts/building repairs 0.5 These lifts are vital for the quick and efficient transport of patients from the Emergency Department to surgery, ICU and the wards. The main hospital lifts are also critical to the efficient movement of the 2,000 people visiting the hospital each day. Library & Classroom refurbishment 0.8 Enabling the constant up skilling and education and development of the Clinical, Nursing and Allied Health professionals at Our Lady s Children s Hospital. Diabetes services & support 0.2 A dedicated fund to help provide lifestyle improvements for children with diabetes Emergency Department (E.D.) Refurbishment 0.5 The complete refurbishment of the E.D, where over 35,000 children are treated every year. Floor capacity was increased by 30%, along with the upgrade of critical monitoring equipment. Patient Comfort & Support 0.3 A stay in hospital for a very sick child can be traumatic for both the patient and their family. Helping make their stay more bearable through funding teenage events, play therapy and clown doctors can alleviate some of the stresses. Miscellaneous grants 1.0 In addition to the major projects above, hundreds of minor grants have been provided to the hospital, including bed store development, medical records improvements and a formula room refurbishment. Q: What has been invested in paediatric research over the past 3 years, and in what areas? CMRF continues to fund ground-breaking projects at the National Children s Research Centre, the largest dedicated paediatric research facility in Ireland. Paediatric research is chronically underfunded, yet is absolutely vital in order to unlock improvements in the care and therapies for the country s sickest children. The following table shows the major research projects funded by the CMRF and managed by The National Children s Research Centre between 2010 and 2012. RESEARCH AREA m Impact Paediatric Cancer 4.3 Certain Childhood cancers remain resistant to treatment and these are the cancers the NCRC are focussing on: Neuroblastoma tumours developing methods to make treatment more effective and less toxic. Sarcomas and Renal Cancer developing a greater understanding of the genetic influence in these cancers Immunology: The International Journal Science stated in 2010 inflammation is a driving force behind chronic diseases that will kill nearly all of us While the role of inflammation in adults is widely investigated studies on infants and young children are a comparatively 3.1 Specific focus on two conditions effecting a large cohort of children: Eczema: World leading study on both the genetic and cellular changes for children with eczema Cystic Fibrosis: Investigating the nature of Lung damage in Children with Cystic Fibrosis from birth through a network of centres across Ireland.

unexplored area. Clinical Research: 3.1 The NCRC have established a clinical research space within Our Lady s Children s Hospital supporting research that takes place in a clinical setting. The role of the Unit is to strengthen and expand the evidencebase for paediatric healthcare Birth Defects 2.6 3 in every 100 children born in Ireland will have some form of birth defect. Continuing research into this area is a core component of the research work carried out in the NCRC. An example of this research is Vesicoureteric Reflux of the kidney an all-too-common defect in newborns, focussed on examining the genes and mutations responsible for this urological anomaly, in order to improve the treatment. Obesity & Diabetes 1.6 Childhood obesity is a significant public health problem with 1 in 4 Irish children either overweight or obese. The aim of this project is to examine determinants of childhood obesity at the individual and ecological level through the dissemination of a new cross sectional study in 1000 9-year old school children. MD / PHD Programme 1.7 Developing and training the next generation of researchers, in order to foster their growth and academic advancement many services and funding opportunities are provided. Seed funding for research project themes 1.7 Seed funding awards and small start-up grants are used to get projects off the ground, helping define the specific parameters of research projects before significant multi-year funding commitments are made. Q: So what about the costs? Has this growth meant additional expenditure of donors money on administration and marketing? No. Between mid 2010 and end 2012, annual fundraising increased from 10.5m to 12.9m, whilst realising cost savings of over 300k per annum. This represents a 23% increase in annual income and a 7% reduction in total costs. Q: What about cash reserves? Why does the CMRF have these reserves? CMRF s cash reserves have been reducing sharply since 2010, as expenditure on hospital and research projects increased significantly at that point. Current cash reserves stand at 7m; this represents about 6 months expenditure commitment. It is prudent to reserve about one year s commitments, to ensure that the Foundation can fund live projects, particularly if there is any disruption to our capability to raise funds as we experienced in the last quarter of 2013, where our fundraising fell c. 2m short of our target. Q: What is the CEO s package? The CEO is on a 5-year contract from June 2010. Details as follows: Annual salary: 130,000 (this includes a recent salary reduction of 9%) 10% of salary contribution to pension fund (PRSA) The CEO is also provided with a car

Q: What about the CMRF Board? Who are the board members? The CMRF Board is chaired by Mr. Shane Molloy, who has been Chairman since 2009. Full details of CMRF Board members can be found on our website at www.cmrf.org. The CMRF board members bring with them a very broad range of skills and experience to ensure the best decisions are made in relation to our donor s funds. Board members come from a wide variety of backgrounds, with strong experience in the areas of paediatric research, clinical practice, business, finance, governance, media, marketing, legal, public service, technology and philanthropy. Two members of the Board of Crumlin hospital are also nominated to the CMRF Board. In addition to these two hospital board members, Dr. Michael McDermott, Consultant Histopathologist, Dr Jerry Kelleher, retired Consultant Radiographer, and Professor Prem Puri, President of The National Children s Research Centre, are also CMRF Board members, bringing invaluable expertise and experience to Board meetings. Are board members of CMRF paid anything for their role as directors? No. All directors volunteer their time as board members and are prohibited from receiving any remuneration for their role as a CMRF director. Dr McDermott is employed by Our Lady s Children s Hospital, Crumlin and Professor Puri is employed by the National Children s Research Centre. Q: What about the future? The country s recent economic difficulties continue to place great financial strain on our health system, and unfortunately public funding is simply not available for anything but the most essential front line services. There is extremely limited public funding available for medical equipment, hospital upkeep or medical research. However, if we want to give our sick children the very best chance they can get, it is vital that we continue to build on our recent progress. The needs of the hospital and research are increasing relentlessly. This need can only be met with the help of our supporters and the continuation of a strong fundraising organisation, with excellent capability, governance and leadership. The staff and directors of the CMRF are committed to maintaining the highest standard of corporate governance and management of the organisation s activities. To that end, part of the CMRF s continuous improvement programme is currently focussed on the adoption of The Governance Code for Community, Voluntary and Charitable (CVC) Organisations. The CMRF Board is committed to the adoption of the CVC code during 2014, and also welcomes the establishment of an appropriate Charity Regulatory Authority in due course. Q: Where can I get more detail about the CMRF s operations? Full details on the CMRF s activities, background and history are on our website www.cmrf.org. In addition, our latest annual report is a useful source of information in relation to the CMRF s operations. This can also be found on our website through the following link: http://www.cmrf.org/images/uploads/general/2012_annual_report.pdf. Key operating statistics for the years 2010 2012 are shown on the table below.

SUMMARY CMRF PERFORMANCE KEY ANNUAL OPERATING STATISTICS 2010 2011 2012 Total Income 10.9m 11.4m 12.9m Total Grants made to OLCHC and NCRC Direct Fundraising Costs Note 1 10.1m 11.1m 11.4m 2.3m 1.9m 2.2m % of Total Income 21% 18% 17% Governance & Support Costs Note 2 2.1m 2.0m 1.9m %Total Income Staff costs included in Support Costs above 19% 18% 15% 1.5m 1.5m 1.5m Number of Donors 33.7k 35.5k 37.1k Government Funding 0 0 0 None Directors Remuneration 0 0 0 None Note 1 Direct Fundraising Costs These are the costs incurred to facilitate and generate fundraising activities and include the following: Marketing: advertising costs - radio ads, newspapers ads and inserts, direct mail, outdoor advertising, online advertising. Communicating with supporters: Production/printing of newsletters, postage costs Cost of running events and activities: Golf classics, gala balls, marathons, overseas challenges, cycles, community events, car raffle costs Fundraising materials used (for example posters, t-shirts, tickets etc.) Note 2 Governance & Support Costs These are the day to day running costs of the organisation and include salaries, light & heat, post and telephone, insurance, building maintenance and audit & legal fees.