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Providing practical help Celebrating success, new targets Tony Melman Childhood Cancer Charitable Council Chair The POGO Young Leadership Connection also deserves credit for its achievements in its inaugural year. These young business and community leaders have made a long-term personal financial commitment to POGO and are determined to attract the support of their peers. Started by five individuals just over a year ago, membership has already grown to over 45, with pledges totaling over $100,000. Over the past year, POGO’s Pediatric Oncology Financial Assistance Program (POFAP) has provided support to over 1,100 families with children in cancer treatment. The Program is intended to ease some of the financial burden that childhood cancer can inflict on a young family. It’s not unusual for one parent to quit work to care for the ill child, resulting in a sudden drop in the family’s income. And, for families who live a distance from the tertiary treatment centres, the cost of daycare for other children, travel, accommodation, and meals, can all add to the strain on their reduced budget. The POFAP application process is deliberately short and simple. Funds are dispersed to each of the five tertiary centres so that there is equal, timely access to the support for families who need it. POGO currently distributes $500,000 a year to Ontario families, however, as the number of families seeking POFAP assistance grows, so does the funding challenge. “We’re stepping up our fundraising efforts,” says Bill Frid, POFAP Coordinator, “because we know how important this support is for so many families.” Jill Daugherty and her family are very thankful for the POFAP fund. At five months of age, her son, Eric, was diagnosed with a brain tumour. A year of chemotherapy reduced but couldn’t completely remove the tumour. He then developed acute leukemia and endured five cycles of chemotherapy. A bone marrow transplant is his only hope for a long-term cure. The family lives in Kingston, Ontario, and most of Eric’s care has been at Children’s Hospital of Eastern Ontario in Ottawa. “I’m fortunate,” says Jill, “I have a family close by to help care for my five-year-old daughter when I’m with Eric at the hospital. Still, I’m only able to do occasional part time work because Eric frequently develops fevers and I never know when we’ll have to pick up and go to the hospital. When you lose one income, you suddenly realize how quickly small expenses add up. POFAP helped…it takes just a bit of stress out of a very stressful situation. You don’t need money worries on top of everything else.” Thanks to the remarkable support of so many people, this year has been one of incredible growth in terms of our fundraising goals. Our focus has been to develop a strong fundraising program and to execute the best strategies to achieve our goals. While we will continue to rely heavily on government funding for our core programs, by supplementing those resources, we know that we can do so much more. Much of POGO’s success rests with our ability to form strong, strategic relationships with many individuals, groups and organizations across the province and beyond. Likewise, our fundraising efforts depend on building solid partnerships with people who are interested in supporting our work. I am pleased to say that this is an area where we have made significant progress over this past year. The POGO Childhood Cancer Charitable Council - a group of major donors who volunteer their time to solicit major gifts for POGO - has had a very successful first year. Through their personal financial contributions, their fundraising efforts and support of fundraising events, such as the annual POGO Gala, they helped to sustain POGO’s Pediatric Oncology Financial Assistance Program (POFAP), and the vital work of POGO’s Research Unit (PRU). Our 2004 fundraising Gala was a tremendous success, raising $165,000. We had remarkable sponsor support and our volunteers were phenomenal in helping to organize the event and sell tickets. I would like to extend a special note of thanks to Merrill Lynch for their generosity as the event’s presenting sponsor. In 2004, POGO launched an ambitious $9 million fundraising campaign focused on two priorities: the Pediatric Oncology Financial Assistance Program and the POGO Research Unit. Two years later, we have raised almost half of this goal. I was delighted to contribute my $5 million collection of vintage guitars and amplifiers to the campaign goal. The money raised from the sale of these pieces (over $3.2 million CDN to date) will form an endowment fund to support POGO’s efforts in care, education and research. With the continued generosity and support of our donors we are confident that this campaign will be a success. As we move into a new year, we are truly excited about the possibilities ahead. This is an organization with a remarkable track record of proven results for a very vulnerable population - children. We are enormously grateful to all of our supporters for their commitment to helping POGO. Every dollar raised, and every caring hand extended helps to ensure that children with cancer, their families, and childhood cancer survivors, receive the care and caring that they deserve. 2004-2005 HIGHLIGHTS 2004-2005 HIGHLIGHTS • The POGO Young Leadership Connection raised pledges totaling over $100,000 09 • Over 300 pediatric oncology professionals, from Canada, the United States and Europe, attended the 2004 POGO Symposium, “Difficult Beginnings - Cancer in Infancy” • At the request of the Ministry of Health and Long-Term Care, POGO developed a five-year Provincial Pediatric Oncology Plan for childhood cancer control in Ontario • A new Provincial Coordinator was recruited to facilitate the provincial expansion of POGO’s Successful Academic & Vocational Transition Initiative (SAVTI) • POGO assumed the administration and support of the Pediatric Interlink Nursing Program for Ontario and hired a provincial program coordinator • POGO’s fundraising efforts generated over $600,000 for the Pediatric Oncology Financial Assistance Program (POFAP) and the POGO Research Unit (PRU); a 25% increase over the previous year 10
We have achieved so much… there is still so much to do Thank you for your ongoing dedication This has been an intense and remarkable year for POGO. I am in awe of, and thankful for, the enormous will and commitment of a multitude of people. As mentioned elsewhere in this report, one of our most important tasks this past year was to develop a five-year Provincial Pediatric Oncology Plan for the Ministry of Health & Long-Term Care. More than 200 people from every corner of the Ontario pediatric oncology care spectrum came together, with cancer survivors and families to contribute their expertise and experience to the process. We share a renewed sense of purpose and optimism for having been able to contribute to the future of cancer care for the children and families of Ontario. As survival rates for children who have experienced cancer grow, our POGONIS data registry is becoming a critical source of information about the health issues that can result from the treatment associated with some childhood cancers. The tremendous news that we have been granted a ‘45.1’ organizational status under Ontario’s privacy legislation (along with only three other organizations in the province) means that we will now be able to use this data in a way that will allow us to better understand many aspects of childhood cancer. As we plan ahead, the work of POGO’s Research Unit will become increasingly important. An external review by a group of distinguished experts last fall confirmed that POGO is uniquely placed to undertake population-based research that will give us more insight into cancer incidence, types and recurrences relative to pediatric age group and geographical location. This research will give us insights into the causes of childhood cancer; the health and service needs of affected 11 Dr. Mark Greenberg POGO Chair in Childhood Cancer Control/Medical Director families; and the economic and financial aspects of cancer as they relate to the families and to society at large. A study of quality of life issues, so central to children with this disease, is also high on our research agenda. And there will be a continued emphasis on learning more about the ‘late effects’ of childhood cancer, so that we can plan ahead for survivors’ needs. We anticipate that the work of our Research Fellows will provide the Research Unit with additional valuable information. For example, Dr. Caroline Roncadin, POGO’s first Research Fellow, recently completed her study on “Neurocognitive Outcomes in Children with Down Syndrome who have been treated for Leukemia”. Leukemia treatment often results in children having negative late effects on their neurocognitive development. While the incidence of Leukemia is disproportionately higher in children with Down Syndrome, this is one of the first studies to be conducted with respect to the neurocognitive outcomes of this population. An area of concern for all of us is the fact that adolescents and young adults have not shown the same dramatic improvements in survival as younger children. While some of the reasons have to do with the kinds of cancer they get, others have to do with a system of care that does not serve them well. We need to understand much more about the challenges unique to this age group, and we hope that a series of studies, in collaboration with Cancer Care Ontario, will provide new insights that will guide future resource allocation and service planning. All of these research and study initiatives will help us to identify treatment and service requirements so that resources are directed where they are most needed. We have achieved so much, but there is still so much to do. We must improve the systems we have in place to speed diagnosis and therapy so that we can get kids through as quickly as possible with as much support as possible. Our motivation is strong and, with the continued commitment and support of so many people, I have no doubt that we will succeed. POGO BOARD OF DIRECTORS President: Dr. Ronald Barr Chief of Service, Pediatric Hematology/Oncology Children’s Hospital, Hamilton Health Sciences Treasurer: Dr. Marianna Silva Head, Division of Pediatric Hematology/Oncology Kingston General Hospital Secretary: Ms. Judy Van Clieaf Child Health Services Director The Hospital for Sick Children Invitees: Dr. Corin Greenberg Executive Director Pediatric Oncology Group of Ontario ADVISORY COUNCIL Ms. Patti Bambury POGO Satellite Clinic Coordinator Children’s Out-Patient Clinic Grand River Hospital Dr. Michael Leaker Pediatric Hematologist/Oncologist Children’s Hospital of Western Ontario POGO STAFF LISTING Executive Director Dr. Corin Greenberg cgreenberg@pogo.ca 416-592-1232 ext. 223 Medical Director Dr. Mark Greenberg mgreenberg@pogo.ca 416-592-1232 ext. 259 Administrative Assistants Helen Craig hcraig@pogo.ca 416-592-1232 ext. 230 Susan Grace sgrace@pogo.ca 416-592-1232 ext. 250 Marlice Simon msimon@pogo.ca 416-592-1232 ext. 227 Tami Sterling tsterling@pogo.ca 416-592-1232 ext. 247 Senior Associate, Research & Planning, & Co-Privacy Officer Madeline Riehl mriehl@pogo.ca 416-592-1232 ext. 234 Dr. Mark Greenberg Medical Director Pediatric Oncology Group of Ontario POGO Chair in Childhood Cancer Control University of Toronto Members: Dr. Maru Barrera Child/Health Psychologist The Hospital for Sick Children Dr. Victor Blanchette Chief, Division of Haematology/Oncology The Hospital for Sick Children Ms. Marilyn Cassidy Pediatric Interlink Nurse Consultant Interlink Community Cancer Nurses/ Children’s Hospital of Eastern Ontario Jason Campbell Survivor Lynne Bridgman-Cleghorn Parent Ms. Carolyn Kennelly Operations Director Oncology/Medical Day Unit Patients Service Unit Children’s Hospital of Eastern Ontario Epidemiologist Dr. Mohammed Agha magha@pogo.ca 416-592-1232 ext. 226 Database Administrator & Research Assistant, & Co-Privacy Officer Bruna DiMonte bdimonte@pogo.ca 416-592-1232 ext. 224 Clinical Programs Coordinator Lesley Collins lcollins@pogo.ca 416-592-1232 ext. 222 POFAP Coordinator Bill Frid bfrid@pogo.ca 416-592-1232 ext. 253 POGO Symposium Coordinator Susan Kuczynski skuczynski@pogo.ca 416-592-1232 POGO Conference & Educational Events Coordinator Gillian Lachance glachance@pogo.ca 416-592-1232 ext. 237 Managing Director, Development & Strategy Vanessa Yakobson vyakobson@pogo.ca 416-592-1232 ext. 225 Development Officer Mindy Webber mwebber@pogo.ca 416-592-1232 ext. 233 Development Coordinator Erika Empy eempy@pogo.ca 416-592-1232 ext. 252 SAVTI Provincial Coordinator Barbara Dyce bdyce@pogo.ca 416-592-1232 ext. 255 Health Data Analyst Linda Turner lturner@pogo.ca 416-592-1232 ext. 248 Comptroller Richard Smith rsmith@pogo.ca 416-592-1232 ext. 240 Ms. Mary Jo Decourcy Pediatric Oncology Nurse Practitioner Children’s Hospital of Western Ontario Dr. Jacqueline Halton Chief, Division of Hematology/Oncology Children’s Hospital of Eastern Ontario Ms. Cathy Humphreys Child Life Specialist Children’s Hospital, Hamilton Health Sciences Dr. Lawrence Jardine Head, Section of Paediatric Haematology/Oncology Children’s Hospital of Western Ontario Dr. Brenda Spiegler Pediatric Neuropsychologist The Hospital for Sick Children Dr. Mark Bernstein Chief of Service Hematology/Oncology Ste. Justine Hospital Ms. Susan Posgate Oncology Clinic Nurse McMaster Children’s Hospital, Hamilton Health Sciences IS Manager Husein Patel hpatel@pogo.ca 416-592-1232 ext. 231 Students Andrea Craig acraig@pogo.ca 416-592-1232 ext. 246 Summer Students Maya Fowlie mfowlie@pogo.ca 416-592-1232 Research Fellows Iris Epstein iepstein@pogo.ca 416-592-1232 ext. 229 Dr. Caroline Roncadin croncadin@pogo.ca 416-592-1232 12
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