2011 Annual Report
uniquely lymphoma, uniquely Canadian
To educate and support individuals with lymphoma and their networks To advocate for the best treatment and care for lymphoma patients To fund medical research to find a cure for lymphatic cancer To promote further research and new treatments in lymphoma and rapid access to new developments.
Chair and Executive Director Message
8,600 Canadians will be diagnosed with lymphoma in 2012, and in spite of its prevalence, 74% of Canadians do not know that lymphoma is a form of cancer. Lymphoma Foundation Canada was founded in 1998 with a mission to support, educate and advocate for people in the lymphoma community and to eradicate lymphatic cancers. In December 2011, our advocacy efforts were bolstered by the strength of the collective patient voice. Through a campaign in the voices of lymphoma patients, Lymphoma Foundation Canada was successful in convincing the Government of Ontario to make Rituxan in combination with Fludarabine-based chemotherapy publicly-accessible to patients with previously untreated lymphoma. This treatment course has made a significant difference for those living with the disease and helped to establish Lymphoma Foundation Canada as a strong patient advocate. We have expanded patient education efforts that increase awareness of the disease, its signs and symptoms and treatment options. As well, 2012 promises to be a year with increased support for research initiatives to help further our vision to find a cure for lymphatic cancers. Of course, to accomplish these goals requires resources, and we are delighted to welcome Tanja Loeb, Director of Operations and Programs to our staff. Further, we welcome Anwar Knight of CTV to our Board of Directors. Our staff and volunteer support will be a critical success factor for Lymphoma Foundation Canada in helping to achieve our mission. None of these accomplishments would have been possible without the support of the dedicated individuals who form part of the lymphoma community. We are pleased to share information about those accomplishments with you as we look to this past year, and remain steadfast in our focus on 2012.
Paul Weingarten Sue Robson Chair, Board of Directors Executive Director
AWARENESS & ADVOCACY
Lymphoma Foundation Canada is recognized throughout the lymphoma community as a strong patient advocate â€“ developing and offering resources for patients and their caregivers about new treatment options and protocols, and bringing patients together to speak in a strong voice about issues that affect the community as a whole.
Patient Spotlight Barry Reznick, a 56-year-old father of three in Concord, Ontario, knows the difficulties of struggling with cancer on your own. Diagnosed with non-Hodgkin follicular lymphoma in 2002, he went through many rounds of chemotherapy and radiation, coupled with Rituxan, and successfully went into remission. Unfortunately, the cancer returned and Barry found that the Ontario health system would no longer cover the cost of the Rituxan treatments. Barry partnered with Lymphoma Foundation Canada and became the public face for the lymphoma community as we successfully worked to convince the Ontario Government to fund Rituxan treatments. In December 2011, the Ontario Ministry of Health and Long-term Care announced that it would fund this important treatment for patients with lymphoma in Ontario. Lymphoma Foundation Canada is grateful to Barry and the many others who joined in our efforts to achieve this result.
Rituxan becomes available to patients in Ontario More than ten years ago, Rituxan (rituximab) was approved by Health Canada for the treatment of nonHodgkin lymphoma. Clinical trials showed that the addition of Rituxan to standard chemotherapy regimens prolonged survival and reduced the number of relapses in patients with lymphomas when compared to the use of chemotherapy alone. Until December 2011, a funding inequity in the province of Ontario meant that some patients living with lymphoma were denied funding for Rituxan treatment following a re-occurrence of cancer, in spite of the fact that other provinces funded this treatment. Following a campaign with the support of lymphoma patients from across the country, Lymphoma Foundation Canada applauded the Government of Ontarioâ€™s decision to join the rest of the country and provide publicly-funded access to Rituxan for patients with a recurrence of follicular lymphoma. This landmark success served to establish Lymphoma Foundation Canada as a strong patient advocate. We are committed to building on this success and are now turning our efforts to extend equitable-funding for Rituximab to patients with Chronic lymphocytic leukemia in Ontario as well.
Canadian Association of Nurses in Oncology Award Each year, Lymphoma Foundation Canada is proud to work with the Canadian Association of Nurses in Oncology (CANO) to recognize a Nurse whose actions support the concept of patient advocacy and decision making, and/or who promotes change within the oncology/ hematology communities.
Many patients fighting cancer, especially those receiving chemotherapy, experience low white blood cell counts, and specifically neutrophils. With too few neutrophils, a patient is at a significantly-increased risk of infection. To improve awareness about this risk, and help patients to protect themselves, Lymphoma Foundation Canada collaborated with pharmaceutical companies, the Canadian Breast Cancer Network and Myeloma Canada to develop an informative brochure about Febrile Neutropenia. This informational brochure is now available in print and at www.lymphoma.ca.
2011 Award Recipient The recipient of the Lymphoma Foundation Canada Award of Excellence in Patient Advocacy in 2011 was Nan Cox-Kennett of the Alberta Health Services in Edmonton, Alberta. Nan has been an oncology nurse for almost 20 years and helped to build the bone marrow transplant program at the Cross Cancer Institute in Edmonton, Alberta. An advanced practice nurse working with individuals diagnosed with leukemia, multiple myeloma and Lymphoma, and those post-transplant, she is keenly aware of the long and complicated journey they endure. Nanâ€™s commitment to providing complete care to her patients has helped immeasurably to reduce the burden on the patients, and often to reduce hospital readmission rates. Thank you, and congratulations Nan!
PATIENT EDUCATION AND SUPPORT
One of the most critical mandates for Lymphoma Foundation Canada is to educate patients and their caregivers about lymphoma, treatment options and support networks available to them. Lymphoma Foundation Canada proudly hosts an annual full-day patient conference in Toronto each September and presents at the Tom Baker Cancer Centreâ€™s Living With Lymphoma annual educational series in Calgary each year.
When Gus Siamandouros’ daughter, Stephanie, was first diagnosed with Lymphoma in 2009, he was paralyzed with fear. Gus turned to Lymphoma Foundation Canada for information and support for Stephanie and the rest of her family. Through the course of her treatment, Gus became an active member of the lymphoma community and has remained a valued volunteer at Lymphoma Foundation Canada events. We are delighted that Stephanie is healthy and sincerely grateful to Gus for his continued commitment to Lymphoma Foundation Canada.
Education Events Lymphoma Foundation Canada hosts patient and family education seminars and partners with other organizations to offer access to the information and networks that patients require. In 2011, those events included:
May 4, 2011
In Partnership with Lymphoma Foundation Canada, Wellwood Presents “Novel Therapies for Lymphoma” with Hematologist, Dr. Ronan Foley Wellwood Juravinski House, Hamilton, Ontario With Dr. Ronan Foley, Hematologist, Associate Professor, Director Stem Cell Lab, HHS, President Canadian Bone Marrow Transplant Group, Juravinski Cancer Centre. Waterloo Lymphoma Support Group Meeting Hope Spring Cancer Support Centre, Waterloo, Ontario Guest speaker: Kathy Sawyer, Oncology Nurse, highlighting the “Wait and See” approach to Follicular Lymphoma.
September 22, 2011
Journey With Lymphoma Dr. Everett Chalmers Regional Hospital, Auxiliary Theatre, Fredericton, NB Horizon Health Network, in partnership with Lymphoma Foundation Canada presented “A Journey With Lymphoma” with Dr. Ghadeer Anan, MBBS, FRCP(c), Medical Oncologist.
October 6, 2011
What’s New in the Treatment of Lymphoma? Wellspring Halton-Peel, Mississauga, Ontario This informative discussion series for patients was led by Dr. J Kuruvilla of Princess Margaret Hospital.
June 29, 2011
November 16, 2011
September 15, 2011
November 24, 2011
LFC and the Saskatoon Cancer Agency’s Lymphoma Education session Delta Bessborough Hotel, Saskatoon, Sask. Lymphoma Foundation Canada and Saskatoon Cancer Agency hosted this free public information session for patients, families, and friends. Dr. Ahmed Galal spoke about The Lymphoma Journey.
2011 World Lymphoma Awareness Day On World Lymphoma Awareness Day, Lymphoma Foundation Canada participated in the National Post’s Media Planet Blood Cancer Supplement. In addition, Lymphoma Foundation Canada joined the Chicago Blood Cancer Foundation and other non-profit blood cancer patient advocate organizations from around the world in the First International Radio/Internet Forum On Lymphoma. Lymphoma Foundation Canada also developed an awareness-building video featuring Lymphoma patient and comedian Daniel Stolfi, of Cancer Can’t Dance Like This and Dr. Michael Crump that aired on CTV’s Lifetime Segment.
Chemotherapy and the Cancer Journey Webinar William Osler Health Centre, Hamilton, Ontario Patients and caregivers joined Dr. Sandy Sehdev, Oncologist at a seminar supported by Lymphoma Foundation Canada and the Canadian Breast Cancer Network to learn more about the cancer journey and what to expect during treatment.
Hematology: The Transfusion of Information Ajax Convention Centre, Ajax, Ontario Lymphoma Foundation Canada participated in R.S. McLaughlin Durham Regional Cancer Centre’s 12th Annual Oncology Conference, an informative conference that provided healthcare providers with an overview of cancers of the blood, including treatment and services.
December 1, 2011
Why Me? Why Now? Why Statistics Don’t Really Matter Jewish General Hospital Hope & Cope Wellness Centre, Montreal, Quebec In partnership with the Jewish General Hospital, Lymphoma Foundation Canada hosted an informative presentation about lymphoma by Dr. Alain Bestawros for patients and caregivers.
The Lymphoma Community Lymphoma Foundation Canada’s website has become an on-line gathering place for Canadian lymphoma patients and their families and caregivers to exchange information, find support and share their thoughts, experiences, insights and ideas. Through this site, Lymphoma Foundation Canada shares information about lymphoma and the patient journey. It offers up to date information about new treatments and trials, and provides a section called “Others Like Me” through which lymphoma patients can connect with others and share their experiences in blog posts by members. Lymphoma Foundation Canada has extended its outreach through an active Facebook page and created a “Do You Know Your Nodes” Facebook Application that offers a quiz that tests of lymph nodes, the lymphatic system and lymphoma. Know Your Nodes was launched by Lymphoma Foundation Canada as a lymphoma awareness campaign to celebrate World Lymphoma Awareness Day in 2006. Today, Know Your Nodes is in over 30 countries around the world.
Please visit www.lymphoma.ca for up to date information and to join the lymphoma community.
RESEARCH & LEARNING
In 1998, the Lymphoma Research Foundation Canada established a research fellowship to support research into lymphatic cancers in Canada. Today, Lymphoma Foundation Canada proudly awards these fellowships to encourage applicants to pursue careers in lymphoma basic, translational and clinical research. Since 1998, 16 research fellowships have been awarded to facilitate and support worthy research projects. Applications are rigorously-reviewed by the Lymphoma Foundation Canada Scientific Advisory Board, a volunteer group of scientists distinguished in fields related to lymphoma research. Each project is judged based on the scientific merit of the research and the demonstrated ability of the Primary Investigator and the Primary Investigating Institution. The members of the Scientific Advisory Board review the applications independently and make their recommendation to the Lymphoma Foundation Canada Board of Directors. Lymphoma Foundation Canada Research Fellowships are awarded for two years and include $55,000 per year to cover research, travel, publication and laboratory supply costs.
In 2011, Lymphoma Foundation Canada proudly awarded its two-year fellowship to Dr. Julie Nielsen and her Supervisor, Dr. Brad Nelson, both of the BC Cancer Agency, for Julie’s research project titled, “The Mutated Lymphoma Genome: A Target for Immune Surveillance and Immunotherapy.” Dr. Nielsen holds a BSc (Biochemistry and Microbiology) from the University of Victoria (2000) and a PhD (Medical Genetics), University of British Columbia (2006). Dr. Nielsen is focused on studying the immune response to lymphoid cancers with the goal of developing immune-based treatments for lymphoma and myeloma. Her ultimate goal of this research is to initiate clinical trials of immune-based therapies for lymphoma and myeloma patients. Dr. Nelson is the Director, Research Laboratories, Distinguished Scientist and Adjunct Professor, Biochemistry and Microbiology, University of Victoria as well as Adjunct Associate Professor, Biology, University of Victoria and Associate Professor, Medical Genetics, University of British Columbia. He holds a B.Sc., University of British Columbia, 1987 and a Ph.D., University of California at Berkeley, 1991. Dr. Nelson’s lab at the University of Victoria is dedicated to the study of the immune response to cancer with the goal of developing immune-based strategies to prevent, detect and treat cancer. In collaboration with other groups, Dr. Nelson and his team are working to develop a clinical trials program to bring novel immunotherapies to patients at our centre. Dr. Nielsen provided the following update on their work to date. “Cancer results from the accumulation of genetic mutations that provide cells with abnormal growth properties. An important clinical challenge is how to therapeutically target these mutations in patients. It is known that T cells of the immune system can recognize tumour mutations and destroy abnormal cells. The goal of this project is to analyze and enhance the T cell response to common mutations found in lymphoma. In the six months since we have received funding from the Lymphoma Foundation Canada, we have been able to assess the T cell response to two mutations frequently found in lymphoma. T cells from 4 of 5 healthy donors were capable of responding to the first mutation, while T cells from 4 of 5 independent donors were capable of responding to the second mutation. We are currently performing additional studies to characterize the T cells that we have identified. We will then screen additional donors for responses to these two common mutations as well as to other mutations. Finally, we will assess responses in patients and compare the results to those from healthy donors in order to understand how to improve responses in patients. Our long-term goal is to develop personalized cancer vaccines that harness the power of the immune system to treat lymphoma.”
The Lymphoma Foundation Canada staff and volunteers provide patients in Canada with up to date information, professional and compassionate guidance, life-saving hope, and relevant answers. It is our unfailing desire to support and respond to the lymphoma community of patients, healthcare professionals, or anyone touched by this cancer and to fund research to find the cause of â€“ and ultimately a cure for â€“ lymphatic cancers. No-one should face this battle alone; together, we can do more. Lymphoma Foundation Canada is grateful to the individuals and organizations that delivered and supported our fundraising events.
In 2010, Jenna Zaracoff’s father passed away following a battle with nonHodgkin lymphoma. Her family was grief stricken. In 2011, Jenna decided to set up a lemonade stand to raise money for lymphoma research and to make her Dad proud. Many of Jenna’s friends agreed to help, and what started as a little lemonade stand grew to include baked goods, as well as Lymphoma Foundation Canada leaf motif pins and Christmas ornaments. In the days that followed, Lymphoma Foundation Canada wrote a letter to inform Jenna’s school principal and teachers at Wilshire Elementary School in Thornhill about the initiative she had taken. The principal shared Jenna’s story with the students, many of whom joined in donating to the cause. Jenna’s lemonade stand raised over $1,500 in 2011 and grew to over $5,000 in 2012. Congratulations Jenna – you are a formidable fundraiser!
Fundraising Events May 30, 2011 Simple and Elegant Taste Book Fundraiser Club La Cite, in partnership with Lea D’Antono, author of “Simple and Elegant Taste, Over 100 ways to Eat Italian at Home” donated proceeds from the sales of the cookbooks to Lymphoma Foundation Canada. June 2011 Jenna’s First Annual Lemonade Stand Thornhill, Ontario Jenna’s Lemonade Stand honours Jenna’s father, Stewart, who lost his battle with Lymphoma in 2010. This special lemonade stand includes baked goods and an information booth to help raise awareness about lymphoma. (See story above for more information about Jenna’s outstanding fundraising efforts). August 23, 2011 Lymphoma Foundation Canada Charity Golf Challenge 2011 (now called Par for The Cure) Eagle’s Nest Golf Club, Maple, Ontario This annual golf tournament is emceed by CTV’s Anwar Knight and includes contests, draws, silent auction. Par for The Cure is the second most significant annual fundraising event for Lymphoma Foundation Canada. September 23, 2011 Purple: Feast & Fashion National Arts Centre, Ottawa, Ontario Lymphoma Foundation Canada hosted this exceptional evening of outrageous fun, delicious food, and funky fashion in support of Lymphoma Foundation Canada.
October 14, 2011 3rd Annual Harvest Ball OE Banquet Hall and Conference Centre, Oakville, Ontario 2011 marked the 3rd annual Harvest Ball, a fundraiser that benefits Young Adults living with Lymphoma and Lymphoma Foundation Canada. November 24, 2011 Comedy Night Benefit Victoria Event Centre, Victoria, BC Lymphoma Foundation Canada partnered with the Positive Mental Attitude Fund to present this fabulous night of laughter and fun, with special guest Daniel Stolfi. December 10, 2011 Jean-Guy Laforest Foundation and Concorps Dance Group Support LFC Cabaret du Vieux Saint-Jean, St.-Jean-sur-Richelieu, Quebec The Jean-Guy-Laforest Foundation and the Concorps Dance Group hosted this special fundraising event in support of Lymphoma Foundation Canada for the 5th consecutive year. Proceeds from the event support research to find a cure for lymphoma.
HOW CAN I GET INVOLVED?
Regional/Support Group Development Volunteer at lymphoma educational conferences and events Create/participate/volunteer at Lymphoma Foundation Canada fundraising events in your community Contribute specialized skills to our projects Board and Committee Membership
Board of Directors Paul Weingarten - Chair Toronto, Ontario Mike Joyce - Vice-Chair Mississauga, Ontario Alyssa Burkus Rolf - Past chair Oakville, Ontario John Sutherland - Treasurer Hamilton, Ontario Nick Iozzo - Director- Secretary Toronto, Ontario
Dr. Laurie Sehn - Research Fellowship Director Vancouver, British Columbia Terry Creighton - Director Toronto, Ontario Loring Gimble - Director Calgary, Alberta Anwar Knight - Director Toronto, Ontario Amy Maraone - Director Toronto, Ontario Dr. Harold Olney - Director Montréal, Québec
Scientific Advisory Board Dr. Joe Connors, CHAIR; MD - Clinical Professor, University of British Columbia; Chair, Lymphoma Tumour Group, British Columbia Cancer Agency Dr. Isabelle Bence-Bruckler, MD FRCPC - Hematologist, Associate Professor of Medicine, Member, Blood and Marrow Transplant Program, Ottawa General Hospital Campus Dr. Spencer Gibson, PhD, Associate Professor, Manitoba Institute of Cell Biology, Department of Biochemistry and Medical Genetic, University of Manitoba Dr. Mary Gospodarowicz, MD FRCPC FRCR(Hon) Professor and Chair, Department of Radiation Oncology, University of Toronto, Chief, Radiation Medicine Program, Princess Margaret Hospital Dr. Kevin Imrie, MD FRCPC - Physician-in-Chief, Sunnybrook Health Sciences Centre, Vice-Chair, Education, Department of Medicine, University of Toronto, Professor of Medicine, University of Toronto Dr. Ralph M. Meyer, MD, FRCP(C), Director of the National Cancer Institute of Canada (NCIC) Clinical Trials Group and Holder of the Edith Eisenhauer Chair in Clinical Cancer Research at Queen’s University The Lymphoma Foundation Canada could not do what we do without the support of these exceptional professionals from the medical community and would like to thank the following people for their past service to our Scientific Advisory Board: Dr. Diponkar Banerjee, MBChB, PhD, FRCPC, Clinical Professor, Department of Laboratory Medicine and Pathology, University of British Columbia; Director, Department of Pathology and Laboratory Medicine, Vancouver Cancer Centre; Provincial Program Leader, Cancer Pathology Program, BC Cancer Dr. Brent W. Zanke, Vice-President OICR and Director, Ontario Tumour Bank
Lymphoma Foundation Canada Lymphoma Foundation Canada is the only Canadian organization uniquely dedicated to lymphoma. We provide support for those who face lymphoma and to those who undertake research in the diagnosis, treatment, and cure of lymphoma in Canada.
LFC Staff Sue Robson, Executive Director Tanja Loeb, Director of Operations and Programs Jan Coleman, National Office Manager AngĂ¨le MĂŠnard, Quebec Regional Manager
FINANCIAL HIGHLIGHTS 2011
Lymphoma Foundation Canada Financials Total Assets at year end: $ 657,292.00 Total Revenue ( including Fundraising): $ 744,504.00 Total Patient Support ( includes Education, Advocacy, and Awareness): $ 594,631.00 Total Administration ( includes Banking Fees/Insurance and other Admin): $ 126,714.00
Admin/Overhead Advocacy Chapter Development Fundraising Education & Support Professional Fees Research Awareness Website
Auditors: Grant Thornton, LLP, Suite 200, 41 Valleybrook Drive, Toronto, ON M3B 2S6 Audited statements are available upon request.
Lymphoma Foundation Canada 7111 Syntex Drive, Suite 351 Mississauga Ontario L5N 8C3 Tel./Fax: (905) 822-5135 Toll Free: 1-866-659-5556
For more information about Lymphoma Foundation Canada, or to make a donation, please visit: www.lymphoma.ca. We invite you to connect with us on Facebook (/Lymphoma Canada) and Twitter (@lymphomacanada).
Charitable registration#: 873461040RR0001
uniquely lymphoma, uniquely Canadian
Lymphoma Canada's 2011 Annual Report.