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A N NUA L R E POR T 2012 Hope for a better tomorrow.


LYMPHOMA CANADA OUR MISSION We empower lymphoma patients and the lymphoma community through education, support, and research.

HOW WE DO IT Lymphoma affects many people, from patients, family and caregivers, to medical professionals and researchers. Lymphoma Canada connects and empowers this community. Together we are promoting early detection, finding new and better treatments, helping patients access those treatments, learning lymphoma’s causes and finding a cure.

OUR STRUCTURE We are Canada’s only national organization focused entirely on lymphoma. A registered charity, we are led by a volunteer board of directors drawn from the lymphoma community. Our board includes lymphoma patients and medical and research professionals. A small, dedicated staff brings expertise in program implementation, communications, fundraising, and administration. We are guided by expert members of a Scientific Advisory Board. Lymphoma patients across the country help organize, and participate in, education events, support groups, and online forums. Lymphoma Canada operates in both official languages, with staffed offices in Ontario and Quebec and a volunteer presence across the country.

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EXECUTIVE LETT E R

8600 Canadians will be diagnosed with lymphoma in 2013 and yet, in spite of this prevalence, an overwhelming majority of Canadians do not understand that lymphoma is a type of cancer. Lymphoma Canada works tirelessly to build awareness of and to support those affected by this prevalent disease. As we reflect on our recent accomplishments, we are proud to have made great strides towards achieving our goals. We are delighted to share, in the pages of this Report, some of the highlights of the work recently undertaken by our dedicated staff and volunteers. We expanded our patient education initiatives to include an online education program for family doctors; We launched the first comprehensive Lymphoma Patient Survey, for which we received input from 90 patients. The important and directive results of this Patient Survey will be included in our first Report Card on Lymphoma in Canada which we will release later this year; Our advocacy efforts were bolstered by the strength of the collective patient voice as we successfully convinced the Government of Ontario to join with other provinces and fund access to Rituxan (rituximab) in combination with Fludarabine-based chemotherapy for patients with a recurrence of follicular lymphoma; and, We made an unprecedented grant of $450,000 to Sunnybrook Hospital’s Odette Cancer Centre and the Princess Margaret Hospital Foundation to fund lymphoma research. No reflection on our recent accomplishments would be complete without saying thank you to the formidable Romeo De Gasperis with whom we worked to host the most significant fundraising event in Lymphoma Canada’s history in June 2012. We are sincerely grateful to Mr. De Gasperis, his family, his friends and the countless others who helped us to raise $2.25 million at a Tribute Dinner in his honour. The year ahead promises continued positive momentum. Thanks to the support of creative marketing and advertising design agency Lowe Roche, Lymphoma Canada will launch its first advertising campaign in the months ahead. This campaign is designed to educate Canadians on the signs and symptoms of lymphoma, leading to earlier diagnosis and better outcomes for patients—the greatest accomplishment of all. Thank you for supporting Lymphoma Canada.

Paul Weingarten Chair, Board of Directors

Sue Robson Executive Director

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MEDICAL COMMUNITY The early detection and diagnosis of lymphoma is critical to ensuring successful outcomes for patients. In order to facilitate early diagnosis and to help medical professionals recognize symptoms earlier, Lymphoma Canada collaborated with mdBriefCase, Canada’s foremost online continuing education provider for physicians, to develop an online continuing education course called, “The Early Detection of Lymphoma in Primary Care.” This new course, which became available at the end of June 2012, teaches physicians to review the incidence and prevalence of lymphoma in Canada, describes the clinical manifestations of lymphoma, discusses approaches to the early recognition of lymphoma in clinical practice, and focuses on the role of the primary care provider in the follow-up of patients with lymphoma. An overwhelming percentage of General Practitioners from across Canada have completed this course, and post-course survey results indicate that more physicians were likely to screen for lymphoma in a patient with persistent lymphadenopathy following completion of the course. Lymphoma Canada is committed to working to educate all groups within the lymphoma community and is working to build similar programs for nurses to be better informed about the signs and symptoms of lymphoma.

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CANADIAN ASSOCIATION OF NURSES IN ONCOLOGY AWARD In 2012, the Lymphoma Canada Award of Excellence in Patient Advocacy was awarded jointly to Patricia Murphy-Kane and Cindy Murray, both from Toronto, Ontario. Patricia, a Clinical Nurse Specialist in Palliative Care and Cindy, a Clinical Nurse Specialist in the Transfusion Clinic, both at Princess Margaret Hospital in Toronto, have been recognized for their tireless support and impactful work in advocating for early palliative care referrals for patients with lymphoma. Ms. Lorraine Martelli-Reid, President of CANO, accepted the award on behalf of Patricia and Cindy.

BENDAMUSTINE In June 2012, those living with non-Hodgkin lymphoma received positive news about another new treatment for lymphoma. A trial that included 549 patients with certain types of immune system cancers showed that patients treated with Bendamustine and Rituxan lived more than three years longer without any progression of tumours, when compared with patients treated with Rituxan and chemotherapy, currently the most commonly-used treatment for the disease. Bendamustine has recently been approved for use by Health Canada, but it will now be up to the individual provinces and territories to decide whether they will publicly-fund this drug. Lymphoma Canada is putting its advocacy efforts to work again to ensure that Canadians have access to this important and promising treatment option.

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Lymphoma Canada produced three new videos: Alive Again (to share patient stories of hope), Someone In My Family Has Cancer (a video to help explain a cancer diagnosis to children), and an educational video with Dr. Pierre Laneuville about the newly approved lymphoma treatment, Bendamustine. All three videos are available at www. youtube.com/LymphomaTV. In addition, Lymphoma Canada and its patient-centric programs were featured in an article in The Chronicle Healthcare Marketing which is distributed to 7500 managers

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and executives in the pharmaceutical, biomed, biotech and hospital services industries in Canada and profiled in New Evidence in Oncology, a magazine for healthcare clinicians that showcases scientific data, research, and perspectives from key opinion leaders in the field of oncology from around the world. Lymphoma Canada hosted the inaugural Living Well With Lymphoma Patient Education Event in Toronto on World Lymphoma Awareness Day.


JANU A RY 25, 2012

APR I L 19-21, 2012

Halton Peel Wellspring Centre, Mississauga, Ontario

Embassy Suites, Fallsview Hotel, Niagara Falls, Ontario

Patients and caregivers joined Lymphoma Canada, Wellspring Centre and special guest speaker Dr. John Kuruvilla for this informative discussion about new and novel therapies in treating lymphoma and how to make educated decisions about clinical trials.

Lymphoma Canada hosted a three-day international educational conference about chronic lymphocytic leukemia (CLL) to provide patients with up-to-date information about clinical trials, treatment options, and information about advocacy efforts as well as networking opportunities for patients and their caregivers.

LYMP H O M A 101

FEB RU A RY 1, 2012

WAT E R LO O S UPPOR T G R O U P M EE E T ING

CLL LIVE 2012

M AY 2, 2012

HopeSpring Cancer Support Centre, Waterloo, Ontario

WATERLOO SUPPORT GROUP MEEETIN G

Lymphoma Canada supported the Waterloo Group at HopeSpring Cancer Support Centre to host this evening for patients and family members. Special guest speaker for the evening was Karen Van Rassel of the Lymphoma Coalition.

HopeSpring Cancer Support Centre, Waterloo, Ontario Dr. Ronan Foley from the Juravinsky Cancer Centre spoke to patients and family members about lymphoma subtypes and new and emerging treatments.

A PR IL 1, 2012

MAY 25, 2012

North Bramalea United Church, Brampton, Ontario

Vancouver, British Columbia

An Evening of Hope provided an opportunity for lymphoma patients to share experiences with others dealing with cancer, as a patient, a caregiver or a friend. Keynote speaker and Team Canada hockey legend Paul Henderson, spoke of his experiences with cancer, and the way the lessons he learned about leadership, teamwork, and commitment during his hockey career have helped him overcome the very difficult challenges associated with fighting lymphoma.

This full-day education event was held at the Jewish Community Centre on West 41st Ave in Vancouver BC. Lymphoma Canada was a proud sponsor of this event.

“HOPE ENDURES� AN EVENING OF HOPE

LY M PHOID CA N C ER EDUCATION FORM

SEPTEMBER 15, 2012

WORLD LY MPHO M A AWA REN ESS DAY Lymphoma Canada increased the scope of its initiatives in support of World Lymphoma Awareness Day in 2012. In particular, Lymphoma Canada expanded its social media activity to engage in widespread conversation with the lymphoma community and to share information about lymphoma and education and awareness initiatives around the world.

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ROM EO D E GA S PE R I S

TRIBUTE DINNER

On June 11, 2012, the Embassy Grand Convention Centre in Toronto, Ontario played host to a remarkable event. Thanks to Toronto businessman Romeo De Gasperis, Lymphoma Canada raised $2.25 million in support of lymphoma research at a Tribute Dinner in Mr. De Gasperis’ honour. The event was attended by more than 1,200 friends, family and business associates of the De Gasperis family and others from the broader lymphoma communi ty. Mr. De Gasperis has been diagnosed with lymphoma twice, but has been cancer free for several years. Proceeds from this event enabled Lymphoma Canada to fund critical lymphatic cancer research with a grant of $450,000 to Sunnybrook Hospital’s Odette Cancer Centre and the Princess Margaret Hospital Foundation. Lymphoma Canada would like to thank Mr. De Gasperis and his family and friends for their leadership and generosity.

“We put a very ambitious fundraising goal of $1.5 million for this event and I am thrilled to say we beat it. In fact, thanks to your generosity, I’m thrilled to announce that this dinner raised $2.25 million. Thank you for supporting Lymphoma Canada.” - Romeo De Gasperis

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FUNDRAISING EVENTS APRIL 30, 2012

La Rose Men’s Hairstyling Hair-Cut-a-Thon Etobicoke, Ontario A unique fundraising event offered guests and clients an opportunity to receive professional haircuts by talented stylists and raised more than $2,000 for Lymphoma Canada.

JUNE 11, 2012

Tribute Gala in honour of Romeo De Gasperis Toronto, Ontario This extraordinary fundraising event was the largest and most successful fundraisier in Lymphoma Canada’s history. Thanks to the support of Romeo Dr Gasperis, the organization raise $2.25 million in support of lymphoma research.

JUNE 23, 2012

Jenna’s 2nd Annual Lemonade Stand Thornhill, Ontario The 2nd Annual Lemonade Stand is organized by Jenna Zaracoff and her family in memory of their father and husband, Stewart Zaracoff, who died in 2010 from Non-Hodgkin lymphoma.

AUGUST 2, 2012

Par For The Cure Golf Tournament Maple, Ontario The 2012 Par for the Cure event was a great success. We were delighted to welcome hockey legends Bob Nevin, Johnny Bower, Wilf Paiement, or Pierre “Pete” Pilote to join in the golf and celebration. As a twist on the traditional “Closest to the Hole” contest, we offered the highest bidder the opportunity to drop a bucket of balls from a helicopter and raised additional funds for lymphoma research.

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BOARD OF DIRECTORS P auL W eingaRTeR

n iCK i oZZo

a nWaR K nighT

cHair

secretarY

director

m iKe j oyCe

d R . L auRie S ehn

a my m aRaone

vice cHair

director

director

a LySSa b uRKuS R oLf

T eRRy C ReighTon

d R . h aRoLd o Lney

past cHair

director

director

j ohn S uTheRLand

L oRing g imbeL

treasurer

director

toronto , ontario

mississauga , ontario

oakville , ontario

Hamilton , ontario

toronto , ontario

mississauga , ontario

toronto , ontario

toronto , ontario

toronto , ontario

montreal , quÉbec

calgarY , alberta

SCIENTIFIC ADVISORY BOARD d R . j oe C onnoRS , Clinical Professor, University of British Columbia; md Chair, Lymphoma Tumour Group, British Columbia Cancer Agency d R . i SabeLLe b enCe -b RuCKLeR , Hematologist, Associate Professor of Medicine, Member, Blood and Marrow md fRCPC Transplant Program, Ottawa General Hospital Campus d R . S PenCeR g ibSon , Associate Professor, Manitoba Institute of Cell Biology, Department of P h d Biochemistry and Medical Genetic, University of Manitoba d R . m aRy g oSPodaRoWiCZ , Professor and Chair, Department of Radiation Oncology, University of Toronto, md fRCPC fRCR (h on ) Chief, Radiation Medicine Program, Princess Margaret Hospital d R . K eVin i mRie , Physician-in-Chief, Sunnybrook Health Sciences Centre, Vice-Chair, Education, md fRCPC Department of Medicine, University of Toronto, Professor of Medicine, University of Toronto

d R . R aLPh m. m eyeR , Director of the National Cancer Institute of Canada (NCIC) Clinical Trials Group md, fRCP(C) and Holder of the Edith Eisenhauer Chair in Clinical Cancer Research at Queen’s University

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LYMPHOMA CANADA

STAFF

S ue R obson

V aughan R eid

J an C oleman

executive director

national development manager

national office manager

T anja L oeb

T racey -A nn C urtis

C harlene R agin

director of operations and programs

regional manager , quebec

marketing and communications coordinator

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L YM P H O M A CAN ADA

DONOR RECOGNITION Lymphoma Canada thanks all our generous donors for their gifts. We are grateful to count you among the community of supporters who are making it possible for us to provide information, help, and hope to the lymphoma community across Canada.

m a j o r g i f t d o n o rs Stanley Stankiewicz Deena and Armand Reale Marion Mercier Silvio DeGasperis Michael Penny Cosmo Mannella

100+

donations Alan Szpindel Joe Achon Richard Flomen Barry Reznick Diane Brown Tony Morano Mary Gardiman Perry Cervini Louis Kavanaugh A. Paar John Miniaci Frank Antonacci Michael Fiorini Jack Winberg Aldo Gottardo Domenic Angaran Sam Ciccolini Jenny Coco Jim d’Angelis

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John Pellegrino Peter R. Walker Roberto Mangoni Larry Murray David Chui Remo D’Angelo Frank Cundari Angelo De Gasperis Peter Schut Mark Spektor Rioux Culnan Gowers Burton Lorenz Karen Beauregard Mirella Dwyer Lisette Vopni Roberta McBride Joseph Lebovic Mary Cernecca Dr. Wilf Steinberg

Gino Bellisano Jenny Coco Anne Walton Mike Schwenger Mark VanDen Noort Scott Macdonald Douglas N. Sweetapple Renee Gomes Mike Rice Leah Simon Tony Fuda Walker Pontiero Anthony DiBattista Barry Feiner Rosario P. Ruscica Eugene Varrati Dr. Michael Crump Art Saccoccia Jason Spenar Richard Gambin Alan Greenberg Peter Rizzo

Jeff Davies Blair Seeley Terri Tino Marco Muzzo Michael Ciccolini Samuel Zimmerman Francine Pomerantz Tony Pacitto Paszkiewicz Mitlyng Choi Gallagher Hughes Macdonald Loida Griffins Harper Samia Cervi Jim DeAngelis N. Totino Aldo Gottardo Nick Iozzo Benny Soscia

Abida Usman Cooper Pannolino McKean Rolf Creighton Sorial Antenucci Jackson Blair Sorial Antenucci Jackson Blair Cunningham Mongillo Bernard Murray Santelli Moore Fratia Giraudy

Hird Davis Betts Fraser Maghirang Spears Kelly McKay Allan Terry Maree Ron Parsons Frank Huot Courtenay Trudel Hadj Zoubir Nicolette Guy Maras John & Patricia Gouinlock Giancarlo Morrone Damiano Peluso Arthur Dalfen Diana


TRIBUTE DINNER Ricardo Guglietti George Frankfort Nicole Melanson Viola Walsh Kathy Bedard Lisa Gaudet John Sloan Barry Lutes Robert H. Albee Sharon Hopkins John Chessman Telesat Mark & Maria Nicoll Frances MacDonald Rebecca Frivalt Mike Coll Catena Pizzo Kim Koteff Jessica Kabbe Kronfli William Podger Ernest & Sandra Dubkowski Ruth White Juliane McTavish Elaine Burbridge Lorraine Ricard Daniella & Patrick McDonald Susan Trowbridge Peter Brauti Ronny Bourgeois Cindy Jacquard Tom & Louisa Hoy Pasqua Pizzo John Di Poce Fritz & Gisela Ziebenhaus Joe & Mafalda Donia Mary & Bill Strackbein Lisa Sarrkman Leevy Debbi Schantz Deborah McDonald Anna Holancin Tom & Gillian Gordon Richard & Diane Johnson Catherine Dennis-Brooks Leah Cavanaugh Larry Gagnier George Quesnelle Sandra Jones

Shirley Lim Peter Heilemann Geraldine Minielly Eunice J. McArthur Jim Lyle MaryAnne Dibella Jacqueline Johnstone Cynthia A. Riley Joan Ford Susan Young Steve Heilemann Kevin Moyle Charis Kelso Evelyn Stone Ross & Faye Gordon Bridget Sweeney Rick Wray Nancy Young Heather & Philip Raczynski Tony & Karen Nagy Margaret Spence Walter & Muriel Reynolds Bill & Fran Lainson Bob & Linda Flemming June Batten Mrs. Pfeiffer June Bray Linda Leggett Alf Tizzard Sarah Riley Gerhard Bos Pauline Young Karl & Anna Matla Ross Fraser Leonard & Mary Lee Karin Scotland Donald Liddle Jack Zangari Irvin Hounsome Richard & Diane Grimm Sophia & Michael Kulha Jodi Ben Linda Sielski Halton Region Police Association Darlene Morrison Julie McDonald May Bowles

Eldred Dalgarno Patricia & Pierre Champagne Excie & Wayne Miles Brenda & Clifford Loeb MaryAnne Saint Marlene Morrison Daniel Boyne Sheila Olesen Kevin Shackleton Elizabeth Potvin Deborah & Stephen Nicholas Jason French Eva Chan Irene West Samuel Cormier Remond Poirier Marthe Lavoie Elisabeth Poirier Romeo Thibodeault Marie Cadieux Louis Biourque Gery Wouellet Joanne Robineau Yvon Cormier Dave Whitton C. Peter Jean Eudes Gaudet Jacques Cyr Rosa Constabl Ronald Babineau Gilles Chasse Marc Nadeau Bill Collette Marc Albin Jean-Robert Daigle Georges Bastarache Mireille Dube Gisele Emin Murielle LeBlanc Maureen Pryzmant Eileen Blumenstein Patrick Mulcahy Elizabeth Cornacchia Deanna McTaggart Barbara Adamson Brenda Grant Mary Lynn Novak

Sol Wassermuhl Steven Menkes Garry Watchorn James Kennedy Frank Giordano Brian Wood Zayen Sarkissian Nick Manzone Dino Martelli Robert Ignagni Ray Rakic Mario Romano Massimo Arduini Paul Manchisi Victor & Bruno Tesan Marco Dicarlantonio Dr. Peter Powers James Blackhall Francoise Shore Ernestine McElroy Deirdre Duguay Denise Beaulieu Joan Squires David Beaulieu Bernice & Nate Leipcigar Shane Baghi William Daniell Imelda Esporlas-Jewer Robert Rochon Caroline Cutz Katharine Svoboda Mario Henriques Deanna McTaggart Gary Ball Antonio Pizzo Joan Hammond Patricia Hookey Frank Delorenzis Sergio Bozikovic Mike Gallagher Joe Maio Edward Sorbara Christopher Forte

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LYM P HO M A CANADA

STATEMENT OF FINANCIAL POSITION

A S AT D E C E M B E R 31, 2 012 | DE CE M BER 31, 201 | JANUARY 1, 2011

A SSETS C U R R E NT A SSE TS

EQ UIPMENT

CASH & CASH EQUIVALENTS

AMOUNTS RECEIVABLE

SALES TAX RECOVERABLE

PREPAID EXPENSES

$ 1,003,572

$ 21,914

$ 144,914

$ 47,701

$ 7,472

$ 486, 627

$ 554

$ 56,891

$ 92,954

$ 20,266

$657, 292

$ 411,127

$ 24,700

$ 94,750

$ 33, 424

$564, 001

EQUIPMENT (NOTE 4)

TOTAL 2012

DEC 31

$1, 225, 573 DEC 31

2 011 JAN 01

2 011

LIABI LI TI ES & N ET A S SETS C U R R E N T L I AB I LIT I E S

TOTAL

MEMORIAL RESEARCH FELLOWSHIP

$ 11,093

$ 75,808

$ 1,113,672

$ 25,000

$1, 225, 573

$ 52,520

$ 244,150

$ 335,622

$ 25,000

$657, 292

$ 53,788

$ 172,750

$ 312,463

$ 25,000

$564, 001

2012

UNRESTRICTED

DEC 31

DEFERRED REVENUE

DEC 31

ACCOUNTS PAYABLE & ACCRUED LIABILITIES

2 011 JAN 01

2 011

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NET A SSETS


LYMP HO M A CANADA

ALLOCATION SUM M ARY ADMIN/OVERHEAD

$ 18 3 , 76 4

FUNDRAISING

$ 5 0 7, 0 79

AWA R E N E S S

$ 2 5 0 , 78 5

E D U C AT I O N & S U P P O R T

$ 4 47, 8 76

RESEARCH

$ 5 3 7, 2 4 0

PROFESSIONAL FEES

$ 16 8 , 5 4 0

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7111 Syntex Drive, Suite 351 Mississauga, Ontario L5N 8C3 Head Office: 905.822.5135 Toll free: 1.866.659.5556 Charitable Registration Number: 87346 1040 RR0001 info@lymphoma.ca @LymphomaCanada /LymphomaCanada www.lymphoma.ca

Lymphoma Canada Annual Report 2012