Celebrating - Hemophilia.ca AR 2013 for the Web.pdf · Celebrating YEARS CHS AR 2013 ... bleeding disorders and ultimately to find a cure. ... A number of innovative clotting factor

2013ANNUALREPORT

Celebrating

YEARS

CHS AR 2013 FINAL_Layout 1 2014-05-14 10:03 AM Page 1

C A N A D I A N H E M O P H I L I A S O C I E T Y 2 0 1 3 A N N U A L R E P O R T

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� Mid 1960s to mid 1970s A period of optimism. Moreeffective forms of treatmentwere discovered, ending thelong and grueling time inhospital. When a person had a bleed, he went to the OUT-PATIENT CLINIC and twohours later he was back home!What a change from the 5- to7-day stay at the hospital fortreating each bleeding episode.

� Mid 1970s to late 1980sTreatments could now beadministered at HOME.Freedom at last! Sadly theproducts were oftencontaminated with HIV and hepatitis C. We will always remember this as the era of Canada’s tainted blood tragedy.

In h

osp

ital

Self

-infu

sio

n

� Early 1950s to mid 1960sTransfusions of fresh frozenplasma and, for many, one week out of four tied to a HOSPITAL bed.

Ho

me

care

Out

-pat

ient

clin

ic

� 1990s to now – Treatmentsproducts were made safe andprophylaxis was introduced.Parents are now infusing theirchildren up to three times aweek to prevent bleeds. Thismade life so much easier forfamilies. Today, children asyoung as seven years old goto summer camp where theylearn to self-infuse. What animpressive development!

Looking back

at the 60th

anniversary

of the Canadian

Hemophilia

Society, it seems

appropriate

to present

an overview of

the progress

in care and

treatment made

possible by

research over

the years.

1953–

2013

FRANK SCHNABEL —CHS FOUNDER



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OurmissionThe Canadian Hemophilia Society is committed to improve the health and quality of life of all people with inherited bleeding disorders and ultimately to find a cure.

OurvisionA world free from the pain and suffering of inherited bleeding disorders.



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In 1953, a young man with severe hemophilia named FrankSchnabel, pictured on the cover of this annual report, and hisphysician, founded the Canadian Hemophilia Society with the

goals of raising awareness about inherited bleeding disorders,improving care and ultimately finding a cure. As the CHS’ 60th anniversary year ends, we can say with confidence thatincredible progress has been made to reaching those goals.

A secure supply of safe blood products and their recombinantalternatives is available to treat all types of inherited bleedingdisorders.

A number of innovative clotting factor concentrates are in late-stageclinical trials to treat hemophilia A and B, and von Willebrand disease.When approved for use, they will offer new ways to improve careand quality of life.

A gene therapy treatment is in early-stage clinical trials. For the firsttime, we can truly say that a cure is just over the horizon.

The CHS has long been a proponent of access to the safest andmost effective treatment products for people with inherited bleedingdisorders. This focus goes back to the 1970s and lasted throughoutthe horrific period of HIV and hepatitis contamination of the bloodsupply in the 1980s and the ensuing Royal Commission of Inquiry onthe Blood System in Canada in the 1990s, which resulted insignificant reforms. The CHS’ advocacy and vigilance wererecognized in 2013 when Canadian Blood Services (CBS) awardedthe CHS a Lifetime Achievement Award for its prominent role inworking to promote a safe and secure supply of blood and bloodproducts for all Canadians.

The CHS has continued the tradition, started 60 years ago, of closecollaboration between patients and their families, and the healthcare providers in Canada’s network of bleeding disorder treatmentcentres.

While care and treatment have improved immensely over time, welive in an era of health funding constraints. With the goal ofmaintaining and even improving care, the CHS in 2013 began anassessment of the human and physical resources in the network oftreatment centres across the country. It is our firm belief that strong


well-supported multidisciplinary teams provide quality care, and moreover that this qualitycare is cost-effective in the long term. Today, people with inherited bleeding disorders whoreceive optimal care can live long lives and be fully productive members of society. The CHS iscommitted to supporting the health care providers who are so important to our community.

Another pillar of our mission is research. Since 1989 the CHS has been investing in basic andclinical research to improve care and contribute to finding a cure. In 2013, the CHS addednew research programs to promote knowledge acquisition and exchange in the fields ofnursing, physiotherapy and social work.

While we are justifiably proud of what we have achieved at home, we are painfully aware thatprogress in the care and treatment of inherited bleeding disorders has not reached all cornersof the globe. For example, close to three-quarters of world citizens with hemophilia A and Breceive little or no care, and die at a young age after hard, pain-filled lives. The CHS is astrong supporter of the work of the World Federation of Hemophilia (WFH) whose vision isTreatment for All. In 2013, after a dozen years of work, the CHS, CBS and WFH were able toannounce the success of Project Recovery, whereby surplus blood components fromCanadian donors are transformed into factor VIII concentrates to be supplied, free of charge,to patients in the developing world through WFH’s Humanitarian Aid Program. It is estimatedthat Project Recovery will provide enough factor VIII to treat 5,000 to 10,000 painful,debilitating joint hemorrhages each year. This is a world first and will serve as a model forother countries.

In 2013, the CHS began a twinning partnership with the Hemophilia Society of Bangladeshwith the goal of helping the Bangladeshis build their organizational capacity and becomemore effective advocates for their members. Meanwhile our Quebec Chapter continues itstwinning relationship with the Nicaraguan Hemophilia Association, and our Ontario Chapterhas embarked on a new twinning partnership with the Tanzanian Hemophilia Society.

Finally, we would like to thank all our volunteers whose hard work makes these achievements areality, and our generous donors, large and small, without whom we would not exist.


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David Page, national executive directorCraig Upshaw, president


C A N A D I A N H E M O P H I L I A S O C I E T Y 2 0 1 3 A N N U A L R E P O R TC A N A D I A N H E M O P H I L I A S O C I E T Y 2 0 1 3 A N N U A L R E P O R T

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Founded in 1953, the Canadian Hemophilia Society (CHS) is a national voluntary health charity.

The CHS is affiliated with the World Federation of Hemophilia,which is officially recognized by the World Health Organization.

The CHS works in collaboration with health care specialists inCanada’s 26 bleeding disorder treatment centres, the bloodsystem operators (Canadian Blood Services and Héma-Québec),the Network of Rare Blood Disorder Organizations, the hepatitisC community, the AIDS community, and others who share ourcommon interests.

60 years of dedication from volunteers and staff

In 2013, the CHS could count on the help of its 300 active volunteers and 20 staff across the country



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For 60 years, the CHS has been committed to helping the one in 100 Canadians carrying the gene of an inheritedbleeding disorder…

� More than 35,000 of them have symptoms severe enough to require medical care.Yet many have not been properly diagnosed.

� There are no cures for inherited bleeding disorders. They are lifelong conditions.

� Effective treatment is available for those diagnosed. Left untreated, however,bleeding disorders are life-threatening.

� Blood products, their recombinant substitutes and other drugs are effective intreating people with bleeding disorders, but they are not a cure.

� The Canadian Hemophilia Society is active in ensuring the safety of the bloodsupply in Canada through constant vigilance and monitoring for all Canadians.

The inherited bleeding disorders are:

hemophilia A and B

von Willebrand disease

rare factor deficiencies

platelet function disorders

To learn more about inherited bleeding disorders, please go to

www.hemophilia.ca/en/bleeding-disorders.



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60 years of high quality services offered topeople with inherited bleeding disorders

The quantity and quality of services offered by the CHS would not be possible without our invaluablepartnerships.

Over the past 60 years, the CHS has teamed up with the health care professionals at the comprehensive careclinics, generous partners in the pharmaceutical industry,corporate and individual donors and volunteers to achieveits goals in:

Care and treatment

Support and education

Awareness

Research

Safe and secure blood supply


In 2013:

� We hosted Rendez-vous 2013, a medical and scientific symposiumwhich included sessions on medicaland psychosocial perspectives,providing physicians, other healthcare providers and patients with themost recent knowledge on careand treatment of inherited bleeding disorders.

� We supported annual meetings of thephysiotherapists, nurses and social workersassociated with the 26 bleeding disorder treatmentcentres across Canada to help maintain standards ofcare across the country and to keep the medicalcommunity abreast of state-of-the-art developmentsin the care and treatment of people with bleedingdisorders.

� We developed a centre assessment proceduresupported by the Association of Hemophilia ClinicDirectors of Canada to optimize care for patientstreated in the Canadian bleeding disorder treatmentcentres. Questionnaires were mailed to patients fromeach participating centre and interviews withcomprehensive care team staff were conducted inseveral provinces; more clinics will be visited in 2014.


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Care and treatmentACHIEVE OPTIMAL COMPREHENSIVE CARE FOR ALL PEOPLE WITH INHERITED BLEEDINGDISORDERS.

From left to right: Christine Keilback, Dr. Rivard, David Page, Dr. Carcaoand Dr. Iorio participating in the debate Less frequent infusions or highertrough levels? at Rendez-vous 2013.

The CHS has worked with determination for 60 years to build and maintain a network of treatment centres for bleeding disorders serving people in everyprovince. Proper care and treatment for people with inherited bleeding disorderswould not be possible without the expertise of a multidisciplinary team of healthcare professionals: physicians, nurses, physiotherapists, social workers and otherspecialists, such as psychologists and gynaecologists.

It was a specialhonour to hostRendez-vous 2013 inthe year that the CHScelebrated 60 yearsof service to theinherited bleedingdisorder community.

– CHRISTINE KEILBACK,EXECUTIVE DIRECTOR OF THE

CHS MANITOBA CHAPTER.



In 60 years, the CHS has produced an impressive number ofpublications and videos that have been repeatedly praisedwithin and outside Canadian borders. Life-changingworkshops and educational meetings organized by the CHS have also marked the past six decades.

Support and educationPROVIDE EFFECTIVE DELIVERY OF INFORMATION AND SUPPORTTO PATIENTS AND THEIR FAMILIES ACROSS CANADA IN BOTHENGLISH AND FRENCH.

In 2013:

� We distributed three issues of our newsmagazineHemophilia Today to keep the bleeding disorder communitywell informed.

� Parents Empowering Parents (PEP) workshops weredelivered in Manitoba, Alberta and Nova Scotia incollaboration with trained PEP leaders to increase skills andknowledge of parents raising a child with a bleedingdisorder and to encourage peer support among families withchildren newly diagnosed.

� The CHS James Kreppner Memorial Scholarship and BursaryProgram granted four $5,000 awards: two scholarshipsbased on academic merit, one bursary based on financialneed and one mature student bursary to increase thenumber of people affected by bleeding disorders pursuingpost-secondary education and vocational training.

My own experiences with hemophilia and the great losses that my family and I have endureddue to the tainted blood tragedy have given me the abilities and strengths needed to becomea good social worker and to ultimately assist in creating a bright and healthy future for ourvery own hemophilia community.

– A RECIPIENT OF A CHS JAMES KREPPNER MEMORIAL SCHOLARSHIP

Canadian Hemophilia SocietyServing the Bleeding Disorder Community

Hem philiaToday A U G U S T 2 0 1 3 | V O L U M E 4 8 N O 2

A show of hands at Rendez-vous2013

in Winnipeg


Hem philiaToday N O V E M B E R 2 0 1 3 | V O L U M E 4 8 N O 3

CongratulationsTHE CANADIAN HEMOPHILIA SOCIETY RECEIVES

THE CANADIAN BLOOD SERVICES 2013 LIFETIME ACHIEVEMENT AWARD

ALSO: PROJECT RECOVERY, a world-first initiative advanced by the Canadian Hemophilia Society becomes reality


Hem philiaToday M A R C H 2 0 1 3 | V O L U M E 4 8 N O 1

PASSPORT TO WELL-BEING ▪ FACTORFIRST ▪ CODEROUGE ▪ STEP BY STEP ▪ SCHOLARSHIPS ▪ HEMOPHILIA RESEARCH MILLION DOLLAR CLUB ▪ TWINNING ▪ DREAM OF A CURERESEARCH PROGRAM ▪ HELP STOP THE BLEEDING ▪ A BANDAGE IS NOT ENOUGH ▪ COMMEMORATION OF THE TAINTED BLOOD TRAGEDY ▪ COMPREHENSIVE CARE STANDARDS• HEPATITIS C AND HIV COMPENSATION ▪ NATIONAL YOUTH COMMITTEE ▪ FAMILY INHIBITOR WEEKENDS ▪ VWD AWARENESS CAMPAIGN ▪ PARENTS EMPOWERING PARENTS▪ RED WHITE & YOU ▪ RENDEZ-VOUS ▪ RARE FACTOR DEFICIENCY BOOKLETS ▪ ALLABOUT HEMOPHILIA ▪ ALL ABOUT CARRIERS ▪ SUMMER CAMPS ▪ PAIN – THE FIFTH VITALSIGN • WORLD HEMOPHILIA DAY ▪ AGEING PROGRAM ▪ CARE UNTIL CURE ▪ HEMOSTASISFELLOWSHIP ▪ NATIONAL VOLUNTEER AWARDS ▪ REPORT CARDS ON CANADA’S BLOODSYSTEM ▪ JUST THE GUYS ▪ PASSPORT TO WELL-BEING ▪ FACTORFIRST ▪ CODEROUGE▪ STEP BY STEP ▪ SCHOLARSHIPS ▪ HEMOPHILIA RESEARCH MILLION DOLLAR CLUB TWINNING ▪ DREAM OF A CURE RESEARCH PROGRAM ▪ HELP STOP THE BLEEDING ▪ ABANDAGE IS NOT ENOUGH ▪ COMMEMORATION OF THE TAINTED BLOOD TRAGEDY COMPREHENSIVE CARE STANDARDS ▪ HEPATITIS C AND HIV COMPENSATION ▪ NATIONAL YOUTH COMMITTEE ▪ FAMILY INHIBITOR WEEKENDS ▪ VWD AWARENESS CAMPAIGN ▪ PARENTS EMPOWERING PARENTS ▪ RED WHITE & YOU ▪ RENDEZ-VOUS ▪ RAREFACTOR DEFICIENCY BOOKLETS ▪ ALL ABOUT HEMOPHILIA ▪ ALL ABOUT CARRIERS SUMMER CAMPS ▪ PAIN – THE FIFTH VITAL SIGN ▪ WORLD HEMOPHILIA DAY ▪ AGEINGPROGRAM ▪ CARE UNTIL CURE ▪ HEMOSTASIS FELLOWSHIP ▪ NATIONAL VOLUNTEERAWARDS ▪ REPORT CARDS ON CANADA’S BLOOD SYSTEM ▪ JUST THE GUYS ▪ DAY ▪ AGEING PROGRAM ▪ CARE UNTIL CURE • HEMOSTASIS FELLOWSHIP ▪ NATIONAL VOLUNTEER AWARDS ▪ REPORT CARDS ON CANADA’S BLOOD SYSTEM ▪ JUST THE GUYS PASSPORT TO WELL-BEING ▪ FACTORFIRST ▪ CODEROUGE ▪ STEP BY STEP ▪ SCHOLARSHIPS ▪ HEMOPHILIA RESEARCH MILLION DOLLAR CLUB ▪ TWINNING ▪ DREAM OF A CURERESEARCH PROGRAM ▪ HELP STOP THE BLEEDING ▪ A BANDAGE IS NOT ENOUGH ▪ COMMEMORATION OF THE TAINTED BLOOD TRAGEDY ▪ COMPREHENSIVE CARE STANDARDS▪ HEPATITIS C AND HIV COMPENSATION ▪ NATIONAL YOUTH COMMITTEE ▪ FAMILY INHIBITOR WEEKENDS ▪ VWD AWARENESS CAMPAIGN ▪ PARENTS EMPOWERING PARENTS▪ RED WHITE & YOU ▪ RENDEZ-VOUS • RARE FACTOR DEFICIENCY BOOKLETS ▪ ALLABOUT HEMOPHILIA ▪ ALL ABOUT CARRIERS ▪ SUMMER CAMPS ▪ PAIN – THE FIFTH VITALSIGN ▪ WORLD HEMOPHILIA DAY ▪ AGEING PROGRAM ▪ CARE UNTIL CURE ▪ HEMOSTASIS

The Canadian Hemophilia Society

Y E A R S

celebrat ing

10



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In 2013:

� In April, World Hemophilia Day was onceagain a great occasion to raise publicawareness. Activities were held across thecountry to reach out and educate peoplepotentially suffering from a bleeding disorder.On this special occasion, the CN Tower inToronto was lit up in red.

� A large number of awareness activities wereorganized by CODErouge ambassadors acrossthe country. Among other activities, we wouldlike to highlight the presence of CODErougebooths at two different Alberta Woman’sShows reaching 3,000 women and at thePrince Edward Island Marathon reaching3,000 attendees (participants, families and friends).

AwarenessRAISE AWARENESS AMONG PEOPLE WITH INHERITED BLEEDING DISORDERS, THEIR IMMEDIATECOMMUNITIES AND HEALTH CARE PROVIDERS.

For 60 years, the CHS and its chapters havespared no effort in raising awareness in thegeneral population and with health careproviders who may come into contact withpeople with inherited bleeding disorders.Displaying creativity and trying a variety ofactivities have been customary: golftournaments, family walks, polar bear dips,Swim for Bleeders, Mall in the Hall, Dance forLife, Culinary Gala Dinner, and many more.



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The CHS provides clinical and research fellowshipsand funds to leading Canadian researchers working in the field of bleeding disorders.

Over the past 23 years, thanks to the HemophiliaResearch Million Dollar Club endowment, generousindividual donors, committed corporate sponsors andCHS chapters and regions across the country, theCHS has invested close to seven million dollars inresearch in Canada.

In 2013, the CHS funded eight research projects throughfour different research programs:

� The CHS Dream of a Cure Research Program

� The CHS/Pfizer Care until Cure Research Program

� The CHS/Association of Hemophilia Clinic Directors ofCanada/CSL Behring Hemostasis Fellowship Program

� The CHS/Baxter Canada Inherited Bleeding DisordersFellowship Program for Nurses and Allied Health CareProfessionals

ResearchPROMOTE AND FUND RESEARCH TO IMPROVE TREATMENTAND ULTIMATELY TO FIND A CURE.

The CHS has an unconditionalcommitment towards research.

Because research means theworld to our community.

Because research means hope.

Hope for a better quality of life.And hope for a cure.

Detailed descriptions of the funded research projects areavailable at www.hemophilia.ca/en/research.

I am optimistic that my project will provide better understanding of what causes Type 3von Willebrand disease and may help create personal treatment options for patients.

– MACKENZIE BOWMAN, PH.D., QUEEN’S UNIVERSITY, KINGSTON, ONTARIO



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In 2013:

� To ensure all Canadians have access to safe blood productsin adequate supply, we continued to provide the voice ofrecipients on Health Canada, Canadian Blood Services (CBS),Héma-Québec and provincial government blood advisorycommittees.

� To top off an unforgettable 60th anniversary year, the CHS was presented with the Lifetime Achievement Awardfrom Canadian Blood Services for its prominent role inworking to promote a safe and secure supply of blood and blood products for all Canadians.

Safe and secure blood supplyADVOCATE FOR ACCESS TO A SECURE SUPPLY OF THE SAFEST AND MOST EFFICACIOUSTHERAPIES FOR TREATMENT OF INHERITED BLEEDING DISORDERS.

The CHScontinues toensure thatmatters of safetyand supply are atthe forefront ofour decision-making. Itsconstantvigilance, focus on safety, andcommitment to ensuringCanada’s bloodtragedy is neverforgotten, hashelped define theway CanadianBlood Servicesoperates.

- EXCERPT FROM CBS’STATEMENT WHEN

PRESENTING THE AWARD

TO THE CHS

The CHS is the leading patient organization in Canada to independently monitor thesafety and supply of blood and blood products within the Canadian blood system.

In 2007, the CHS launched a program to commemoratethe tainted blood tragedy... lest we forget. As part ofthis initiative, commemorative Trees of Life have beenplanted each year since.

Commemorationof theTainted Blood

Tragedy



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Youth are the future of any organization. After 60 years of existence, the CHS has recognized thevalue of past experience coupled with the importanceof subsequent leadership. This is why we strive toengage the young members of our community to joinin and participate in the vital growth and developmentof our community and ultimately to ensure thesustainability of the organization.

In 2013, this promising group participed in a leadershipworkshop which provided them with tips to increase theirleadership skills, learn how to step outside of their comfortzone when dealing with mental and emotional health issuesand highlight the importance of taking ownership of theirbleeding disorder.

Future leaders

We often tend tooverlook mental healthconditions but I ampleased they wereaddressed during ourworkshop. I learned thatit is important to beaware of the mentalhealth issues associatedwith having a bleedingdisorder and the waysone can learn to copewith them.

– A YOUTH WHO ATTENDED THE

2013 CHS YOUTH WORKSHOP


The CHS, its provincial chapters and Canadian hemophilia treatment centres are world leadersin twinning projects, having participated in 14 twinning partnerships over the last decade.By linking emerging and established hemophilia organizations and treatment centres, theTwinning Program has tremendously improved treatment and care for people with hemophiliaaround the world and the CHS is proud to have been instrumental in that success.


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International commitment

Canada’s role at the international level is invaluable.

But, in 2013, the Canadian Hemophilia Society had an additional impact worldwide.

The CHS is at the origin of a humanitarian aid project called Project Recovery. This project turns unused blood products from Canadian Blood Services’ donors intohemophilia medicine for developing countries. It will be channeled through the WorldFederation of Hemophilia (WFH) Humanitarian Aid Program and will allow the annualtreatment of approximately 5,000 joint hemorrhages, the most common symptom ofhemophilia, in children and adults. Without such treatments, the people experiencingthese hemorrhages would endure weeks of excruciating pain and, over time, serious jointdamage leading to crippling. This is precisely what the Canadian hemophilia communityhad to go through 60 years ago when the CHS was founded and before advances in careand treatment made its mark on our community.



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60 years with the best volunteers!

2013 EXECUTIVE COMMITTEE

Craig UpshawPresident

Pam Wilton, RNPast-President

Kathy LawdayVice-President

Paul WiltonVice-President

Mylene D’FanaSecretary

Dan DoranTreasurer

The CHS relies entirely on a remarkable group of dedicated volunteers.

These volunteers are exceptional people who give countless hours to the success ofevents and programs.

In addition, our chapters do extraordinary work reaching out to the bleedingdisorder community. They organize local activities, operate children’s summer camps,keep members informed through newsletters and coordinate numerous and creativefundraising events.

Curtis BrandellBritish Columbia

Jennifer RuklicSheri SpadyAlberta

Wendy QuinnSaskatchewan

John RogaskyManitoba

Paul WiltonOntario

François LarocheQuebec

Brent BuchananRachelle Kingsler(as of September 2013)New Brunswick

Shelley MountainPrince Edward Island

Dianna CunningNova Scotia

Jeffrey JerrettNewfoundland and Labrador

2013 CHAPTER PRESIDENTS



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2013 BOARD OF DIRECTORS (From top to bottom): Jeffrey Jerrett, John Rogasky, David Page (executive director),Bruce Rempel, Tara Curwin (for Brent Buchanan), Justin Smrz (youth representative), Shelley Mountain, Jennifer Ruklic,Mylene D’Fana, Wendy Quinn, Kathy Lawday, Pam Wilton, Craig Upshaw, Dan Doran, Paul Wilton. Missing from thephoto: Dianna Cunning and Dr. Alfonso Iorio (medical advisor).



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We would like to thank the following companies, corporate foundations andemployee fund programs for their generous support. Our way of recognizingthem for their generosity is through our Corporate Philanthropy Program whichacknowledges the cumulative support given to the CHS for core programmingneeds and program sponsorship.

SAPPHIRE

PLATINUM

GOLD

BaxterNovo Nordisk

BRONZEBiogen Idec Hemophilia

Leon’sOctapharma

Opinion HealthShoppers Drug Mart

Corporate philanthropy program

We would also like to thank numerous additional donors – individuals, corporationsand foundations – who each year express their confidence in us by making substantialsupporting donations.

Working together with individuals and the corporate sector in Canada helps the CHSaccomplish its mission and vision by extending our reach and reinforcing our messages.



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Corporations that make annual gifts of $10,000 or more to the core programs of our organization are recognized as members of the BeneFACTORs Club.The Canadian Hemophilia Society recognizes their tremendous investment.

The BeneFACTORs Club

Innovators

CSL BehringNovo NordiskPfizer

Builder

Baxter

Believers

Biogen Idec HemophiliaOctapharma

Visionary

Bayer

The Canadian Hemophilia Society is proud to be a member of HealthPartners. HealthPartners is a unique collaboration of 16 of Canada’s best known national health charities, raising fundsexclusively through workplace charitable giving programs. These charities provide services toCanadians in all regions of our country

Member organizations share two primary goals:

Research: Supporting medical research toward improved treatment and ultimately a cure fordebilitating diseases.

Programs: Sponsoring education as well as prevention efforts and services that assist Canadiansliving with disease.

Partnerships

The CHS is fortunate to be surrounded by remarkable partners helping us to fulfill our mission.

▪ Association of Hemophilia Clinic Directors of Canada (AHCDC)▪ Canadian Association of Nurses in Hemophilia Care (CANHC)▪ Canadian Physiotherapists in Hemophilia Care (CPHC)▪ Canadian Social Workers in Hemophilia Care (CSWHC)▪ World Federation of Hemophilia (WFH)



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2013 2012 ProPerty AnD reSeArCH FunD- enDowment FunD- GenerAl equiPment ContinGenCieS million million FunD FunD FunD DollAr Club DollAr Club totAl totAl $ $ $ $ $ $ $Assets Current assets Cash 1,037,568 - - - - 1,037,568 922,893Term deposits 400,000 - 200,000 - - 600,000 364,672Investments – Million Dollar Club - - - - 380,759 380,759 397,826Accounts receivable

Provincial chapters 9,194 - - 23,339 10,000 42,533 66,197General Fund - - - 50,000 - 50,000 50,000Other 81,243 - - 19,735 1,270 102,248 77,822

Prepaid expenses 161,546 - - - - 161,546 4,233 1,689,551 - 200,000 93,074 392,029 2,374,654 1,883,643

term deposits 25,607 - 800,000 - - 825,607 1,058,712

investments – million Dollar Club - - - 112,555 1,717,744 1,830,299 1,764,956

Property and equipment - 20,687 - - - 20,687 20,677 1,715,158 20,687 1,000,000 205,629 2,109,773 5,051,247 4,727,988

liabilities Current liabilities Accounts payable and

accrued liabilities 148,788 - - - - 148,788 199,923Account payable to Research Fund –

Million Dollar Club 50,000 - - - - 50,000 50,000Deferred contributions 1,334,289 - - - - 1,334,289 1,119,651 1,533,077 - - - - 1,533,077 1,369,574 Fund balances unrestricted 182,081 - - - - 182,081 38,523invested in property and equipment - 20,687 - - - 20,687 20,677internally restricted

Contingencies Fund - - 1,000,000 - - 1,000,000 1,000,000research Fund – million Dollar Club - - - 205,629 - 205,629 284,367endowment Fund – million Dollar Club - - - - 175,277 175,277 175,277

externally restricted - - - - 1,934,496 1,934,496 1,839,570 182,081 20,687 1,000,000 205,629 2,109,773 3,518,170 3,358,414 1,715,158 20,687 1,000,000 205,629 2,109,773 5,051,247 4,727,988

Canadian Hemophilia SocietyBalance SheetAs at December 31, 2013

Extract from the audited financial statements prepared by PriceWaterhouseCoopers. The complete audited financial statements are available upon request by mail or on the CHS Web site. Extract from the audited financial statements prepared by PriceWaterhouseCoopers. The complete audited financial statements are available upon request by mail or on the CHS Web site.



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2013 2012 ProPerty AnD reSeArCH FunD– enDowment FunD– GenerAl equiPment ContinGenCieS million million FunD FunD FunD DollAr Club DollAr Club totAl totAl $ $ $ $ $ $ $ balance – beginning of year 38,523 20,677 1,000,000 284,367 2,014,847 3,358,414 3,290,739 Excess of revenue over expenses

(expenses over revenue) for the year 198,741 (5,173) - (128,738) - 64,830 12,528

Endowment contributions - - - - 94,926 94,926 55,147

Investment in property and equipment (5,183) 5,183 - - - - - Transfer to Research Fund –

Million Dollar Club (50,000) - - 50,000 - - - balance – end of year 182,081 20,687 1,000,000 205,629 2,109,773 3,518,170 3,358,414

2013 2012

ProPerty AnD reSeArCH FunD- GenerAl equiPment million FunD FunD DollAr Club totAl totAl $ $ $ $ $revenue Public support 276,451 - 15,984 292,435 266,331Corporate support 1,679,308 - 11,523 1,690,831 1,975,163Investment income 31,200 - 40,633 71,833 92,183

1,986,959 - 68,140 2,055,099 2,333,677

expenses Programs 1,237,870 2,367 185,000 1,425,237 1,687,536Resource development 280,812 2,060 - 282,872 376,795Governance 77,786 - - 77,786 52,163Administration 191,750 746 11,878 204,374 204,655 1,788,218 5,173 196,878 1,990,269 2,321,149excess of revenue over expenses

(expenses over revenue) for the year 198,741 (5,173) (128,738) 64,830 12,528

Canadian Hemophilia SocietyStatement of Changes in Fund BalancesFor the year ended December 31, 2013

Canadian Hemophilia SocietyStatement of Revenue and ExpensesFor the year ended December 31, 2013

excess of revenue over expenses (expenses over revenue) for the year

Extract from the audited financial statements prepared by PriceWaterhouseCoopers. The complete audited financial statements are available upon request by mail or on the CHS Web site. Extract from the audited financial statements prepared by PriceWaterhouseCoopers. The complete audited financial statements are available upon request by mail or on the CHS Web site.



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NATIONAL STAFFDavid PageNational Executive Director

Joyce ArgallNatonal Individual Giving Manager

Hélène BourgaizeNational Director of Chapter Relations and Human Resources

Deborah Franz CurrieNational Director of Resource Development

Stéphane LemieuxChief Accountant

Rachel LeslieNational Executive Assistant

Michel LongNational Program Manager

Chantal RaymondNational Communications Manager

NATIONAL OFFICE400-1255 University StreetMontreal, Quebec H3B 3B6Tel.: 514-848-0503Toll-free: [email protected]

PROVINCIAL OFFICES

Manitoba Chapter944 Portage AvenueWinnipeg, Manitoba R3G 0R1Tel.: 204-775-8625Toll-free: [email protected]

Hemophilia Ontario501-65 Wellesley Street EToronto, Ontario M4Y 1G7Tel.: 416-972-0641Toll-free: [email protected]

Quebec Chapter514-2120 Sherbrooke St. E.Montreal, Quebec H2K 1C3Tel.: 514-848-0666Toll-free: [email protected]

To contact our 7 other provincial chapters, please consult our Web site at www.hemophilia.ca.



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Documents

Celebrating - Hemophilia.ca AR 2013 for the Web.pdf · Celebrating YEARS CHS AR 2013 ... bleeding disorders and ultimately to find a cure. ... A number of innovative clotting factor