Research - Brain Tumour Foundation of Canada

Dear Friends,3Last year was a very special year for Brain Tumour Foundation of Canada. In 2012, because of you, the organizationcelebrated its 30 th year – three decades of progress as together we work towards finding a cure for brain tumourswhile improving the quality of life for those affected.As the only organization in Canada that provides dedicated services to the brain tumour community, we take ourresponsibility to meet this need seriously. By trusting in us and giving of your time and generosity, resources neededfor today and tomorrow are coming into place.In addition, it’s vital that the reach of Brain Tumour Foundation of Canada is continuously extended.This ensures everyone has access to important support and information, helping people to find hope in theface of this terrifying disease.As always, the words of those we servebest illustrate the impact of your support:“We have found it challenging to accessbrain tumour information and supportas we live in a remote area and don’thave access to the support that onecan find in bigger cities. We have beenusing technology and resources viaBrainTumour.ca and the Information Daywebinars have been very helpful. It helpsto talk and hear about other peoplegoing through the same things as us andrealizing that we are not alone.”Natasha FoyIt is with the deepest gratitude that wereflect on 2012 and its successes. Thankyou for everything you do to lift theburden of a brain tumour.Joseph MegyesiChair, Board of DirectorsSusan MarshallExecutive DirectorAs the new CEO of Brain Tumour Foundation of Canada, it is with great enthusiasm thatI look toward the future and working with everyone who contributes to making thejourney with a brain tumour one of hope. I want to give thanks to outgoing ExecutiveDirector Susan Marshall for her tireless dedication to the community and cause. Underher leadership, the national network of programs and services has grown exponentiallyand the increased capacity for brain tumour research has accelerated the work into thecauses of and cure for the disease.Carl CadoganCEOThank you as well to the incredible donors, volunteers andsupporters whose efforts make all of this work possible.Together, we will overcome this disease.

5In 2012, a special projects campaignwas launched by the board ofdirectors and leadership volunteers.These projects include:• A brain tumour registry that by 2017 will beCanada’s first and only complete source of braintumour data.Bill and Carol Deys are long-time supportersof the brain tumour community and havechosen to support the Education Awards.• Research Studentships that accelerate brain tumourresearch and encourage young scientists to pursuecareers in the neuroscience field.• Education Awards for pediatric brain tumour survivorspursuing post-secondary studies, ensuring a brighterfuture for young adults who have endured thechallenges of a brain tumour.Gilles Cayouette is a glioblastomamultiforme brain tumour survivor andhas chosen to support the ResearchStudentships.“I discovered Brain Tumour Foundation ofCanada in 2006 and have been involved eversince. When I learned that the organizationwas planning different ways to draw studentsand researchers to the field of neuroscience,I was happy to fund this promising endeavourdirectly through a studentship. I mentionedthe project to our oldest son who immediatelysaid, “Dad, how about joining forcesto fund a studentship?” My face beamedmy delight: Imagine a father (and eight-yearGBM survivor) and son team. One of theseresearch students could find a cure, and wemust do anything we can to make it happen.“We became involved with Brain TumourFoundation Canada 16 years ago when a closefriend’s daughter was diagnosed with a braintumour. Throughout the years, we’ve beeninvolved in various fundraising activitiesand enjoyed each one! Last year, when wewere presented with a few different scenariosof ways to help families and brain tumourpatients, the Education Awards struck us as aunique opportunity. It really tugged at ourheart strings to hear about the incrediblechallenges pediatric brain tumour survivorscan face and how this could impact theirfutures. Knowing we could help othersaccomplish goals we feel all young adultsshould have was important to us. In our eyes,the real heroes are the individuals and families”affected by brain tumours and theydeserve our support.”

ResearchFunding leading Canadian brain tumour research, and workingcollaboratively across North America and the globe, is a priorityfor Brain Tumour Foundation of Canada. When you give, yousupport researchers looking into the causes of and cure for thedisease, as well as quality of life challenges for those affectedby a brain tumour.In 2012, over half a million dollars was awardedin research funding. This includes eight grants, fundingfor the brain tumour registry, a $100,000 research fellowship,and critical funds for the London, Ontario-based Brain TumourTissue Bank that provides tissue samples to researchers allaround the world.Bev and Arbelle are neuroscience nursesat one of the country’s leading healthcare facilities. Their project on speakingto adolescents about their braintumour diagnosis won a Brain TumourFoundation of Canada & CanadianAssociation of Neuroscience Nursingaward for excellence in their field.Now their research findings have influenced howneuroscience nurses at their hospital work withpatients on a daily basis. Bev and Arbelle’s researchincreased awareness on the importance of identifyingand addressing any potential ethical conflictthat may arise at patient admission. This helpspatients because the nurses are now more effectiveadvocates, better anticipate needs and accessappropriate resources on patients’ behalf.“Medulloblastoma brain tumours are the leadingcause of pediatric cancer deaths in Canada. Thosechildren who do manage to survive usually have aseverely impaired quality of life due to theaggressive treatment for the disease. Strategiesare needed to improve the quality of life forfamilies of children with brain tumours, to increasesurvival rates, and to minimize the impact onhealth care systems. We try to improve treatmentsuccess by performing molecular analysis to defineprognostic and biological subgroups. Large sizesof high quality tumour samples are needed toevaluate molecular mechanisms that lead totumour formation, and this is where the BrainTumour Tissue Bank fits in. We have obtained16 tumour samples from the bank, which werean important contribution to ourbrain tumour research.”Dr. Michael Taylor, Toronto, ONYou give to changebrain tumour patient care.6

7CommunityEventsCommunity events play an important role in thesupport available for the brain tumour communityacross Canada. Each year, these events are organizedby individuals and groups whose efforts pay tributeto those affected by a brain tumour and raise fundsfor patient programs and services plus brain tumourresearch.In 2012, 120 community events raised over$368,000. New for the year was the ‘Making Centsof Brain Tumours’ awareness and fundraising campaignthat had 180 displays set up coast-to-coast throughoutOctober, as part of Brain Tumour Awareness Month.“I knew that starting a fundraiser of my ownwould be a huge challenge, especially afterjust being diagnosed with a brain tumour.As a person battling the disease, I wantedto raise as much money as possible forresearch, in hopes that one day a curewill be found. I decided to start theBirdies for Brain Tumours Golf Tournament.Our tournament managed to raise almost$30,000 in its first year. I was overwhelmedwith the success in what not only I hadachieved, but what an entire community offamily and friends can achieve whenpeople come together for a great cause. Weare continuing our efforts in 2013 with the2nd Annual Birdies for Brain TumoursGolf Tournament.My hope is that anyone who has beenaffected by a brain tumour would considercreating a community event, as I believe thatone day a cure will be found if we allcontinue to strive towards it.”Connor Thomson, Winnipeg, MB2012 Winnipeg Spring SprintSpring SprintThe Canada-wide Spring Sprint is the country’s largestfundraiser dedicated to the brain tumour community.With 20 events taking place annually between Apriland June, along with the Virtual Run, Spring Sprintsupporters fund important brain tumour research andthe unique programs that help patients and their lovedones better understand the journey with the disease.In 2012, Spring Sprint raised $1.49 millionthrough individual and team donations and corporatepartners.“When my husband Charlie passed awaybecause of a brain tumour in 2011, our familywas devastated. There were good days andbad days as we learned how to cope withCharlie’s death. Planning our own eventas part of the 2012 Virtual Run wassurprisingly helpful in the healing process,more than I could have ever realized at thetime. Charlie wanted to see more done in ourcommunity for those with brain tumours, andthis way we could do something in his name.”Wendy Dickieson, North Rustico, PEI

For small business owner and pilot Tom, his braintumour journey began with periodic seizures thatcaused blackouts, resulting in a frightening caraccident. Though the experience was terrifying, theaccident led Tom and his loved ones to the answersthey were desperately looking for: Tom was diagnosedwith a non-malignant meningioma. Surgery removedthe kiwi-sized brain tumour and with no lasting effectsfrom the disease, Tom says he is one of the lucky ones.What helped the Hartais stay positive throughout Tom’s diagnosisand surgery were the Brain Tumour Handbooks, there to walk themthrough, step-by-step, what can happen from diagnosis to treatmentand recovery.Today, Tom and his family make it a priority to give back, supportingthe Spring Sprint with their South Huron Heading for Hopeteam. Friends and family rally to take part, and for Tomit’s been surprising to learn just how many people,even those close to him, have been affected by abrain tumour. “To me Spring Sprint is not onlyabout fundraising, which is so important, butit’s also about getting togetherand helping people know they’renot alone.”You give to transform thefuture for brain tumourpatients and survivors.8

9Public AwarenessThe mission to reach every Canadian affected by a braintumour drives our work as a community and publicawareness plays a significant role in accomplishingthis goal.For the first time ever, in early 2012, threeprofessional television commercials wereproduced for Brain Tumour Foundation ofCanada. These public service announcements arehelping the organization reach more individuals coastto-coast.This increased public awareness was the wishof 46-year-old brain tumour activist Rob Blair who losthis 13-year battle with a brain tumour in August 2011.Near the end of his life, he expressed to his brother,filmmaker David Ray, a desire that he carry on hisawareness-raising efforts. Rob’s request was that Daviduses his talent and expertise to create commercials forthe organization that supported Rob while he bravedthis devastating disease.Brain Tumour Foundation of Canada is extremelygrateful for the support of Rob, David and thefilmmaking community that produced theseremarkable pieces.AdvocacyIn 2012, the organization’s advocacyefforts focused on two key issues:Data Collection and Equal Access toTreatments. Volunteer advocates took part indiscussions with government officials and partnersin the cancer community around data collection andthe importance of The Ontario Cancer Registry (OCR)counting every brain tumour, regardless of stageor grade.In addition, Brain Tumour Foundation of Canada isnow registered with the pan-Canadian Oncology DrugReview (pCODR) committee. By registering with pCODR,the organization can act as a patient voice to the reviewgroup when new drugs are put forward for approval.Filmmaker David Ray and his brother, braintumour activist Rob Blair.The production crew on set for the PSA filming

SupportManaging the journey with a brain tumour canbe emotionally challenging.Whether through the cross-Canada adult support groups;BrainWAVE, the pediatric support program; or by phoning thetoll-free information and support line, connecting with otherswho have similar experiences or with a professional who canprovide one-on-one support helps thousands of Canadiansaffected by a brain tumour find comfort each year.“Having been recently diagnosed with a braintumour I was feeling unsure of what to do nextand how to advocate for myself. I called BrainTumour Foundation of Canada and the support Ireceived was really useful and reassuring. I wasalso told about the Ottawa support group andhave now become a regular member and thegroup’s convenor! It’s been extremely helpful toconnect with other patients and families. Learningabout how they navigated the health care systemprepared me for my own journey and has helpedme understand how to better communicate withmy medical team about my needs.”Lianne Brodeur (nee O’Kane), Gatineau, QCIn 2012, hundreds of individuals found comfortthrough Support Services. One-hundred andthree families connected through BrainWAVE –a 72% increase in participation from 2011.BRAINwaveJacqueline Huff and her twins Quinlanand Conner, Chilliwack, BC““Five years ago, Quinlan was still recoveringfrom his initial brain tumour procedures when wegot involved with Brain Tumour Foundation ofCanada to launch the Lower Mainland BCBrainWAVE group. Our family was looking for away to meet and connect with others facing thejourney with a brain tumour.”JacquelineI really wanted the chance to talk to other siblingsof brain tumour patients and survivors, and shareour experiences. We could be with people we’dmet during hospital visits but in a happierenvironment. We could have quality time with ourfriends in places focused on having fun rather thanbeing sick.”Conner, 16“BrainWAVE has given me the chanceto feel like a regular kid, to have funand build friendships that have lastedfor years.”Quinlan, 1612BrainWAVE, summer 2012

13InformationInformation through the Brain Tumour Handbooks,children’s storybook and information kits empowerpatients and their loved ones to learn more aboutthe brain tumour journey and to be the strongestadvocates for their best care.Programming dedicated to health care professionalsprovides learning opportunities and workshopsacross the country. As a result, relationships are builtwith the health care community and specializedinformation increasingly reaches those affected. And,health care teams are better prepared to care forand support those diagnosed with a brain tumour.In 2012, over 500 participants from themedical community joined workshopsand in-service presentations – a 47%increase compared to 2011.“As an oncology nurse and patientnavigator, I have ordered the Adult andPediatric Brain Tumour Handbooks andother resources for my patients. Thematerials have provided me with an easyand concise resource of informationto help support patients and theirfamilies through the brain tumourjourney. I was very pleased to hearabout the medical team and the researchthat guides Brain Tumour Foundation ofCanada’s materials. I can feel confidentthat the information included is currentand best practice.As a health care professional I now feelmore confident in providing guidanceand brain tumour information to patientsand their families. I can also direct thehealth care professionals at our busycancer centre to appropriate informationabout brain tumours.”Debbie McNairnay, Brandon, MBVolunteersMore than 700 volunteers helped run programsand services for the brain tumour communityacross Canada in 2012. Volunteers give of theirtime and expertise through Spring Sprint, as convenors orfacilitators for support groups, as BrainWAVE event organizersand more. For many, it’s a personal connection to the causethat drives their commitment. Without this support, dedicatedbrain tumour services and programs would not be available.“As a recent brain tumour survivor, volunteeringwith Spring Sprint and Brain Tumour Foundation ofCanada has given me a sense of place andcommunity, and allowed me the chance togive back to individuals and families who arefacing tough challenges in their lives. I cannotimagine not being involved in this organization.”“Christina Hagberg, Vancouver, BCTwo years ago my daughter Vicki lost her battlewith a brainstem glioma. As a family, wetreasured the times that we escaped her realityand did something fun together. BrainWAVEis devoted to providing just such times for childrenand their families whose “normal” is facingdifficult challenges every day due to a braintumour. Volunteering with BrainWAVE has givenme the opportunity to help organize andparticipate in these special events. The best part iswe get to watch these kids just be kids, whichis the way life should be.Elizabeth Ozard, London, ON”Volunteers at the 2012 Montreal Spring Sprint

Thank YouBrain Tumour Foundation of Canada extends its deepestgratitude to every donor who makes programs and servicesfor the brain tumour community possible. Each donation,no matter the size, helps change the future of brain tumourresearch and patient care, and brings hope to anyone affectedby this disease. Thank you to the following individuals, familiesand businesses for making a special gift in 2012.Special and Major GiftsWe gratefully acknowledge those donors whomade gifts of $5,000 or more in 2012.AD Ventures Alberta Charitable FoundationCanadian Society for Life Science ResearchMr. and Mrs. O. IacobelliDr. Joseph MegyesiJack Nichol Family Fund, a fund within LondonCommunity FoundationMr. and Mrs. D. ScraggUltragiving FoundationOur sincere thanks to the generous donors whomade a gift through their wills to support braintumour patients and research across Canada.Estate of Andrea Dalton BakerEstate of Mary Katherine BruceEstate of Leslie CarterEstate of John George CoppardEstate of Donald J.T.A. de JongEstate of Lillian Janet HodgertEstate of Ilonka Seder SzabolcsiLegacy FundsThese special Legacy Funds continue to provideendowed funding to chosen services thanks tothe ongoing support of our legacy donors.The David Bloom Legacy FundThe R. Angus King Legacy FundThe Kelly Northey Legacy FundThe Hannah Patterson Legacy FundHeritage ClubHeritage Club members ensuresupport, education and researchfunding for the future by includingBrain Tumour Foundation of Canadain their estate planning.Jane ArnottKen ArnottJoseph BarnesSue BarnesPeter ChislettFarida ChislettLeendert De GoffauMarion De GoffauShelley FitakDouglas FloodRyan FraserCarina JacobsenPeter JacobsenBarbara KennedySusan MarshallDonna McKeeBridget PlumbGrace SchenkMichelle ThibodeauLois TollValerie WicksTed and IreneMegyesi (middleand right), friendsof the late LeslieCarter, accepting arecognition plaquefor Leslie’s generouslegacy gift to braintumour patients14Ryan Fraser and Bridget Plumb,Heritage Club members

15“It is empowering to give back and helpothers who have been diagnosed with abrain tumour. Our family has been a part ofthe Brain Tumour Foundation of Canadafamily for the past 17 years. Our oldestdaughter was 11 when she was diagnosedwith a non-malignant brain tumour requiringtwo surgeries. In spite of having permanentendocrine deficiencies because of thetumour, she thrives in all aspects of herlife. At the time, though, there weremonths of uncertainty and a gap inavailable information that was easilyunderstood. The Brain Tumour Handbookbecame a well-thumbed resource in ourhousehold. With three young children wealso found support through BrainWAVEactivities. The diagnosis of a brain tumourimpacts the entire family in so manydifferent ways and I have watched thevariety of ways the organization works torespond to these needs.Over the years we have continued tosupport the organization in different ways.I was part of the Board of Directors forseveral years and we’ve given financiallyas a family through personal contributions,golf tournaments, dinners and the SpringSprint. When I heard last year that BrainTumour Foundation of Canada wasembarking on three new projects, I wantedto help by getting information out to others.By offering different types of opportunitiesto support families affected by the disease,donors are enabled to choose the onethat best suits them. Our family hosteda dinner bringing together friends thathave supported us and the organizationover the years. It was at the dinner thatwe learned about the special projectscampaign and had the opportunity toask questions. In a small way I hope thatby spreading information about the uniqueways people can personally and financiallysupport the organization, we will helpothers who have had their life impacted bya brain tumour.”Heather Mastromattei, Ilderton, ONKelly SocietyNamed for Kelly Northey, who inspiredthe founding of Brain Tumour Foundationof Canada, these leadership donorsgenerously made a multi-yearcommitment to support braintumour patients.Jane ArnottChantalle ButlerMarjory ButtrumScott Courtice & Megan WinklerRolando & Pam Del MaestroRon & Dawn FulmerTerry KincaidJeane KingPatricia KleinMarianne LeeMaryanne MacDonaldWilliam & Margaret MacDougallAlykhan MamdaniSusan MarshallHeather MastromatteiJoseph MegyesiDwight Moulin

17Corporate DonorsIn addition to corporate sponsorships,special gifts of $1,000 or more werereceived from the followingcorporations and foundations:A.M.A. Plastics LtdATCO Ltd.BHP BillitonCenovus Energy Inc.Deys FabricatingEdmonton Public TeachersEnCana CorporationJDO Holdings Ltd.National Steel Car LimitedNexen Inc.North Waterloo Farmers Mutual Insurance Co.Par Fore MarketingRBC FoundationRMO Holdings Ltd.TAQA North Ltd.Vogel LLPCommunity EventsThank you to everyone who plannedand hosted a Community Event in 2012.Your unwavering support means patientsand survivors across the country can findhope through important research and byconnecting with others on the journeywith a brain tumour. A special thankyou is extended to the organizers andplanning committees of the followingevents that each raised $5,000 or more.27th Sultan Marathon Des SablesA Night to Remember in memory of André MedeirosBanff Jasper RelayBill Manners Memorial Golf TournamentBirdies for Brains Golf TournamentConcert for a CureDan Cote Memorial Golf TournamentDirect Line Golf TournamentJeff Graham Memorial Golf TournamentJourney of Hope Through MusicKathy Turek Memorial Golf TournamentPasta Night, Hamilton Spring SprintPrecision Hair Gallery Cut-A-ThonRacing for Dad (Ironman Triathlon)Ride Strong Poker RallySNC Law Golf TournamentTeam Strong - Bottle DriveEhlana James presents her Team Strong - Bottle Driveproceeds at the 2012 BrainWAVE holiday party

Brain Tumour Foundation ofCanada Board and Staff(as at December 31, 2012)Executive CommitteeChair: Joseph MegyesiVice-Chair: Sean TaggartTreasurer: Sarah KeelsSecretary: Jane ArnottDirectorsMarjory ButtrumJeane KingPatricia KleinMarianne LeeAlykhan MamdaniJeff PattJohn StevensonFred WilderHonorary Members2012 Staff TeamSusan Marshall, Executive DirectorJennifer AllenCarol AnthonyRosemary BosTeresa DanieleJim DuketowDawn FulmerTanya GianneliaJanic GorayebKatrina HassJeff HowardJennifer McIntoshKoye OyerindeEileen QuiggSusan RelecomTeresa WammesSharon WhitesideMegan WinklerPamela Del MaestroRolando Del MaestroPerry FergusonJane HauserDavid LucySteve NortheyPhyllis Retty18

Our MissionOur Mission is to reach every person inCanada affected by a brain tumour throughsupport, education, information andresearch.Our VisionOur Vision is to find the cause of andcure for brain tumours while improvingthe quality of life for those affected.Our ValuesHope: We strive to empower and engage peopleaffected by a brain tumour through optimism, whileinspiring the community to share their time, talent,experience and resources.Caring: We act with empathy, compassion,understanding and a strong desire to empower andemotionally support those we serve.Integrity: We are committed to honesty, respectand transparency in our actions and to always do what wepromise.Accountability: We fulfill our legal, moral andethical standards with rigor and we report back to ourstakeholders in a timely and accurate manner.Collaboration: We work toward achievingour mission through effective partnerships, alliancesand affiliations with volunteers, staff, donors and othermembers of the brain tumour community.620 Colborne St.Suite 301London, ONN6B 3R9T 519.642.77551 [800] 265.5106F 519.642.7192www.braintumour.ca