Spring 2007 B R A I N S C A N 1

NEWS & INFORMATION FOR PAT IENTS AND FAMIL IES L IV ING WITH BRAIN TUMORS

PROVIDING INFORMATION ABOUT OUR PROGRESS AT THE BRAIN TRUST AND ACTIVITIES AT THE GERRY & NANCY

PENCER BRAIN TUMOR CENTRE, BRAINSCAN IS A GREAT RESOURCE FOR BRAIN TUMOR PATIENTS AND THEIR

FAMILIES, DONORS, THE MEDICAL COMMUNITY, LIKE-ORGANIZATIONS, AND VOLUNTEERS ACROSS CANADA

AND THE UNITED STATES

B R A I N S C A N

Holly Pencer Bellman, Executive Director

A MESSAGE FROM THE DIRECTOR

THE THRILL,THE LIGHTS,THE GLITZ,THE GLAMOUR, THE EXCITEMENT!Get in gear for a ‘High StakesHappening’ at ‘Viva Las Vegas’ onThursday, May 31st, 2007 at TheLiberty Grand EntertainmentComplex, Exhibition Place in

Toronto. Feel the energy as you enter our high-roller havenreminiscent of the city that never sleeps…featuring a Vegas-stylelounge with twinkling neon lights where guests can try theirluck at the Black Jack Tables and Wheels of Chance for the

chance to win cash; enjoy a live ‘Cirque‘ inspired floorshow offantasy, feathers and fun; dance to the sounds of The Anita RossiBand featuring ‘The King of Rock n Roll’ and other Vegasperformances; and savor gourmet fare and cool cocktails. Guestswill delight in our better-than-ever silent auction featuring anarray of items including gorgeous diamond jewellery, stylishaccessories, a luxury Fisher Island getaway, a Fallsview CasinoResort package, a Silver SLK Mercedes Pedal Car for your littledriver (plus many other great kid selections), extravagantshopping sprees and and an over-flowing restaurant section toname a few. Guests can also load up on Lucky Keys for the

“Making a Difference in the Quality of Life of People Living with Brain Tumors”

B R A I N S C A N

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viva THURSDAY, MAY 31, 2007 at 7:30 pmThe Liberty Grand Entertainment Complex,Exhibition Place, Artifacts Room25 British Columbia Road, Toronto

EVENING SPONSOR

MAGAZINE & DECORSPONSOR

ENTERTAINMENT SPONSOR

TD Securities

Genuity Capital Markets

VEGAS LOUNGE SPONSOR

David, Stacey, Jesse, Josh & Geri Cynamon

• Vegas Style Lounge • Win Cash at Black Jack Tables & Wheels of Chance• 'Cirque'-Inspired Floorshow • The Anita Rossi Band featuring ‘The King of Rock n Roll’

and other Vegas Performances• Karaoke Cafe• Graceland Wedding Chapel• Gourmet Vegas Fare and Cool Cocktails• Silent and Live Auction• Lucky Keys and Other Surprises

Dress: Get Glam (as always, denim is welcome)

FOR MORE INFORMATION PLEASE CALL 416.923.2999

PROCEEDS WILL SUPPORT RESEARCH AND PATIENT CARE AT

THE PENCER BRAIN TUMOR CENTRE AT PRINCESS MARGARET HOSPITAL

THE GERRY & NANCY PENCER

B R A I N T U M O R C E N T R E

M I S S I O N S T A T E M E N T

PATIENT & FAMILYS E R V I C E S

chance to win a stunning pair of diamond earrings valuing 35 000$ and bid on our Luxury Las Vegas Getaway in our Live Auction…This $12,000 package includes two round tripbusiness class flights, 3 nights of deluxe accomodation at theFour Seasons Hotel Las Vegas, 3 piece Tumi luggage set, limoto/from Toronto airport and $500 in US cash spending money.Get Glam (as always, denim is welcome!) and feel the Vegas heat as over 1,000 patrons come together to party and raisemuch-needed dollars for The Pencer Brain Tumor Centre.

As always, proceeds from ‘Viva Las Vegas’ will go towardtreatment, research and support of brain tumor patients andtheir families at the Gerry & Nancy Pencer Brain Tumor Centre at Princess Margaret Hospital in Toronto. This year the corporate and private sector support for the gala has beennothing short of overwhelming! We are thrilled to once againhave on board Cott Corporation as our Evening Sponsor;TD Securities as our Magazine and Décor Sponsor; David and Stacey Cynamon as our Vegas Lounge Sponsor; ProPrintand Liberty Grand as our Honorary Star Sponsors; HalpernEnterprises as our Wine Sponsor; Sleemans Brewing andMalting Co. Ltd.as our Beer Sponsor and Harvey Kalles RealEstate as our Auction Booklet Sponsor. New this year, we are pleased to welcome Genuity Capital Markets as ourEntertainment Sponsor; Iceberg Vodka as our Vodka Sponsor;Henri and Lily Cynamon as our Tequila Sponsor and Laureland Danny Fleisher and Sheldon and Venus Millar as ourEvening Memento Sponsors. As usual,‘Viva Las Vegas’ is sure to be a sell-out so buy your tickets now at $275 each orbecome one of our distinguished sponsors.

To get on our invitation mailing list, to order your corporatepackage or purchase tickets, call our ‘Viva Las Vegas’ hotline(416) 923-2999 on-line at www.pencerbraintrust.com.

In other exciting news, Princess Margaret HospitalFoundation Board Chair, Neville Kirchmann has donated$1Million to complete the Neurooncology Chair which

will be known as The Kirchmann Family Chair in Neuro-oncology Research at Princess Margaret Hospital.This chair will enable the Pencer Centre to continue with cutting edgeresearch into developing better treatments for brain tumors, andwill most certainly keep the Pencer Centre at the forefront of the international Neurooncololgy Community. It is particularlyfitting that this Chair be named for the Kirchmann family sinceNeville had a personal relationship with Gerry Pencer and was,in fact, CEO of the Foundation when the Pencer Centre wasestablished.A search committee will now begin the process ofselecting the most appropriate person to hold this exciting newposition. We look forward to making that announcement oncea selection has been made.

Enjoy a great day of golf for a great cause! Mark Monday,August 27th, 2007 in your calendar for Cott ‘s 7th AnnualGerry Pencer Golf Tournament. Held at the historicScarboro Golf & Country Club, all proceeds from this great day go to The Gerry & Nancy Pencer Brain Tumor Centre atPrincess Margaret Hospital.This exciting tournament is always a hot ticket so arrange your foursome early. For moreinformation, please call Ines Marra (905) 672-1900 x 19211or email imarra@cott.com.

Finally, in conjunction with the Toronto Marathon, we hopeyou’ll join us for our Annual ‘Head for a Cure’ 5K walk onSunday, October 14th, 2007. Last year, over 150 eagerparticipants raised in excess of $120,000 for The Gerry &Nancy Pencer Brain Tumor Centre! From the bottom of myheart, I say thank you to our Patient and Family AdvisoryCommittee for organizing the day and to all participants forcoming out and ‘Heading for a Cure.’ For more details log ontoThe Pencer Centre website www.uhn.ca/programs/penceror The Brain Trust website www.pencerbraintrust.com orcall Maureen Daniels at (416) 946-2240.

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2 B R A I N S C A N Spring 2007

TTOO BBEE AA ““CCEENNTTRREE OOFF EEXXCCEELLLLEENNCCEE”” WWHHIICCHH PPRROOVVIIDDEESS MMUULLTTIIDDIISSCCIIPPLLIINNAARRYY CCAARREE,, TTRREEAATTMMEENNTT,, AANNDD SSUUPPPPOORRTT FFOORR BBRRAAIINN

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☺ DIRECTORS MESSAGE

Thanks to all our supporters and everyone who contributed to this issue and as always, if you have any ideas or suggestions about the newsletter, or you would like to get on our mailing list, or have a story to share,please feel free to contact me by phone or by e-mail at (416) 923-2999 or hollybellman@aol.com

Spring 2007 B R A I N S C A N 3

PATIENT STORY �

It had all begun several months earlier on a typical, bitinglycold, snowy, overcast day in March. I was working in myoffice where I held a position as a national accountmanager with a notable Blue Chip corporation. I had just received a call from our president inviting me to aLeafs game - 2 platinum tickets that evening. I knew that this invitation was not to be taken lightly. I hadworked intensely on several projects in the past fewmonths and had received much recognition, accoladesand rewards. Yes I was feeling good about what I hadaccomplished. But this came with a price since I wasworking very long hours, no breaks, and no lunches.I was married to a man I dearly loved, and lived in abeautiful two storey Georgian home in a very niceneighbourhood with my adorable pet cockapoo the“Duchess”. Unfortunately due to my hectic schedule I did not have much time to enjoy my home life.

Later that evening after the hockey game I startedexperiencing very strong headaches and nausea at home.The next day, I thought it was just a flu.A few days passedby, but the headaches continued, now accompanied withvisual disturbances. My GP diagnosed it as a migraine. In

the following month I was given several different types ofmigraine medications and none were successful.At thispoint things were worsening and I had to take considerabletime off from work. I began to feel numbness in my feet,legs and arms in addition to a loss of balance. At somepoint in April I pushed myself to attend a family wedding.During the reception I collapsed. My husband quicklyrushed me to Emergency, I went through a battery of testsand I was later referred to an Ophthalmologist and then aNeurologist.

After meeting with the Neurologist, he quickly set meup to have an MRI. Two days later my husband Tim and I were called into his office. It was June 11, 2004. He toldus the MRI revealed foreign “matter” around the brain. Hewas highly concerned and suspicious. Is there a possibilityit was cancer spread from elsewhere? He booked me intothe hospital for more testing.

The lumbar puncture revealed abnormal cells butnothing conclusive. My initial reaction to these findingswas incredulous.This can’t possibly be happening to me,I was confused and numb - I was actually quite angry and upset as well! I’d had enough of these tests.

bbyy MMaarriiee DDaanniieellllee VVeerrrree--LLaassppaa

My Story:The Importance of Optimism

When I was a young girl I never dreamed a day could be so black. But June11, 2004 was my blackest day, when the neurologist described somethingto me that I had never heard of, had no experience with, and could not evenfathom a response. My life from this point on had forever changed.

My Story:The Importanceof Optimism

I missed my family life, my routine and my small cocka-poo’swet nose as she kissed me when I came home from work,her tail wagging like a helicopter about to lift off.

I was also upset about taking so much time away fromwork, but deep down inside I was really frightened. Finally,a spinal MRI revealed more, there was something in myspine as well. A brain biopsy was later performed. It was then confirmed I had cancer - a rare type for adults – called “PNET” – and which is more commonly a children’s tumour.

I’ve had setbacks in my life, and stressful situations, how-ever, nothing could have prepared me for the earth shatteringwords “You have cancer”.

If you have not heard these words, it is quite impossible tocomprehend their effect. You know how it is when you havejust lost your wallet, lost your child in a mall, or imagine a12-wheeler truck is barreling down the road towards you.

I was at a loss for some time. I was brought up to believethat cancer is the worst thing that can happen to you. It wasall a shock, however, I did not pass out, scream, or have ananxiety attack as I thought I would in this type of situation.Instead, later on that day a calmness eventually took over,almost a sense of relief knowing what was troubling mybody, possibly for many years.

Nevertheless, the next couple of days were difficult. Beingan “A” type personality did not help the situation.The fullreality of this news had started to sink in and my husbandand I were both thrown into a psychological and emotionallabyrinth that left us feeling frightened, hopeless and totallyexhausted.We had many questions but few answers. I wasconcerned about pain, life span and the impact this wouldhave on my job. I was feeling guilty as well, as I realized atthis time the disease would not only impact me but myhusband, and my family as well. As upset as my husband was at this time he was constantly there to comfort myanxieties and fears and to commiserate with me.

At this time, we had to make a decision about a cottagewe had booked earlier for our summer holiday.We weren’tsure if we could even focus on a vacation right now. Look-ing back, I am glad we decided to take our “time out.” Thisenabled us to regroup our thoughts on the whole situation.At the cottage, we talked and talked, and reasoned a plan ofaction – we decided we would not let the terror get a holdof us, we knew we had to get control, we were ready to takethis on.We wanted to know the extent of the illness and thebest and quickest way to deal with it.We wanted to armourselves with as much information as possible.We alsodecided to try to live our lives as routinely as possible.This came to be known as the “new normal.” I was not asconcerned about my job now, as a realization started to setin….My number one job would now be to look after myselfand try to heal. I knew I would have a lot of challenges

ahead of me. If I wanted to try for a positive outcome Iknew I would have to make the best of my situation somehow, some way.

As my husband always said “Make lemons into lemonade.”I knew I had to change my negative attitudes to positiveones if I was going to try to overcome the stress of thesituation. I was ready to test my new-found optimism over matter.

In August of that year, I was sent to Princess MargaretHospital to start a course of radiation and chemotherapy.Surgery was not a viable option in my case due to thelocation and make up of the cancer I have. I started a courseof five weeks of radiation with Dr. Dawson to treat my spineand head. Dr. Dawson explained the side effects, as thisradiation was very powerful. She also put me on Dexametha-con to reduce swelling. I did encounter side effects from theradiation - back pain, headaches, sore throat, overall weaknessand weight gain but Dr. Dawson monitored me well, and wasable to help me out with any issues I was having at the time.

One of my own personal sorrows was that I was too weakto pick up my little dog at the time and play with her, and gofor long walks.The simplest things, but I really missed them.I knew I had to keep marching on with the treatments nomatter what. Not just for myself but my husband and myfamily. My parents and friends and Tim were very supportiveduring this difficult time - phone calls, flowers, drives toappointments. Their devotion and prayers helped me through a very difficult time.

One day at the hospital during one of my radiationsessions,Tim saw a notice on the bulletin board for a work-shop for cancer patients called “The Healing Journey.” It was for both patients and caregivers.We both took theworkshop.The course was a great source of optimism, hope,knowledge and inspiration. It helped us to understand myillness and deal with the diagnosis in a meaningful way byusing self-reflection, examining our behaviors and incorpo-rating meditation to help us heal. It taught us to apply an“integrated” approach to being healthy, to nourish the mind,body and spirit collectively.

In January 2005, I met with Dr. Mason to go over thechemo program I would now be on. I found him to be very knowledgeable and reassuring. At this time I also met Maureen, Dr. Mason’s coordinator. If anyone has anyanxieties about chemo, Maureen has a special gift of puttingyou at ease as well as being tremendously helpful andsupportive. As a result of my weakened state, Dr. Masondecided to put me on Temazolomide, a newer chemo with fewer side effects.

I remained on Temazolimide for the next 18 months withvery minimal side effects. I had excellent care during thattime. I was well monitored by Dr. Mason with monthlyfollow-ups and regular MRIs.

4 B R A I N S C A N Spring 2007

PATIENT STORY

The Importance of Optimism continued from page 3

The Importance of Optimism continued on page 9

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Spring 2007 B R A I N S C A N 5

Dr. Normand Laperriere,Associate Medical Director, The Gerry & Nancy Pencer Brain Tumor Centre

Dr. Mason will have previouslydescribed to you the break-throughtrial first reported in 2004 of thebenefit of the addition to Temozolo-mide to standard radiotherapy forthe management of patients withGlioblastoma Multiforme, such thatthis now represents the standard of

care in newly diagnosed patients. However, the upper age ofpatients on that study was 70 years, and we just don't knowwhether adding Temozolomide to radiation therapy in patientsthat are older than 70 will improve results. In addition, olderpatients do not tolerate the full 6 weeks of radiotherapy as well as younger patients.A recently published Canadian studydemonstrated the equivalence of a 3-week course of radio-therapy to the full 6-week course of treatment in older patients,and that this shorter 3-week course of radio-therapy was bettertolerated. For that reason we will soon be embarking on a studyof the 3-week course of radiation therapy versus the 3-week

course of radiotherapy plus the addition of concurrentTemozolomide during radiation followed by monthly cycles of Temozolomide until there is evidence of tumor progressionin patients age 65 or older.We anticipate that this trial will open this summer at Princess Margaret Hospital and is beingorganized under the auspices of the National Cancer Instituteof Canada Clinical Trials Group (NCIC CTG) in co-operationwith the Brain Committee of the European Organisation forResearch and Treatment of Cancer (EORTC). It is expected to enroll 556 patients over the next 5 years.

Spring is just around the corner, and so is our annual PencerGala on Thursday, May 31 at the Liberty Grand.This year'stheme is "Viva Las Vegas" and looks to be an exciting eveningof fun and entertainment.As always I am very much lookingforward to this event, and am appreciative of the funds that areraised at this event to support our ongoing efforts in patientcare, support and research at the Pencer Centre. I hope to seeyou there.

�

Sunday, October 14, 2007 at 8:30 a.m.The 5K Run/Walk will begin at Queen’s Park opposite Hart House and run south on University Avenue to Front Street, turning north up University Avenue and finishing at Queen’s Park

Fees: by June 20th- $25, by September 10th- $30, after September 10th- $35

Register: by October 1, 2007 to ensure you receive your Head for a Cure t-shirt and race kit.Pledge sheets available at the Pencer Centre, by contacting

Maureen Daniels at 416-946-2240 or online at www.5kwalkrunforcancer.ca

Head for a CureHead for a Cure

A 5K Run in Support of The Gerry & Nancy Pencer Brain Tumor Centre

�MEDICAL NEWS

6 B R A I N S C A N Spring 2007

Christine Pond, Psychology Assistant

For many patients, once theirradiation and or chemotherapytreatment is completed, and theybegin to rejuvenate, they may alsobegin to contemplate returning to work or school. In other cases,family members may wonderabout how much independence apatient can safely manage. Over

the past several years, the Neuropsychology department atThe Pencer Centre, led by Dr. Kim Edelstein, has workedhard to develop a program that can provide timely andaccurate assess-ments for patients who may be wonderinghow or if their cognitive abilities have been affected bytheir diagnosis or the treatment they have received.Anassessment of an individual’s neurocognitive status can help to identify areas of weaknesses and develop strategiesfor coping with these issues in the context of day-to-dayliving or returning to work or school.

In December 2006, Christine Pond joined the PencerCentre in the role of Psychology Assistant. Christineworks with Dr. Edelstein and administers standardizedcognitive tests required to provide a thorough assessmentfor each individual patient.

Christine earned her Honours Bachelor of Arts degreein Psychology from the University of Waterloo. She thencompleted her Masters of Education in DevelopmentalPsychology at the Ontario Institute for Studies inEducation (OISE) at the University of Toronto.

Prior to joining The Pencer Centre, Christine workedwith several clinical psychologists, and at the Hospital for Sick Children, as a psychology assistant, where herrole included administering psychological and neuro-psychological tests to children.

Christine explains that one of the most appealingaspects of her role is that it combines both clinicalassessment of patients as well as the opportunity tocollaborate with Dr. Edelstein on research projects.In the clinical piece of her position, Christine is res-ponsible for administering and scoring a number ofdifferent neuropsychological tests for patients.These tests measure learning and memory, attention andconcentration, visual spatial abilities and executivefunctioning in addition to other cognitive abilities.The research activities of the Neuropsychologydepartment are exploring a number of questions,including examining the long term Neurocognitive effects of treatment on adult survivors of pediatric cancers.

In her previous positions, Christine worked exten-sively with children.“Working with adults is different,”she says.“Children often require more motivation to get them engaged in the Neurocognitive testingprocess. Because adults have a fuller understanding of the reason for and benefits of the assessments,they are engaged in the process from the beginning.”

Christine says she is enjoying her work at The PencerCentre on many levels.“It is a pleasure to work with ourpatients as they have amazing strength and resilience. I am also finding the environment at The Pencer Centrevery stimulating.”

Christine’s quiet professionalism quickly put herpatients at ease during the testing process. The PencerCentre is fortunate to have someone with Christine’scredentials and expertise, and we are pleased to welcomeher to the team.

If you are wondering if a neuropsychological assessmentmight be of benefit to you, or a loved one, make a point tospeak to your oncologist about it.

STAFF PROFILE�

The Pencer Centre has a toll-free number!

1-877-282-HOPE4673

DID YOU KNOW?

Spring is here and the Clinical Trials department at ThePencer Centre has never been busier! Once again we are pleased to report on a trial that is currently enrollingpatients at The Pencer Centre.

At this time, the Research Ethics Board has approvedanother clinical trial, sponsored by the Radiation TherapyOncology Group (RTOG), for patients who are newlydiagnosed with Glioblastoma.This study is a phase IIItrial comparing conventional adjuvant Temozolomide(5/28 day) with dose-intensive Temozolomide (21/28day).

A study performed by the European Organization for Research and Treatment of Cancer (EORTC)and the National Cancer Institute of Canada (NCIC)showed that patients who were newly diagnosed with a malignant brain tumor called Glioblastoma, andreceived a drug called Temozolomide in combinationwith radiation treatment, and followed this treatmentwith Temozolomide for 6-months without radiation,had improved tumor control compared to those patients who only received radiation treatment.

Other studies have shown a relationship betweentumor cells that contain a particular enzyme called O6-methylguanine-DNA-methyltransferase (MGMT)and treatment response and outcome in patients withGlioblastoma, who were treated with certain types ofchemotherapy drugs.These studies showed that if theMGMT underwent a biochemical reaction called

methylation, this enzyme becomes inactive and causes the tumor tissue to be more responsive to chemotherapytreatment.Therefore, these studies showed that patientswith tumor tissues containing methylation of MGMThad significant improvement in average survival whenthey were treated with chemotherapeutic drugs, suchas Temozolomide.

A few small studies have shown that increasing thelength of Temozolomide treatment can lead to continuedinactivation of MGMT activity, which may lead toimproved chances of survival.The phase III trialcomparing conventional adjuvant Temozolomide (5/28day) with dose-intensive Temozolomide (21/28 day),sponsored by RTOG, is being conducted to determinewhether increasing the length of the Temozolomidetreatment after radiation from 5 days out of 28 days(standard-dose schedule) to 21 days out of 28 days (dose-intensive schedule) will further improve survival.Another purpose of this study is to determine whetherthe response to Temozolomide and overall patientoutcome depends on whether or not the tumor cellscontain the MGMT enzyme.

Clinical Trials in the Pencer CentreBy: Leslie Williams, BSc, BScN, RN

CLINICAL TRIALS �

“When things go wrong, don’t go with them”

Elvis Presley

This clinical research study is now enrollingeligible patients at The Pencer Centre. Forfurther information please contact MariyaBakalets at 416-946-4603 or myself, LeslieWilliams, at 416-946-4624.

Spring 2007 B R A I N S C A N 7

8 B R A I N S C A N Spring 2007

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C A R E G I V E R W O R K S H O P

Saturday, May 26th, 20078:00 a.m.– 4:30 p.m.

The Gerry & Nancy Pencer Brain Tumor Centre,18th Floor, Princess Margaret Hospital

The Gerry & Nancy Pencer Brain Tumor Centre invites caregivers of patients living with a brain tumor to join us for a one-day workshop devoted to information,education and sharing. Topics to be covered include:

• practical tips for coping with a new diagnosis and tips on caring for yourself

• parenting during a serious illness

• advice about financial and legal issues

• palliative care

• participants will also have an opportunity to try

a selection of complementary therapy modalities

such as art therapy, journaling and Tai Chi

Don’t miss this opportunity to nurture your body, mind and spirit….

Breakfast, Lunch and coffee breaks will be provided. This program is made possible through a generous donation from the J. David & Jan Crichton Fund

Admission is Free, but space is limited To register, call Sandy Ayers at 416-946-2277Registration Deadline: May 26, 2007

Saturday, May 26th, 2007

Spring 2007 B R A I N S C A N 9

�PATIENT STORY

My MRIs were all stable during this time. I am now offthe chemo and things are still stable and I will continuemy follow-ups with Dr. Mason.

Two and a half years have passed since my diagnosis and it has been a long journey. I am very pleased to saymy cancer has been managed successfully to this point,but not cured. However, looking back I am no longer the same person I used to be.

I have had to reevaluate myself and reinvent myself to deal with these new life experiences. I needed tochange my daily attitude to be more positive, to live with this and live through it. I have been lucky enoughthat I can look back at the positive aspects of myexperience. My life is much more meaningful now than it ever was. I have met many wonderful people and made many new friends. I have learned to lessencomplexity and negativity, and lead a simpler and stressfree life. Meditation has helped, as have inspirationalwritings from “The Healing Journey” and other greatworks from Norman Cousins and Bernie Siegel. I spendmore time now with my family, husband and friends.

They have devoted so much of their time and supportedme every step of the way.Their encouragement hashelped me to live through this experience. I am verythankful to them. I have revived my original careerchoice to be an artist. Oh yes, and most importantly,since the side effects from radiation have improved I am now able to pick up the “Duchess” and take her for walks in the park! A simple thing that means theworld to me.

So that’s my story to date – it’s been a lesson inunderstanding one’s self and how body, mind and spirit affect our health and well-being. I hope myexperience gives inspiration and encouragement toothers on this same journey.

In closing, I would like to mention that the excellentcare and dedication I have received from the medicalprofession, and in particular at The Pencer Brain TumorCentre, from the doctors, nurses, and support staff is anintegral part of my healing and is always recalled withgratitude.

The Importance of Optimism continued from page 4

The Pencer Centre has a toll-free number!

1-877-282-HOPE4673

DID YOU KNOW?

“Courage is not the lack of fear. It is acting in spite of it.”

Marc Twain

10 B R A I N S C A N Spring 2007

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Private Members Motion M-235 Passed in the House of Commons

Readers of the Winter 2007 issue of BrainScan will recall thearticle that discussed the exciting developments surroundingthe first hour of debate in the House of Commons onDecember 12, 2006, of Private Members Motion M-235.This important Motion was introduced to the House by

the Honourable Bill Casey, member for Cumberland,Colchester, Musquodoboit Valley.

The text of the Motion reads as follows: “That in the opinion of the House, the Minister of Health shouldcontinue to work collaboratively with Statistics Canada,the provincial and territorial cancer registries, and keystakeholders towards the ultimate goal of creating uniformnational standards and guide-lines for the surveillance of all malignant and benign brain tumours, including datacollection, analysis and reporting.”

On February 12, 2007, Motion M-235 was debated for a second hour in the House. Much like the initial debate,

M.P.’s from across the country, including Lui Temelkovski(Oakridges – Markham), Gord Brown (Leeds-Grenville),Rick Dykstra (St. Catherines), Ed Fast (Abbotsford), RickNorlock (Northumberland-Quinte West) and Bill Casey(Cumberland, Colchester, Musquodoboit Valley) rose in

the House to speak in support of this Motion. It was asincere acknowledgement that this is an issue of importanceto all Canadians, and that those individuals who are livingwith a brain tumor should take comfort in knowing thatthey are not alone in this fight. During the debate, PauleBrunelle (Trois-Rivieres) offered the only voice of dissentfor the Motion.

On February 14, 2007, Motion M-235 was put to a votein the House. It was thrilling to hear the Speaker of theHouse state: “I declare the motion carried.” We are pleasedto report that M-235 was overwhelmingly passed by a voteof 225 to 49!

“THAT IN THE OPINION OF THE HOUSE,THE MINISTER OF HEALTH SHOULD CONTINUE

TO WORK COLLABORATIVELY WITH STATISTICS CANADA, THE PROVINCIAL AND

TERRITORIAL CANCER REGISTRIES, AND KEY STAKEHOLDERS TOWARDS THE ULTIMATE

GOAL OF CREATING UNIFORM NATIONAL STANDARDS AND GUIDELINES FOR THE

SURVEILLANCE OF ALL MALIGNANT AND BENIGN BRAIN TUMOURS, INCLUDING DATA

COLLECTION, ANALYSIS AND REPORTING.”

NEWS

Spring 2007 B R A I N S C A N 11

�NEWS

For patients and families who are living with a braintumor, as well as for the healthcare professionals who care for these individuals , this Motion represents notonly an acknowledgment that these issues are importantto all Canadians, but also provides concrete direction to begin the process of developing uniform nationalstandards and guidelines. There are not adequate wordsto thank Mr. Casey and his tenacious research assistantLorne Berndt for all the hard work they did, working in conjunction with the Canadian Alliance of BrainTumour Organizations (CABTO) to move this Motionforward. It has been nothing short of astonishing! But,the work is far from complete. As Mr. Casey said,“wehave been handed the keys to the car, now we have todrive it.” We look forward to keeping you abreast ofprogress on developments in the creation of uniform

national standards and guidelines for the surveillance of all brain tumors, both malignant and benign.

In the meantime, forwarding letters of thanks to theMinister of Health, Tony Clement, on the passing of M-235 and encouraging swift action to begin to establishnational standards and guidelines would be very helpful.Letters can be directed to the Minister of Health viaemail at: ClementT@parl.gc.ca, via fax at 613-992-5092,or by mail at:The Honourable Tony Clement, House ofCommons, Ottawa, Ontario, K1A 0A6. No postage isrequired to send a letter to Mr. Clement, via the House of Commons.

For complete transcripts of the debates or if you wish to see how your own M.P. voted (or didn’tvote) on this Motion, you can visit Bill Casey’swebsite at www.billcasey.ca.

12

Editors: Holly Pencer Bellman, Maureen DanielsRevenue Canada Charitable Business Number: 88177 7569 RR0001 Design: S.A. Communications

•• CCaarreeggiivveerr WWoorrkksshhoopp 22000077

Our annual “Care for the Caregiver” workshop is planned for May

26, 2007. This full day workshop focuses on providing education,

support and rejuvenation to those individuals who are caregivers

to a loved one who is living with a brain tumor. If you would like

information or wish to register for this program, please contact

Maureen Daniels 416-946-2240

or email Maureen.Daniels@uhn.on.ca.

•• ““TTaakkee MMee OOuutt ttoo tthhee BBaallll GGaammee!!””

The Canadian Alliance of Brain Tumor Organizations (CABTO) in

conjunction with the Toronto Blue Jays, is planning another Brain

Tumor Awareness Day at the Blue Jays game on Saturday,

September 29, 2007. For information, to purchase tickets or to

help sell tickets, please contact Femma Norton at

femma@sympatico.ca

•• SSuuppppoorrtt GGrroouuppss ffoorr BBrraaiinn TTuummoorr PPaattiieennttss aanndd FFaammiilliieess

Our support groups run the second Tuesday of each month from

7:00 – 8:30 pm. These groups are facilitated by several Pencer

Centre staff members. Patients meet as one group while

caregivers meet separately in another room. This is a drop-in

program and no prior registration is required. Simply come to the

Centre on the evening the group meets.

•• RReellaaxxaattiioonn TThheerraappyy

The diagnosis of a brain tumor combined with the stresses

associated with treatment can often lead to feelings of anxiety.

Learn how to “actively” relax by attending one of our drop-in

relaxation therapy sessions. This program takes place each

Wednesday afternoon from 1:00 pm–1:45 pm. Led by our

occupational therapist Stephanie Phan, it offers patients and

family members an opportunity to learn a number of useful

techniques for relaxation. This is a drop-in program and no prior

registration is required, simply come to the Centre at the above

noted time.

•• AArrtt TThheerraappyy

Lead by well-known art therapist Gilda Grossman, this program

uses art as a means to explore and share feelings. No prior art

experience is necessary. This program is free but space is

limited. To inquire about program dates or to register, please call

Maureen at 416-946-2240.

•• PPaattiieenntt IInnffoorrmmaattiioonn BBiinnddeerr

Our Patient Information Binder is as popular as ever. Included in

each binder is a copy of “Brainspirations,” a treasury of inspiring

stories, poems, and recipes published by our own Patient &

Family Advisory Committee (PFAC). If you are a patient of The

Pencer Centre and have not received a copy of our Patient

Information Binder, or require additional sheets for your existing

copy, please contact Maureen Daniels at 416- 946-2240. This

binder is an excellent organizational tool for keeping track of

appointments and all the other information you need during your

ongoing treatment. With thanks to Schering Canada, we are

now able to provide a DVD copy of our educational video

“Radiation Therapy and You” in each binder.

•• RRaaddiiaattiioonn TThheerraappyy aanndd YYoouurr DDVVDD

If you are about to undergo radiation therapy, or have already

done so and would like additional information about the

treatment, our educational DVD “Radiation Therapy and You” is

a must see. This 20 minute DVD contains information about how

the treatment is planned, what types of side-effects are typical

and who to contact should you have questions or concerns.

Thanks to Schering Canada, copies of this DVD are now included

in each New Patient Information Binder. If you have not received

a copy and would like one, please contact Maureen at

416-946-2240.

•• CCDD RRoomm

Our highly acclaimed CD-rom, titled “Understanding Brain

Tumors” contains over 20 hours of information on brain tumors,

available treatments, supportive care services and even real life

patient experiences, has been updated to reflect substantial

changes in standard treatments. This CD is accessible via the

computer in the Resource Library of the Pencer Centre. In

addition, copies are also available to borrow through the main

Patient & Family Library at Princess Margaret Hospital. The staff

at The Centre or one of our resource volunteers would be happy

to help you learn how to use this wonderful tool. For more

information call Maureen, at 416-946-2240 or drop by the

Resource Centre.

•• PPeenncceerr CCeennttrree WWeebbssiittee

Be sure to check out our website for updated information about

programs at The Pencer Centre, upcoming events and projects,

biographies of staff and current or back issues of BrainScan and

much more. To go directly to the site simply visit

www.uhn.on.ca/programs/pencer

•• OOppeenn HHoouussee 22000077 Be sure and mark Friday, October 26, 2007 on your calendars,

and join us for our Annual Open House event. This is a great

opportunity to learn more about the treatments available for

brain tumors and the wide variety of supportive care services

available to both patients and families. Stay tuned for upcoming

issues of BrainScan for further details as they become finalized.

Please note that many of the programs offered at the Pencer Centre are on a drop-in basis, allowing peoplethe flexibility to attend when they are able to. On rare occasions, programs may be cancelled on shortnotice.Therefore, it is always wise to call ahead, to confirm that the program is running on the day you areplanning to attend. Please feel free to call Maureen Daniels at 416-946-2240.

The Gerry & Nancy PencerBrain Trust is a not-for-profitorganization that was developedby the late Gerry Pencer to makea difference in the quality of lifeof people who live with braintumors. This private family foun-dation is the catalyst in the estab-lishment of The Gerry & NancyPencer Brain Tumor Centre atPrincess Margaret Hospital,Toronto. The Centre is dedicatedto providing multidisciplinarycare, treatment, and support forbrain tumor patients and theirfamilies. Additionally, the BrainTrust, in collaboration with TheBrain Tumor Centre will seek tofacilitate and fund the best local,national, and international braintumor research in the hopes offinding a cure for brain cancer.

The Board of Advisors ofThe Gerry & Nancy PencerBrain Trust include:

• Lawrence S. Bloomberg,Director & Advisor,National Bank of Canada

• Richard Cole, President,R.J. Cole FinancialConsulting Limited

• David Cynamon,

CEO, KCP Corporation

• Dianne Lister, LL.B., CFRE,VP, External Relations &Advancement, TrentUniversity

• Dr. Christopher Paige,PH.D., Vice PresidentResearch, The UniversityHealth Network

• Holly Pencer Bellman, Executive Director, The Gerry & Nancy PencerBrain Trust

• Nancy Pencer, President,The Gerry & Nancy PencerBrain Trust

• Dr. Daniel Silver, M.D., FRCP (C)Consultant to the Department of Psychiatry, Mount Sinai Hospital

• Larry Tanenbaum,Chairman & CEO, Kilmer Van Nostrand Co.Limited

For more informationabout The Brain Trust contact Linda McKie at416-923-2999.

BrainScan is published by TheGerry & Nancy Pencer BrainTrust. Inquiries or requests to reprint any of the articles should be directed to MaureenDaniels, Coordinator,The Gerry & Nancy Pencer

Brain Tumor Centre, PrincessMargaret Hospital,

610 University Avenue, 18th Floor,Toronto, OntarioM5G 2M9 Tel: 416-946-2240 or email: maureen.daniels@uhn.on.ca

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