Canadian Hemophilia Society - Quebec Chapter Newsletter The 2004 edition of the CHSQ Christmas colouring book is called: Brindlehorn’s Surprise. Written by Christiane Duchesne and illustrated by Janice Nadeau, everyone's bound to enjoy it! There are only a few copies left of last year’s colouring book: Brindlehorn’s Christmas. Your customers can have a choice. And, who knows, maybe they’ll want both! ollowing Brindlehorn’s Christmas, this year we’ll see Brindlehorn’s Surprise, once again the creation of Christiane Duchesne, recipient of the Governor General of Canada’s Award for children’s literature and illustrated by Janice Nadeau, a rising young illustrator and designer of the 2004 Montreal Salon du Livre poster, it will arrive at our offices in mid-October. We heartily encourage you to send in your orders using the form you'll find in this mailing. Our book still sells for only $5 each and makes a great gift to offer your children and those around you. Every book sold helps the CHSQ carry out its mandate to help improve living conditions for people living with hemophilia or any bleeding disorder and their families, as well as those living with the consequences of a blood transfusion. You can also offer these books where you work: the book is an ideal gift to put under the company Christmas tree. What’s more, HIV COMPENSATION TASK FORCE The CHSQ has reinstated the HIV Compensation Task Force whose mandate is to work for cost-of- living indexation for the Multi Provincial -Territorial Assistance Plan (MPTAP). If you want to be part of this group or if you have any suggestions, communicate by e-mail with Eric L’Hérault, Chair of the Task Force, by e-mail at: [email protected]or with Aline Ostrowski, at the CHSQ office (see coordinates on page 2). ∆ we’re returning to the Montreal Salon du Livre from November 18 to 22 and we’ll have a number of one-day sales locations over the next few months. If you have a few hours to give to this project, or if you want to organize a sale near you and need some help getting it together, or if you have contacts that can help us increase our profits, don’t hesitate to call us. We’d be delighted to work with you to reach our objectives. Please note that books from last year are still available and people who haven’t yet bought one may be happy to have both editions of this creative book. ∆
Transcript
Canadian Hemophilia Society - Quebec Chapter Newsletter
The 2004 edition of the CHSQ Christmascolouring book is called: Brindlehorn’sSurprise. Written by Christiane Duchesneand illustrated by Janice Nadeau,everyone's bound to enjoy it!
There are only a few copies left of last year’scolouring book: Brindlehorn’s Christmas.Your customers can have a choice. And,who knows, maybe they’ll want both!
ollowing Brindlehorn’sChristmas, this year we’ll seeBrindlehorn’s Surprise, once againthe creation of ChristianeDuchesne, recipient of theGovernor General of Canada’sAward for children’s literature andillustrated by Janice Nadeau, arising young illustrator anddesigner of the 2004 MontrealSalon du Livre poster, it will arriveat our offices in mid-October. Weheartily encourage you to send inyour orders using the form you'llfind in this mailing.Our book still sells for only $5each and makes a great gift tooffer your children and thosearound you. Every book sold helpsthe CHSQ carry out its mandateto help improve living conditionsfor people living with hemophiliaor any bleeding disorder and theirfamilies, as well as those livingwith the consequences of a bloodtransfusion.You can also offer these bookswhere you work: the book is anideal gift to put under the companyChristmas tree. What’s more,
HIV COMPENSATIONTASK FORCE
The CHSQ has reinstated the HIVCompensation Task Force whosemandate is to work for cost-of-living indexation for the MultiProvincial -Territorial AssistancePlan (MPTAP).
If you want to be part of this groupor if you have any suggestions,communicate by e-mail with EricL’Hérault, Chair of the Task Force,by e-mail at: [email protected] with Aline Ostrowski, at theCHSQ office (see coordinates onpage 2). ∆
we’re returning to the MontrealSalon du Livre from November 18to 22 and we’ll have a number ofone-day sales locations over thenext few months. If you have afew hours to give to this project,or if you want to organize a salenear you and need some helpgetting it together, or if you havecontacts that can help us increaseour profits, don’t hesitate to callus. We’d be delighted to work withyou to reach our objectives.Please note that books from lastyear are still available and peoplewho haven’t yet bought one maybe happy to have both editions ofthis creative book. ∆
he CHSQ has beenreorganizing during the past fewmonths. The structure andworkings of committees have beenadopted so that they respect thepriorities identified during ourNovember 2003 strategic planning.
From now on, there will be fourprincipal committees:Representation/Advocacy,Programs, Fundraising andGovernance each including anumber of working groups whosemandate and makeup will be lessdemanding, and the results moretangible. If you’d like to know moreabout the complete structure ofthese committees, you can contactthe office (see our coordinates atthe bottom of this page). A numberof the organization’s documentsand policies have also beenupdated or are in the process ofbeing revised.
The present employees are capableand can count on a strongvolunteer base to support them intheir work. So much so that the
CHSQ is now ready to return to itsformer autonomy. The servicecontract with the National (CHS),which ends in early October, willnot be renewed. Patricia Stewart’seditorial on page 3 covers theessential elements on this subjectand gives the ins and outs as wellas the outcomes of this decision.
A huge word of thanks goes to theBoard of Directors and theemployees at the National level.They supported us and helped usget through a difficult time, and weare very grateful to them. From nowon, L'Écho du facteur will carry acolumn entitled ‘News fromNational’, which will deal withactivities and accomplishments atthe CHS, as well as its role inrelation to provincial chapters.
On a whole other topic, I invite youto carefully read the text by SylvieLacroix on page 8 dealing with backto school. There are a number ofinteresting pieces of advice anduseful references for this time ofyear when parents of children witha bleeding disorder often have toeducate teachers about their child’sreality. ∆
Editor:François LarocheContributors:Keith HunterSylvie LacroixLouis-Charles MartinAline OstrowskiAntoine, Audrey Ann etJustine Page-LacasseChantal RoyPatricia StewartJulien VeilletteProofreaders:Geneviève BeauregardAline OstrowskiPatricia StewartPage layout:François LarocheYves BolducTranslation:Patricia Stewart
The opinions expressed in the various columns are those of the authors and do notnecessarily represent the viewpoint of the CHSQ.To let us know your comments or to give your opinion on any related topics,send your text to the following address:L'Écho du facteur, CHSQ, 625, President-Kennedy Avenue,Suite 505, Montreal (Quebec) H3A 1K2Telephone: (514) 848-0666 or 1-877-870-0666Fax: (514) 848-9661or by e-mail to the following address: [email protected] Site: www.hemophilia.ca• L'Écho du facteur is a quarterly newsletter
produced by the Quebec Chapter of theCanadian Hemophilia Society and isdistributed to its members.
Circulation : 250 in French, 100 in English
Legal deposit : Bibliothèque nationale duQuébec, 2004.
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2004 Christmas ColouringBook Campaign 1HIV CompensationTask Force 1
A Word from the Editor 2
Editorial 3A Word from theCoordinator 4 & 5Focus on Hepatitis CDealing with Discomfort -Nutrition Tips for Peoplewith Hepatits C 6 & 7
Nurses' CornerSeptember: Synonym forback to school? 8 & 92004 Summer CampTestimonials from youngsterswho attended camp 9News from NationalCHS - CHSQ: What's thedifference? 102004 SummerCamp in Pictures 11
In Brief... 12
that are needed to make therunning of this organization asuccess, we are ready to returnto our previous working model.
OnSeptember 2,2004, theCHSQ Boardof Directorsunanimouslyapproved theExecutiveCommitteedecision toterminateour contractwith the CHSas of October1, 2004.
We havebeen trying,withoutsuccess, tohiresomeone tohandlefundraising. We’ll continue thissearch. In the meantime, ourpresent staff will handle thecolouring book campaign, ourmajor fundraising effort, andsome program activities will haveto be put on hold.
Unfortunately, due to a lack ofspace at our present location andwith no room for expansionavailable for a new staff person,the CHSQ offices will be movingin early 2005. For the time being,we’ll remain in the offices onPresident Kennedy.
We wish to express ourappreciation to the CHS – Board
s summer gives way tofall, a spirit of new beginningsis in the air. New plans, newactivities, a time of change.
The CHSQ is also in the processof change. In 2001, though ourfinancial situation was stable,we were experiencingadministrative difficulties dueto a high staff turnover duringthe previous two years.Volunteers and staff alike wereoverworked and barelymanaged to keep services toour members going. Weapproached the NationalExecutive Director at that time,Daniel Lapointe, to see if theCHS would be able to help usout until we reorganized.
At our Annual General Meetingin April 2002 held in Matawinie,CHSQ members agreed toaccept the creation of a servicecontract with the CHS wherebywe would pay for the Nationalto handle administrative details,including staff supervision,accounting, office resources andstaff support, in exchange forfinancial compensation. Wepreserved our independentfinancial status and our powerof decision on internal policies.
We have now regrouped andrestructured. Under thededicated leadership of staff, inthe guise of Aline Ostrowski andGeneviève Beauregard, whohave quickly mastered themultiple and complex dossiers
of Directors for theircooperation, and to the stafffor their support. A spirit ofcooperation has grownbetween the two sections thathas improved services to ourmembers and strengthened ourties with the National level. Weintend to continue in thiscooperative spirit that has builtup over these past two years.
We all have the same goal inmind – to give the best servicesand support possible to ourmembers and to all peopleliving with bleeding disorders.
We’ve also been hard at workupdating official policies anddocuments as well as settingout procedures for the smoothrunning of the organization infuture.
We’re very encouraged by anincreasing number of memberswho have decided to getinvolved by sitting on variouscommittees. This was one ofthe main goals we set forourselves in our November2003 long-term planningexercise. Our next challenge isto increase fundraisingopportunities and widen thescope of our services.
While there are still a fewglitches to be worked out, thefuture for the CHSQ looksbright, thanks to lots of hardwork on the part of our staffand our volunteers. ∆
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A typical sceneat summercamp: a nursesupervising ayounghemophiliacgiving himselfan infusion.We see LouisetteBaillargeon,nursecoordinatorfrom theSherbrooketreatment centreand AntoinePage-Lacasse.
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PROGRAMS
Summer CampOur summer camp, which tookplace from July 18 to 23 in Saint-Raymond-de-Porneuf, intended forkids with a bleeding disorder andtheir siblings, was a great success.
Our 19 participants, among whom7 have hemophilia, were able totake part in great outdoor activitiesas well as other organized activitiesin a beautiful setting with directaccess to a lake.
Louisette Baillargeon and GinetteLupien, hemophilia clinic nurses,loved their experience. We want tothank them for having agreed towork at camp this summer camp.A number of kids learned to selfinfuse their factor concentrates andthis reminds us how important thisactivity is for our young members.
As for our youngster who went toCamp Wanakita in Ontario as partof an exchange program with theOntario Chapter of the CanadianHemophilia Society, he wasabsolutely thrilled.
You can read all about our youngmembers’ experiences in this issue.See you again next year!
Family Weekend for Familieswith InhibitorsThirteen families living withinhibitors will gather at the Hoteldu Manoir des Sables in Orford theweekend of October 1,2 and 3, totake part in a weekend that willoffer them information and toolsto better cope with their child’sinhibitors through workshops andvarious activities.
Thanks to the support of a numberof volunteers and the participationof three treatment centre nursecoordinators, we’ll be able to offerthe children interesting andenjoyable activities in a safe setting.The little ones will be taken careof in the day care centre whileparents attend workshops, and theolder ones will go apple picking,visit an apiary and spend time inthe pool as well as enjoy otheractivities on the lake.
A number of health professionalswill lead workshops on themeschosen in keeping with the needsthat families have expressed. Wewould like to thank them for theiravailability because their presencewill greatly contribute to makingthis weekend a high quality activitythat will benefit all families.
We also want to thank thepharmaceutical companies, NovoNordisk, Bayer and Baxter, for their
financial contribution to thisproject.
Members Address Book:Last CallWe haven’t received a greatnumber of replies from membersto be included in this book. If youwant your coordinates to beincluded, we invite you tocommunicate with us quickly. Thepurpose of this address book is tofacilitate communication betweenmembers of the CHSQ. Only thenames of those who have given usauthorization will be included inthe address book and it will onlybe sent to members of the CHSQwho are listed in it.
Thank you for participating in thisinitiative that will offer families away to contact each other awayfrom the activities that we offer.
Christmas Activities inMontreal for Families withYoung Children (0 to 6 yrs)Get out your busy end-of-yearagendas: This year’s activity forfamilies with young children in theMontreal area will take place onDecember 4. On the program: Avisit to the Biodome in themorning, accompanied by Caillou,a communal lunch and a Christmasfilm in the afternoon.
The cost to participate is $5 perfamily. In order to register, youhave to call us or send us an e-mail before November 15th (seeour coordinates on page 2).Thanks.
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Christmas Activity in Quebecor Families with YoungChildren (0 to 6 yrs)
This is an invitation for all familiesin the Quebec City area who haveyoung children. It’s a chance tomeet and have fun at the Quebecaquarium.
Saturday December 4, 2004,starting at 9:30 a.m. we’ll have aguided tour “The Discovery Trail”that’s specially designed forpreschool kids. The children cantake part in labs and learn a bitmore about the marvels of theaquatic world. The guided tour laststwo hours and, afterwards, we’llhave lunch together where we cantalk.
The afternoon program includes ashow with seals and polar bears!It’s very important to make sure todress warmly for the show (it’soutside of course) that lasts 15 to20 minutes.
A modest participation of $5 isrequired for each family (lunch isincluded). Are you interested? Wehave to confirm the number ofpeople for October 30th. Call me
quickly to reserve your place :(418) 663-2178.
Chantal Roy
2005 Family WeekendYou can jot this date down in youragenda right away. The next annualfamily weekend will take place inMatawinie from Friday March 18to Sunday March 20, 2005.
All the information you need forregistration will be sent in the nextissue of L’Écho du facteur.
FUNDRAISING
“Razothon” Organized forthe CHSQRoxanne Nadeau, a member of theCHSQ who sits on the Board ofDirectors as well as a number ofcommittees, had the excellent ideaof organizing a fund raising activitylast June in collaboration with hercamping club, le Kan Victoriaville.
Not only did they raise over $1100for the CHSQ, the Razathon, whichconsists of participants offeringmoney to encourage others toshave their hair off (in fact, a kind
of hair auction!). It seems they hada rousing good time doing it!
We want to sincerely thankRoxanne for this initiative as wellas all the donors and everyone whocourageously changed theirhairstyle and contributed to thesuccess of this activity.
$5000 Donation from theNational BankAnother of our members, ChantalVermette, raised funds for the CHSQwith another initiative; she askedfor and received a $5000 donationfrom the institution for which sheworks, the National Bank.
We raise our hats to this type ofeffort! It makes it easier for ourorganization to continue its worktowards improving the quality oflife for its members and we wishto thank Chantal very much as wellas the National Bank for thiswelcome shot in the arm.
Donations from MembersEach year, you’re solicited by manyorganizations to donate money thatwill help the cause they support.We’d like to ask you to think aboutmaking the CHSQ one of thesecauses.
The CHSQ is a registered charitableorganization, so we are able to emitcharitable receipts for any donationgiven. Of course, this receipt allowsyou to deduct the amount givenfrom your next tax declaration. But,even more, your donation will helpus maintain and improve the qualityof services we can offer you as wellas support research.
Each dollar counts. As some havealready done, you can also askmembers of your family, your closefriends or the company you workfor to get together and take up acollection that will be given to theCHSQ, which is, in fact, yourorganization. You’ll find a form inthis mailing to this effect.
Help us to improve your quality oflife and that of your family.Thank you! ∆
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Here are the members of the 2004 CHSQ Board of Directors. From left to right: RazekSyriani, Marius Foltea, Roxanne Nadeau, Jacques Roy, Mylene D'Fana, Patricia Stewart,Martin Kulczyk, Danielle Comeau, Laurent Pontbriand, François Laroche and AndréLaganière.
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How to Find a RegisteredDietician
- Visit www.dietitians.ca andsearch “Find a nutritionProfessional"
- Call your local public healthdepartment, hospital or communityhealth centre.
- Call the Consulting DieticiansNetwork at 1-888-901-7776
A registered dietician can help youmeet your nutrition needs bydesigning a personal meal plan.
You Definitely Should See aRegistered Dietician if you have:
- complications related to advancedliver disease, such as cirrhosis orfluid retention
- another medical condition, suchas diabetes or HIV
- a problem with weight loss orweight gain
- diarrhea for more than 3 days
- trouble eating well
- diagnosis of fluid retentionrequiring a low salt diet.
Herbal Remedies
Natural does not always meanssafe. Some herbs can do more harmthan good.
• Herbal products haven’t beenproven to cure hepatitis C or easethe symptoms.
• Some can be toxic to your liver.
• Some can interfere with interferonand other precribed medications.
Talk with your health care providerif you are taking or thinking abouttaking any herbal products.
Focus on Fluids
Most people need 6 to 8 cups offluids every day, unless your doctorhas told you to limit your fluids.Avoid letting yourself get thirsty.
ou may have discomforts—such as fatigue, nausea, vomiting,lack of appetite, diarrhea, tastechanges—from the symptoms ofhepatitis C or from the side effectsof prescribed medicines.
If you often have no appetite ordon't feel well and food just doesn’tappeal to you, you can lose weightwithout wanting to.
Make the most of each mouthful.If you cannot eat much, choosefoods that are high in protein andcalories.
Check your weight regularly. Seeyour dietician if you have difficultykeeping weight on, and see yourdoctor if the problem continues.
Fatigue
• Stock up on nutritious, basic,easy-to-prepare foods when youare feeling well.
• When you cook, make extra foodand freeze it.
• Have prepared snacks on hand(see “Snappy snacks” forexamples).
• Keep liquid nutrition supplementsin stock
• Ask friends and family to helpyou make meals.
Nausea or Vomiting
• Eat what you can, and eat mostwhen you feel hungry.
• Sample dry, bland foods to see ifthey go down well.
• Avoid spicy foods.
• Drink lots of fluids. Drink fluidsseparately from meals.
• Use liquid nutrition supplements.
• Learn to avoid your triggers, suchas the smell, taste or even thethought of some foods.
No Appetite or Feeling FullQuickly
• Eat smaller portions more often.
• Try different tastes to boost yourappetite: bitter, sour, salty, sweet.
• Drink milk, milkshakes, juice orfortified soy beverages instead oflow-calorie fluids like tea, broth,or coffee.
• Use liquid nutrition supplementswhen you need to.
• Do some light exercise beforeeating.
Diarrhea
• Eat smaller portions more often.
• Drink lots of fluids.
• Make eating a relaxing time.
• See your health care provider,who can recommend appropriateliquid nutrition supplements.
Taste Changes
If red meat tastes bitter:
• Try chicken, fish, baked beans,cheese, yogurt, eggs, peanut butterand other protein foods.
- Canadian Association for the study ofthe Liverwww.Ihsc.on.ca/casl
- Canadian Association of HepatologyNurseswww.livernurses.org
- Canadian Liver Foundationwww.Iiver.ca1 800 563-5483
- Hepatitis C Society of Canadawww.hepatitiscsociety.com1 800 652-HepC (4372)
- Canadian Hemophilia Societywww.hemophilia.ca1 800 668-2686 ∆
bySylvie LacroixNurse Coordinatorat the QuebecReference Centre for the Treatmentof Patients withInhibitors
eptember: synonym for backto school? Language scholarscertainly wouldn’t dare approvethis kind of semantic mistake. But,I’m pretty sure that for most peopleof all age groups, the month ofSeptember makes you think ofgoing back to school.
When the long summer holidaysare over, the rhythm of life seemsto change. Many people feel a kindof nervous energy. Children andtheir parents get ready for the firstday of school. New clothes, shoesand school supplies are bought onthe wave of an infectiousenthusiasm. Those who don’t havechildren can also feel a change insocial dynamics.
Even though the end of vacationbrings about a certain melancholy,we look forward to the gloriouspallet of autumn colours, like ripeapples freshly picked from theorchard and the magnificentcolours of the leaves. It’s even timeto start all kinds of new projectswhich, in no time, will bring us toChristmas.
For children with hemophilia andtheir parents, school is animportant stage in their lives. Forthe little ones who are just startingschool for the first time, it’s thebeginning of a learning processleading to autonomy that’ssometimes difficult. For the others,it’s the continuation of this process.
Each new school year brings newchallenges for the child withhemophilia and those around him.During the first years of school, thehemophiliac child learns torecognize his limits and to share
Some clinics have createdinteresting tools that can help. Forexample, Ginette Lupien, the nurseat the Eastern Quebec HemophiliaCentre, has written a little pamphletfor her clientele called "L’Enfanthémophile". This is a documentwith information about hemophilia,written for educators, to eliminateany worries they may feelconcerning this disease, to helpthem understand how to deal withchildren with hemophilia, how torecognize common bleeds and todetermine which sporting activitiesare safe.
What’s more, there are three othereducational documents publishedover the past few years that we’dlike to suggest. Here’s a resume oftheir contents:
1- Hemophilia: What schoolpersonnel should know
This is a small 15-page pamphletwritten by the nurses from theAtlantic provinces (CanadianHemophilia Nurses Association)supported by the CanadianHemophilia Society and BayerHealthCare.
The booklet is destined for teachersand other school personnel whomight worry when confronted witha child with hemophilia. Thepurpose of the booklet is to calmtheir fears by informing them abouthemophilia and teaching them howthey can help a child withhemophilia. The following topicsare covered: what is hemophilia,common bleeds, superficialbruising, cuts, hemorrhages that arelife-threatening, sports and otheractivities as well as absenteeism.
I think this booklet is interestingbecause of its layout and itsillustrations. Its format is simpleand handy. Instructions are succinctand adequate. I highly recommendit. You can get it from the CanadianHemophilia Society (National) or1-800-668-2686 or from yourHemophilia Treatment Centre.
his knowledge of his condition withhis teachers, his friends and thosearound him. Later on, when he getsto high school, he has otherproblems to face and must haveconfidence in himself in order tomake choices, keeping in mind hislimitations. He also has to decidewith whom he’ll share importantelements of his condition, such asthe principal, teachers and friends,
CEGEP and/or university bringsabout other questions, notablyconcerning self-infusion as well asmanaging and taking charge of hisown health concerns. This is thefinal transition period betweenchildhood/ adolescence and theworld of the young adult.
Parents guideand help theirchildren to getthrough eachone of thesestages.Sometimes, theyfeel very aloneand/or don’tknow how tomake theirchild’sintegration intoschool easier.There areresourcematerials thatmay help you, ifthis is yoursituation.
First of all,there’s the nursecoordinator atthe hemophiliaclinic. She’lllisten to you,advise you andfinally, offer anysupport youneed. You’ll have all kinds ofquestions such as what kind ofinformation should I give so thatmy child isn’t ostracized orneglected? How do I establish anemergency plan? What should thisplan include? No matter what, don’tmake any hasty decisions andshare your concerns with yournurse.
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2- Von Willebrand Disease: Whatschool personnel should know
This little booklet is six pages longand helps explain Von WillebrandDisease, common bleeds, thosethat are more dangerous andemergency measures required. Theemotional needs of the student arediscussed, as well as some of thereasons that justify the absencefrom school of adolescents whohave abundant menstrual bleeding.
Also written by the hemophilianurses from the Atlantic provinces(Canadian Hemophilia NursesAssociation), supported by theCanadian Hemophilia Society andAventis Behring Canada, this is an
appropriate resource for studentswith this condition. It can also beobtained from the CanadianHemophilia Society (National) or1-800-668-2686 or from yourHemophilia Treatment Centre.
3- Nous vous confions notreenfant
This booklet is twenty pages longand was designed by parents ofchildren with inhibitors. This is theideal discussion tool to help dealwith specific needs which alsooffers possible solutions for childrenwith inhibitors, for both day carepersonnel and those in a schoolsetting.
It’s an extraordinary resourcebecause it’s written by parents wholive with this situation. It’s worthusing. Copies can be obtained bycontacting the Inhibitors Centre at514-345-2360.
We hope this offers you extrainformation to help you bettermanage your child’s return toclasses. We’d like to take advantageof this occasion to wish you a lovelyautumn filled with beautiful coloursand new challenges for you tomeet. ∆
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CHSQ Camp inSt-Raymond-de-Portneuf
ne month ago, I was at CampPorneuf in Saint-Raymond whereI did the following things: canoed,kayaked, swam, went camping,played games and rode the bananaboat.I also learned how to do my owninfusion. The camp councillorswere very nice, it was a greatexperience.
Julien Veillette
uite a challenge to try newactivities with new friends!But don’t worry; the activities inCamp Portneuf were both fun andinteresting. The camp councillorswere great. And very good. Therewasn’t any time to be bored. Theweek sped by like lightning. What’smore, the weather was perfect.What more can you ask? It’s a greatexperience I’ll always remember.
Louis-Charles Martin
udrey Ann and I were reallylooking forward to going back tocamp because we always comehome with all kinds of memories.This year, our little sister, Justine,came with us. It was her firstexperience. All three of us had alot of fun but, unfortunately, oneweek just goes by too fast!!!The activities were all veryinteresting and well organized andwe really enjoyed horseback ridingand the banana boat. The dormswere nice, big and clean!!! Themonitors super cool and even themeals were great…Camp Portneuf was one of the mostfun for us and we hope we’ll beable to go back next year. On mybehalf, and for my sisters, thanksvery much to those who made itpossible for us to have a great weekin a camp like this!Thank you!
Antoine, Audrey Annand Justine Page-Lacasse
Camp Exchange with Ontario
loved Camp Wanakita becauseeveryone was friendly andrespectful. We had a good timetaking part activities that were wellorganized by the camp counsellorsand that were a lot of fun.Since this was my second yearthere, I met friends that I’d madethe first time I went.The days are full and there’s notime to get bored. All campers goon a short canoe trip for 2, 5 or 7days (depending on what theychoose). The place where we sleepis very clean. We can become greatfriends with our cabin mates andall the others because we oftenhave activities involving all cabinsduring the evening. Going to CampWanakita is a great way to get awayfrom the yearly routine.
Thanks to the Canadian HemophiliaSociety – Quebec Chapter, formaking it possible for me to livethis unforgettable experience. ∆
Keith Hunter
chosen by the provincial boards,on a pro rata basis. There are atotal of 23 positions on this Board.Quebec has the right to hold 3positions on the CHS Board ofDirectors, as well as to nominatepeople for the positions of directors-at-large. The responsibility of theNational Board members is to makedecisions that will benefit allCanadians living with a bleedingdisorder, not only those in theirindividual provinces.
Right from the start, the Nationalorganization worked to developstandards for the care andtreatment of hemophilia. Many ofthe comprehensive care servicesyou enjoy were set out in adocument produced in 1978 at anational conference organized bythe CHS in Winnipeg.Representatives from eachprovince, including people withhemophilia as well as the medicalpersonnel who cared for them,gathered to discuss how to improvehemophilia care across the country.
Over the years, the CHS has alsodeveloped educational materialsfor families living with bleedingdisorders. Most of the documentsyou received when you or your
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child was diagnosed with a bleedingdisorder were designed, written andprinted by the CHS - National.
The National is also highly involvedin advocacy efforts. A great deal ofthe work that goes into lobbying forbetter treatment standards and forthe safety and availability ofproducts as well as compensationfor infections through the bloodsystem is done at the National level,along with support given toProvincial chapters when requested.The CHS was the first organizationin Canadian history to achievefinancial compensation for itsmembers for a medicalmisadventure.
By sitting as members of a CHScommittee, the hemophiliacommunity from across Canadabrings the needs of the communityto the National staff and offers ideasto help respond to these needs. TheNational staff is responsible for theoverall planning, organization andimplementation of ideas anddecisions made by the variouscommittees and the Board ofDirectors. However, it is theinvolvement and cooperation ofvolunteers from all provinces onvarious committees that make thispossible.
Provincial chapters generally dealwith more specific, direct services,such as summer camps, familyweekends, and newsletters withinformation on provincial items andlocal activities. Until 2002, onlyQuebec, Ontario and Manitoba hadfull-time staff to help volunteersorganize activities and fundraisingefforts. Since then, the CHS hashired a staff person forSaskatchewan and one person forthree of the Maritime provinces (NB,NS and PEI) to help these provinceshave access to the same type ofquality services that the otherchapters with staff enjoy.
Future articles will inform you aboutspecific programs, advocacy efforts,comprehensive care and fundraisingover the years. They will alsoexplain the role that the Nationalor provincial chapters play in eachof these areas. ∆
ou may have seen or hearda reference to the CHS “National”and wondered what the differencewas between the National and theprovincial chapter. This columnwill try and clarify the roles of eachof these organizations, includingtheir responsibilities andrelationship.
But first, a quick history. TheCanadian Hemophilia Societyofficially started in Montreal in 1953under the leadership of FrankSchnabel, a young man withhemophilia, working with Dr. CecilHarris and other families in thearea. Based in Montreal, thepurpose of this group was to helpfamilies across the country livingwith hemophilia have access tobetter care. Other people had thesame sort of idea in otherprovinces, but worked on a moreprovincial/local level.
In 1959, the CHS officially becamea cross-country organization (thusthe term the “National”) withrepresentatives from a number ofprovinces sitting on the board ofdirectors. By 1968, a provincialchapter existed in every provincein Canada.
With the creation of the Nationalorganization, Quebec needed tobecome a chapter in its own rightand so, in 1959, Douglas Page tookover as the first President. Theorganization was officiallyrecognized as the Quebec Chapterof the CHS.
Each province has a charter andcharity number independent of theCHS-National, with it’s own boardof directors and financialresponsibility. The National Boardof Directors is made up of delegates
Jean-Sébastien Gravel took advantage of his stayat camp to do a bit of canoeing.
A few of our young hemophiliacs who attended summer camp this year. Fromleft to right: Antoine Page-Lacasse, Luis Enrique Rodriguez, Kevin Blanchette,Guillaume Leduc, Julien Veillette and Etienne Montplaisir.
Julien Veillette was able to learn to self-infusion at camp this year,thanks to the supervision of Ginette Lupien, the nurse coordinatorfrom the Quebec treatment centre.
Camp Portneuf is located in an enchanting spot on the shore ofLake Sept-Iles in St-Raymond-de-Portneuf.
Banana boat rides were very popular during camp; just ask KevinBlanchette.
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See you soon!
receive a scholarship for $1000, andDavid, considering the excellentquality of his application, will receivetwo $1000 scholarships. We’d liketo thank all candidates whosubmitted their application and weencourage them to reapply next year.
Bravo, David and Mathieu, and allthe best in the pursuit of yourstudies. ∆
A.O.
The publication of this newsletter has been madepossible thanks to the financial contribution of these
pharmaceutical companies:Novo Nordisk and Baxter
Mathieu Montreuil(photo on the left) andDavid Pouliot (photo onthe right) were awardedstudent scholarships for$1000 from Bayer. Wealso see Patricia Stewart,President of the CHSQ inboth photos, and AlainVaugeois, StrategicPartners Director forQuebec from BayerHealthCare Canada.
Because of the quality of his academicrecord, David Pouliot was alsoawarded a $1000 scholarship fromBaxter. David is seen with PatriciaStewart, President of the CHSQ, andJeff Bakker, BiopharmaceuticalTechnical Specialist for Quebec andthe Atlantic with Baxter Bioscience.
CHSQ Scholarships inCollaboration with Bayer andBaxter
e’re pleased to announce thenames of the winners of the CHSQscholarships offered in collaborationwith Bayer and Baxter.The committee responsible forselecting the winners chose twocandidates, David Pouliot andMathieu Montreuil. Mathieu will
