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CHS-MC Chapter Update October 11, 2019
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In this Issue:


Study Opportunities, CHS Case for Support, Carrier Testing, MBDP Update, Foot Massage for a Cause, Grey Cup Pool in Gimli, MyCBDR

Study Opportunities

 

The CHS would like to bring your attention to various research studies which are currently recruiting. You can find more details about each study at www.hemophilia.ca/opportunities-to-participate-in-research.
As mentioned in the past, research is crucial to the advancement of care and treatment. These studies are a concrete way of moving one step closer towards a better quality of life. However, they need our community participation to gather sufficient data so as to be relevant.
Studies currently recruiting are:

  • Survey on Canadian patient/caregiver perspectives with regards to the possible introduction of innovative therapies for people with hemophilia B
  • Bone health in symptomatic carriers of hemophilia A (in English only)
  • Pain management in hemophilia (in English only)
  • Are there inequities in access to care amongst certain groups of patients with bleeding disorders?

CHS Member Case for Support 


Were it not for the CHS, our Chapters and members would not have the great access to clinic and product we are privileged in Canada to maintain. Our young kids would not have access to prophylaxis to lead healthy active lives. They would not be able to dream of a day where they could play soccer or be a ballerina and lead normal lives.
Throughout the years the CHS has weathered many storms and has always risen to the top stronger than before. In the absence of a great therapeutic storm, a silent one has been eroding the CHS and its very future.
Without the direct support of our members going forward, the CHS, as we currently operate, will fail to exist.
The time is NOW. Can we count on YOU
 
This is the link to the CHS-MC fundraising page.
http://weblink.donorperfect.com/theCanadianHemophiliaSociety/shareourwordsorg/CHSManitobaChapter
 
Please consider:
·       Sharing our social media posts on your Facebook page, Instagram or Twitter (The links to the CHS-MC social media feeds are located at the end of the Chapter Update)
·       Making a donation
·       If you are willing to create your own fundraising page as part of this campaign, click on the “View Organization’s Page” from our page and you will see the link to create your own fundraising page.

Carrier Testing for Adult Women; First Steps 
 

Adult women with family members with hemophilia, may want to know if they are carriers of hemophilia. To begin the process, you need to ask your Primary Care Provider for a referral to the Manitoba Bleeding Disorders Program. A formal referral to the Program gives them a medical professional to communicate with, and also creates a formal chart in CancerCare Manitoba for your records.
It is important to tell your Primary Care Provider to address the referral to the Bleeding Disorders Program and send it to the Referrals Office at CancerCare Manitoba. Please tell the medical professional the referral needs to say ‘family history of hemophilia, and potential carrier’. If you have had any prior bleeding issues, this is the time to highlight those.
Once the Manitoba Bleeding Disorders Program has received the referral, they will contact you to arrange a clinic appointment.

MBDP Member/Coverage Update

 

Manitoba Bleeding Disorders program social worker, Patty Phrakonkham-Ali will be away from October 24th to December 7th. Members will continue to have service from the Social Work Department at HSC. If you require service, please notify the MBDP nurse, Tracy Nacionales.

There will be no nursing coverage on Friday, November 9th. Please page the hematologist on call if you require assistance. Paging instructions are on the MBDP nurse’s answering machine at 204.787.2465 and on the Chapter website PAGING

Did you know…

You can easily access all the Manitoba Bleeding Disorders Program members contact information at Care Team Contacts.

Foot Massage for a Cause
 

Message from Forget Me Not Body Image:
Get ready for the upcoming holiday season with a relaxing foot massage while helping a good cause.

Sunday November 10, 2019
25 minute foot massage
$25 per massage (cash only)

Appointments must be booked in advance you can call us at 204-831-7940 or send us an email at forgetmenotdayspa@gmail.com to reserve your spot!

All proceeds for this event will go to the Canadian Hemophilia Society, Manitoba Chapter.
Last year along with our angel sales we raised 1,365! Help us donate more this year.

Message from the Chapter:
We are looking for volunteers to welcome people coming for a foot massage on Sunday November 10th. Volunteers will hand out information on women and inherited bleeding disorders. The shifts are between 10 am and 3 pm at 3073 Ness Ave.

Grey Cup Pool Tickets on Tour! 
 

Chapter member Linda Laxdal has arranged two tables to sell Grey Cup Tickets in Gimli, Manitoba. Thank you so much Linda! You can get tickets from Linda at the following:

Saturday October 19th at Sobeys 94 7th Ave

Saturday October 26th at Red River Co-op 83 Centre St

We are still looking for volunteers to help with the following tables in Winnipeg. Wayne has arranged for the volunteers to be inside the Sobeys at Unicity so it won't be cold this year! 

Friday November 15th at HSC – shifts between 9 am to 3 pm
Saturday November 16th at Sobeys Unicity – shifts between 9 am to 4 pm
Friday November 22nd at HSC – shifts between 9 am to 3 pm
Saturday November 23rd at Sobeys Unicity – shifts between 9 am to 4 pm
MyCBDR: The best way to report treatments & bleeds to MBDP

Dates to Watch! 


October 19th - Grey Cup Tickets Sobeys Gimli
October 26th - Grey Cup Tickets Co-op Gimli
November 10th -  Foot Massage Day at Forget Me Not Body Image
November 15th -  Grey Cup Tickets at HSC 9 am to 3 pm
November 16th -  Grey Cup Tickets at Sobeys Unicity 9 am to 4 pm
November 22nd - Grey Cup Tickets at HSC 9 am to 3 pm
November 23rd - Grey Cup Tickets at Sobeys Unicity 9 am to 4 pm

Thank you Chapter Update Sponsors! 

 

 
Copyright © 2019 Canadian Hemophilia Society, Manitoba Chapter, All rights reserved.


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