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CHS-MC Chapter Update June 25, 2019
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In this Issue:


MBDP Nurse, JTG Camping Trip, Family Camp, Medical News, 2019 Golf Tournament, CHS Videos

Manitoba Bleeding Disorders Nurse Hired

 

The Manitoba Bleeding Disorders Program has hired Tracy Nacionales, RN to cover Crystalynne’s maternity leave. Tracy has a background in pediatric Emergency and pediatric OR. Tracy spent some time with Dawn before she left and some members have already met her. Tracy’s first day is Thursday, June 25th. They are actively looking to fill the Nurse Coordinator position.

JTG Camping Trip Rescheduled to September  
 



There was a lot of interest in the Just the Guys Camping Trip at Riding Mountain National Park. The original date of June 21st to 23rd just didn’t work for all but 4 campers. Eric and Jacob were able to change the O-Tentik reservations to the weekend of September 13th to the 15th! The boats are still available to rent that weekend and there are heaters in the O-Tentiks!

The Youth Committee has booked three oTENTiks for the weekend and will provide transportation to the park. Enjoy the beauty of Riding Mountain and the activities the park has to offer. There will be a formal education session on Sunday morning.
Curious about oTENTiks? It's "glamping" at its finest! Parks Canada oTENTIk
We hope you will consider coming! The guys who went last year want to go again so you know it was worth going. In their 2018 evaluations they wanted us to tell you….

  • Great activites + location
  • It was a good chance to talk to other guys with bleeding disorders and hear how it affects their lives.
  • An excellent time to get to know more of the community and hear some similar life stories. Great to learn and feel more comfortable with my hemophilia.
  • It's a great way of connecting to the other guys
  • People should know how non-physically demanding it is.
  • People should know this is camping lite. It's a great intro to the idea of camping.

 
Please visit Registration Form to download the form. Fill it out, and email it back. Please get it in as soon as possible so we can arrange transportation. If you choose to drive and are willing to take some guys along, we will pay your gas. The only cost to you is any treats you choose to bring.

Thank you to the JTG Camping trip sponsors: 
 

It's Almost Family Camp Time! 
 

Chapter families are getting ready for Family Camp at Luther Village July 14th to the 20th. We are excited to have Rose Jacobson, RN accompanying the families as our nurse volunteer. We are also happy to have pediatric physiotherapists Matthew Thiessen and Natalie Ruest coming out for two days. They have an activity planned for the campers that we know everyone will love.

Just a reminder to our campers to have your medication and supplies ready to go! Don’t forget your bug spray and a fan! Have a wonderful time!

Thank you to our 2019 Family Camp Sponsors
 

Medical News

 

Provinces Approve Hemlibra for Inhibitor patients – A special thank you to Chapter member James Waldner who worked so hard to advocate to have this medication available for members with Severe Hemophilia A and inhibitors.

Health Canada approved Bayer’s extended half-life product Jivi for Hemophilia A patients over 12 years old. - Please note that Health Canada approval is the first step in many steps before members can expect access to a medication.

Health Canada has approved Hemlibra for Severe Hemophilia A patients – Please note that Health Canada approval is the first step in many steps before members can expect access to a medication.

Can You Help with the 2019 Golf Tournament? 

 

There are a number of ways that members can help with the tournament and we could use your help! 
1) Tell your golfer friends! This is a fun tournament, the volunteers are fantastic and Bridges is a gorgeous course. The more golfers we have, the greater our capacity to provide programs and services. Registration info is below.
2) Sponsors - Can you forward the tournament information to your employer or to a contact at a company? If you are uncomfortable doing so, send us their contact info and we'll do it for you! The Sponsorship is posted on the Chapter website.
3) Make a Donation - We need prizes for the golfers. The less we purchase, the more funds go into programs and services. If you have no idea what kind of prize to donate, gift cards from places like Golf Town, Walmart, Canadian Tire, Cabela's, and Costco will help us as either a prize or allow us to purchase what we need. Any gift card is appreciated! 
4) Volunteer - It takes a small army of smiling faces to execute a golf tournament. We have been so lucky to have wonderful volunteers working with our golfers. There are a variety of positions so if you are interested, contact the office and we'll find a job that works for you! 
Proceeds from the Golf Tournament help CHS-MC and CLF-MR provide education, services, support and advocacy for our members living with hepatitis, liver disease and bleeding disorders. We hope that you will pitch in and help! 

2019 Annual Golf Tournament
Tuesday Sept 3rd, 2019
Same Great Course: Bridges Golf Course
For only: $115
Registration includes a light lunch, 18 holes, power cart, contests & prizes! 
To Register & Pay with PayPal Click here 
To Register & Pay with Chapter Office Click Here

CHS has posted on their YouTube page, CanadianHemophilia, videos of the speakers who presented at the Medical Symposium at Rendez Vous this past May. This video is a testimonial from John Konduros from Ontario: “A Canadian who received hemophilia B gene therapy”

Dates to Watch! 

Upcoming Chapter Office Closures: 
Wednesday June 26th
Thursday June 27th
Tuesday July 2nd
Monday July 22nd and re-open Monday August 5th
 
July 14- 20th - Family Camp
September 3rd  - 2019 Golf Tournament
September 13-15th - Just the Guys Camping Trip 
October 6th - Run4Your Cause

Thank you Chapter Update Sponsors! 

 

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


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