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CHS-MC Chapter Update August 13, 2020
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In this Issue:


Message from the President, Treatment Room, Ordering Resources from the Chapter, Winnipeg Foundation Grant, CHS Virtual Camp, 2020 Standards of Care, Ageing with a bleeding disorder

Message from Milena Pirnat, Chapter President 

Dear Members,
I hope you are enjoying outdoor activities this summer, as the COVID-19 crisis has been long and stressful for most of us. Nevertheless, our activities here at CHS-MC have been consistent this summer. We have been collaborating with members of the Manitoba Bleeding Disorders Program (MBDP) to ensure that patients get adequate support and education during these challenging times. Also, we are hoping to organize educational sessions with the MBDP in the fall. If you have any questions or have some ideas for these sessions, please feel free to connect with us and stay tuned!

Our Board is working on a five years Communication plan and is also involved in strategic planning process intended for CHS. As you know, your favorite program, summer camp was cancelled this year and we worked with CHS team to help them organize CHS first virtual camp that was successful. Thanks to Chris for designing amazing Escape Room for fun and educational purposes. At this time we also have some resource Kits lined up for you. Please, check it out and call Chris for more information.

Our International activities (Serbian Twinning and advocacy efforts for Bosnian Hemophilia Association to get access to Hemlibra), continue at this time. We will update you on these efforts in our next newsletter. I can assure you that we have amazing team of volunteers, great executive director and we are working as a good team to ensure the best support for you in these critical times. Always feel free to connect with us, ask us questions and voice your concerns.
I wish you a stress free and a bleed free rest of the summer!
                                
Stay safe,
Milena

Treatment Room 

COVID-19 has created the need for additional space for CancerCare patients that require isolation. The Bleeding Disorders Treatment room on the 3rd floor of the Mc Dermot Avenue building is being accessed by CancerCare more frequently, in consideration of those patients. There may be times when a member will seen in an alternate treatment area.This will continue until such time as restrictions and precautions for COVID-19 are relaxed.

However, CancerCare recognizes that bleeding disorders patients are also important and require timely and appropriate care. If you experience any difficulty getting access to timely care or receiving care in an appropriate treatment setting, please let the Chapter office know.
204.775.8625 or info@hemophiliamb.ca 

Order Resources from the Chapter Office
 

It has been a long time since we have been able to offer our members resource materials in person. We miss seeing families at clinic and Family Camp. We had an in-person education session in January but haven’t been able to get together since. We want to be sure that you can still access the material you need to help you manage your bleeding disorder.
Please download the fill-in-able PDFs Children’s Books on Bleeding Disorders and Bleeding Disorders Resources Order Form and check the books you would like. Email the Chapter office at info@hemophiliamb.ca and attach your order(s). We will deliver orders within Winnipeg and mail the orders outside of Winnipeg.

Children’s Books about Bleeding Disorders Order Form

Adult/Parent/Family Books on Bleeding Disorders Order Form

CHS has a dedicated section of their website that has more to offer. www.hemophilia.ca/print-catalogue/ Many of these publications can be downloaded.

We have some other items in the office that are available: tourniquets, squeeze balls and hot/cold rice bags. For families with children with a bleeding disorder, we have camp kits from Bayer. Included in the cooler bag is a water bottle, a mini-sharps and a hot/cold pack with a Velcro strap. If you would like any of these items, please let us know in your email.


Winnipeg Foundation Stabilization Grant  



The Chapter is very grateful to the Winnipeg Foundation for approving our application for a Stabilization Grant. The grant replaces the lost income from the 2020 Grey Cup Pool fundraiser. The Grey Cup Pool fundraiser provide the funds necessary to administer the Chapter’s Member Services Program. The Member Services Program reimburses members parking at HSC, provides medical identification jewelry, wheelchair rentals, product delivery from CBS, accommodation funding for our rural members and more.

To learn more about the Winnipeg Foundation’s community response to COVID-19 please visit www.wpgfdn.org.


Thank you to CHS Virtual Camp Volunteers
 


Thank you to Dominic Jones-Bieringer, Milena Pirnat, Hélène Bourgaize and Rachel Leslie for all your help creating the Escape Room for the CHS Virtual Camp! It was great to work with all of you!! Thank you to the CHS planning committee for a great experience!

2020 Canadian Integrated and Comprehensive Care Standards for 
Inherited Bleeding Disorders 



Congratulations to the amazing working group that created the current Canadian standards of care for inherited bleeding disorders. Our very own Kathy Mulder was co-chair of the group that created this important document for the care and treatment of people with inherited bleeding disorders. It is important to familiarize yourself with the standards. The introduction is a fascinating read as it outlines all the changes to our community since the first set of standards released in 2007.

2020 Canadian Integrated and Comprehensive Care Standards for Inherited Bleeding Disorders

Chapter member Peter Czehryn
While preparing for the CHS’ national ageing retreat in 2018, Learning to learn and passing it on, we recognized that we had an opportunity and an obligation to learn from the participants: to recognize their life experiences with bleeding disorders and to share this knowledge with the larger bleeding disorder community.

We hope these interviews shed some light on the world of ageing with bleeding disorders.

It was an honour to be trusted with these stories.

To see all the videos: www.hemophilia.ca/in-my-time

Thank you Chapter Update Sponsors! 

 

 
Copyright © 2020 Canadian Hemophilia Society, Manitoba Chapter, All rights reserved.


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