CHS-MC Chapter News May 2023
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In this Issue: 

Chapter Board 2023/2024, WFH Twins of the Year, CHS Rendez-Vous, CHS-MC Award at RV, 2023 Golf Tournament, Know Your Flow, Run 4 Your Cause  

Chapter 2023/2024 Board of Directors

Thank you to everyone who attended the 2023 Annual General Meeting. Thank you to this great group of volunteers who will serve the Chapter as the 2023/2024 Board of Directors.

Twinning Award from World Federation of Hemophilia (WFH)

The WFH is happy to announce the 2022 Twins of the Year for both, the Hemophilia Organization Twinning (HOT) and the Hemophilia Treatment Centre Twinning (HTC) programs. Congratulations to all of the partners involved!

Congratulations to the Chapter Twinning committee and our partners in Serbia! We are so proud of the work that you do. CHS-MC Twinning Committee: Milena Pirnat (Chair), Dragan Tomic, Nick Czehryn, Alex Czehryn, Deni Pirnat 

CHS Rendez-Vous 

The CHS welcomed back community members and health care professionals to Rendez-Vous, in person! Chapter member and Manitoba Bleeding Disorders Program members share their experience attending Rendez-Vous:

Crystalynne San Juan RN BN, Nurse Clinician, Manitoba Bleeding Disorders
Photo L to R:
Crystalynne San Juan, Patty  Phrakonkham-Ali, Khristine Cheng
This was my first Rendez-Vous experience as a nurse in the Bleeding Disorders Program, and for sure NOT my last! There were so many things to learn and so many people to meet. I am truly grateful to have had the opportunity to meet all the wonderful nurses of the bleeding disorders community across Canada. I was able to brainstorm solutions to some of the issues I have come across in our clinic and learn valuable information/techniques that I hope to implement in our bleeding disorders program to make it even  better than it already is! Not only was it a very informative conference especially regarding Gene Therapy and “up and coming “ treatments (which we  are very excited for!), there was also time to have fun and celebrate the many successes that our Manitoba bleeding disorders community have achieved. I was very happy that I was able to witness our colleague and friend Patty receive the “Appreciation Award” and the Manitoba Chapter for the “Chapter Recognition Award”, all well- deserved!  Overall, this was a great experience!

Joseph Penner, CHS-MC Youth Delegate
 CHS Youth Delegates
I was privileged to attend Rendezvous as the youth delegate for the Manitoba chapter. I was heavily impacted by the youth delegates meeting, from the rich wisdom from Paul Wilton as well as the connections I made with the people my age with similar life stories. I witnessed throughout the conference the appetite for education, to better care, to better understand, and to better treat. I got a sense of networking not just within the chapter groups but also the professionals representing pharmaceutical companies and health care departments across Canada.
I was inspired by the sessions seeing how everyone is working together to adapt to the major changes to treatment that are now available with session topics like “strategies to better serve the mild bleeding disorder population” and “Women with bleeding disorders.”
The conference reflected a hope for a country free of pain from inherited bleeding disorders.

John Rogasky, CHS-MC Board Member
The CHS Rendezvous 2023 took place in Niagara Falls, May 5th to the 8th and I had the privilege to attend on behalf of the Manitoba Chapter! This year, Rendez-Vous was focused on a variety of topics, but most intriguing to me were the sessions on Gene Therapy and Women with Bleeding Disorders.
The discussion of Gene Therapy opened with the current state of affairs and then moved to an interview with Luke Pembroke from Greenwich England who discussed “Why I said yes to gene therapy”. Luke’s approach to having the treatment was based on life choices and quality of life. On the other side of the discussion was Rick Waines and why he said “No” to gene therapy. Interestingly enough, Rick cited the same reasons as Luke, but with the opposite results.
Women with bleeding disorders is a topic that deserves far more attention than was allotted to the subject. The amount of emotion and passion that was brought forth in Saturday’s session tells me that we need to continue with this topic at all Chapter levels.
Finally, Rendez-Vous is very much like coming home. The families, friends, and associates that we have met over the years get reconnected during our time at Rendez-Vous. Upon my arrival, I was greeted by Chantel Raymond with a warm hug and discussions of family and Chapter events! I was also pleased to be able to receive the “Chapter Recognition Award” on behalf of the Chapter, as well as present the “Award of Appreciation” to Patty Phrakonkham-Ali!

Dr. Sara Israels, MD FRCPC
The CHS Medical and Scientific Symposium on Friday May 5th was a day packed with important topics, excellent speakers, and meaningful discussion.  It was wonderful to have an in-person national meeting and get to see so many friends and familiar faces, after the years of remote conferences. Congratulations to the organizing committee for giving us this great program.
For me, the first session of the day on innovative coagulation therapies was particularly engaging. And the highlight was the talk by Dr. Johnny Mahlangu who joined us virtually from Johannesburg to discuss these innovative therapies through the lens of lived experience. We have all become very familiar with the results of the clinical trials that led to the approval and access to some of the new therapies. In pediatric care, the most significant of these has been access to emicizumab (Hemlibra).  It was important to hear from Dr. Mahlangu that the lived experienced with emicizumab parallels what we learned from the clinical trials. In Manitoba, we started to transition children with severe Hemophilia A to emicizumab about 16 months ago, and Dr. Mahlangu showed us that most individuals continue to do well as time goes on.  It was particularly interesting to see the data from his own program, underscoring the advantages that emicizumab has for those with a history of frequent bleeds and target joints. I took away some key lessons from his presentation.

Sandra Penner, CHS-MC Board Member
Rendez-Vous in Niagara Falls was fantastic. The thing I enjoyed most is being in a room full of patients, caregivers, nurses, doctors, physiotherapists, researchers, social workers participating in the conversation with the goal to bring better care to patients with inherited bleeding disorders. A conference like this, that puts all the voices at one table, the medical professionals as well as the patients and caregivers, is so valuable and gives a richness of experience and knowledge that is not there if it is one group alone.  
I learned so much from the sessions. Especially applicable for me was the sessions on mild bleeding disorders. With the new treatments available so many of our severe patients now have more mild bleed patterns. I was able to learn so much that was applicable to our situation.  I am also excited that we are moving the conversation of women and girls bleeding forward with sessions both medical as well as with patient advocacy.   
The banquet and awards ceremony was just fun and such a great opportunity to meet people and to celebrate the work of the chapters across Canada as well as to honour individuals for their contributions to the bleeding disorders community. 

Milena Pirnat, Chair Women & Girls Advocacy Committee
Photo: L to R Natalie Philbert, Hemophilia Ontario & Milena Pirnat, Hemophilia Manitoba
Rendez-Vous 2023 was a very well attended and excellently organized event by CHS. It was exceptional as it marked a return to an in-person gathering that we all long for after the COVID-19 pandemic. This year it was a celebration of being together again. The Medical and Scientific Symposium was entitled: “New beginnings in changing landscape of care and treatment”, with topics that include non-factor replacement therapies, women and bleeding disorders, mild hemophilia, and gene therapy.
I was sponsored and invited by CHS to present during the Community Initiatives plenary on Women with Bleeding Disorders, together with Natalie Philbert from Hemophilia Ontario. Our Community Initiatives presentation was about CHS-MC’s community collaboration with Hemophilia Ontario on the women and girls with inherited bleeding disorders project. This session was very well attended and received excellent feedback from all, especially women.
We enjoyed the National Awards Banquet, to honour the leaders in our community. Our Chapter and our social worker Patty Phrakonkham-Ali received awards. We were very proud of our participation and our successes in the wider national context. Only thing missing at this event was Chris, as she is our best supporter and helps volunteers accomplish so much! 

CHS Recognizes CHS-MC at Rendez-Vous

Congratulations to the amazing group of Chapter volunteers who were awarded the Chapter Recognition Award for the virtual Spring Fling fundraiser held in 2021.  

Covid-19 did not allow a Gala in 2021, but this group made sure we had the resources to continue to deliver programs and services. The virtual event included a three course dinner, pairings from Manitoba Liquor Mart, a 50/50 and raffle as well as an online program and trivia competition. Thank you for your efforts and congratulations on your well-deserved award! 

Spring Fling Committee: Dana Beljanic, Janet Bishop, Lynda Regan, Roan Regan, Jeff Regan, Cory Prestayko, Danielle Figler, Christine Keilback, Shane Keilback, Katherine Cameron and Bruce Cameron 


Annual Golf Tournament  - New Date! New Location! 

The Canadian Hemophilia Society, Manitoba Chapter invites you to join us at Bel Acres for a great day of golf, contests, games and fun! All the proceeds from the tournament go to programs and services that support Manitobans managing inherited bleeding disorders. 

We welcome single golfers to teams of 4 golfers. We will be sure to put you with some great people!  2023 Golfer Registration

Would you be interested in being a tournament sponsor? We have many different ways you can participate from a Gold level sponsor that includes a team of golfers to Friends of the Chapter by donating a prize.  2023 Golf Sponsorship Package


Know Your Flow - Copies Available from Office

Novo Nordisk Canada has partnered with Dr. Anthony Chan and the team at the McMaster Children’s Hospital to co-develop an educational booklet for girls with bleeding disorders to help prepare them and their caregivers for menarche (the first menstrual period). 

This booklet was developed with input from a multidisciplinary group of 27 health care providers. It includes perspectives from pediatric and adult hematology, obstetrics and gynecology, nursing, physiotherapy, social work, primary care and emergency medicine. Importantly, it was also shaped by the lived experiences and advice shared by 19 girls and women with bleeding disorders and their caregivers from across Canada. Together, their insights were brought together in Know Your Flow_A guide to periods when you have a bleeding disorder (EN)

We now have copies of this excellent resource in the Chapter office. If you would like a copy, please contact us at or call 204.775.8625. We are happy to get a copy to you!


Run 4 Your Cause 

CHS-MC is one of the great causes runners or walkers can choose to support. We are happy to be part of this healthy living event.

Attention current Manitoba Runners' Association members, and hi there potential future ones! If you register before May 31 you get $10 off! That's double the usual discount for MRA-sanctioned events.
If you aren't a member already, or haven't yet renewed your membership, we make it easy for you to do it all at once.
Our 5K Prediction event is part of the #ClassicSeries and the 5K Prediction and 3.3K Try are both part of the #YouthSeries - earn your points and support a great cause while you're at it.
Read more about the MRA and how they support the Manitoba running community here:
Register for Run 4 Your Cause here:

Copyright © 2023 Canadian Hemophilia Society, Manitoba Chapter, All rights reserved.

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