In this Issue:

Hemophilia Study, CHS Scholarship/Bursary, AGM Save the Date, CHS-MC Award Nominations, All About Mild Hemophilia, Gala Early Bird Draw, Family Camp 2022, World Congress Program, Gala Course Sponsors.

How do you make decisions about your/your child's hemophilia treatment?

We are exploring how patients with hemophilia and caregivers of children with hemophilia engage in decision-making together with their healthcare team, a process called shared decision-making (SDM). The research is being done by the team at Sprout Health Solutions on behalf of Hoffmann-La Roche Limited.
What does the study involve?
You will be asked to participate in a conversation with your peers (a focus group) and/or a one-on-one interview. Conversations will explore what impacts your shared decision-making and possible tools that support your conversations with your healthcare team. You will receive $75/hr compensation for your time.
Who is eligible?
● Adults (18+ years) diagnosed with moderately severe or severe hemophilia A or B, without current FVIII inhibitors and currently receiving prophylaxis or on-demand treatment OR
● Adolescents (12-17 years) diagnosed with moderately severe or severe hemophilia A or B, without current FVIII inhibitors and currently receiving prophylaxis or on-demand treatment OR
● Caregivers of children (<12 years) with moderately severe or severe hemophilia A or B, without current FVIII inhibitors currently receiving prophylaxis or on-demand treatment
● Can speak fluently in English
Please note, adolescents eligible for the study are required to have consent from their caregiver prior to participation.
If interested, please contact SDMstudy@sprout-hs.com

CHS Scholarship and Bursary Program Deadline April 30th, 2022

The CHS James Kreppner Memorial Scholarship and Bursary Program is a posthumous tribute to James Kreppner, a long-time volunteer and member of the CHS Board of Directors, and a highly respected and exemplary activist. He passed away in 2009 from complications related to HIV and hepatitis C. The CHS James Kreppner Scholarship and Bursary Program is an ongoing tribute to James’ dedication, intelligence and commitment to the CHS and community service. Deadline is April 30th, 2022.

General Information and Applications

CHS-MC AGM Save the Date!

CHS-MC Volunteer Award Nominations for 2021

As a grassroots organization, none of our programs and services would be possible without the time, energy and talents of our volunteers. Volunteer contributions are vital to the work of the Chapter and those contributions are both recognized and valued. CHS-MC is committed to the ongoing development of volunteer policies and procedures to encourage good practices.

Please help us recognize the work of Chapter volunteers by nominating someone who made a difference to you in 2021. The online form describes the award and lists the previous recipients.

2021 Chapter Awards Nomination Form

All About Mild Hemophilia, New Edition

Mild hemophilia can be very serious and even life-threatening if injuries or bleeds are not treated promptly and adequately. The past few years, a lot of new details on this condition were published, hence the need to revisit the 2007 CHS publication. bit.ly/AllAboutMildHemophilia

Gala Early Bird Draw

Don't miss out on the early bird draw! Order your tickets at http://ow.ly/GXHO50HKlMe

Family Camp 2022 1st Announcement

Luther Village July 10th to 15th

The Chapter is so excited to announce that after a two year pause, the Family Camp is back for 2022! Online registration will open on Monday April 4th. Spots will be filled on a first come, first served basis. The CHS-MC Family Camp program is open to children under 17 years of age with a bleeding disorder and their immediate family members.

There are some temporary changes for the 2022 season. Luther Village is rebuilding the dining hall and will not be providing meals for the 2022 season. Families will be making the own meals. The Chapter is looking to have two of the meals catered and will provide families with a meal allowance. The second change is that Beaver Lodge is not available to campers this summer. We have rented alternate cabins for CHS-MC families.

What hasn't changed? CHS families will enjoy the beach and programming offered by the folks at Luther Village and education provided by Rose Jacobson, RN and Matthew Thiessen, PT! It's been too long since we have been together. In December of 2021 Family Camp families reviewed and revised the Goals of CHS-MC Family Camp. Is 2022 the year your family comes to camp?

2022 World Congress of Hemophilia in Montreal

The WFH Congress 2022 will bring together pioneers and leaders in the fields of gene therapy, stem cell transplants, bleeding disorders, hematology and much more! Join the community for medical and scientific sessions delving deeper into these topics – e-program now available: http://ow.ly/hLzL50Hxouv

Order your tickets at http://ow.ly/GXHO50HKlMe

Thank You 2022 Gala Course Sponsors!