CHS-MC Chapter Update March 7, 2019

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In this Issue:

Thank you Gala Committee, CHS Rendez-vous 2019 - Youth, vWD Survey, HemACTIVE Study, CHS Rendez-vous Community Engagement Workshop, CHS Communication Survey, Award Video

Thank you 2019 Gala Committee!

There is a very dedicated group of CHS-MC volunteers who work for 5 months to deliver the Chapter’s most significant fundraiser, the Annual Gala Dinner. Thank you to Gala 2019 Chair Katherine Cameron, Bev Jones, Bruce Cameron, Cory Prestayko, Crystal Dueck, Dana Beljanic, Danielle Figler, Janet Bishop, Jason Oltrop, Lynda Regan, Shane Keilback, Silvana Moran and ex officio John Rogasky. Once we have the all the photos from the Gala we will acknowledge all the amazing volunteers who helped us the night of! In the meantime, we have posted Bill Featherstone’s photos on our Facebook page @HemophiliaMB.

CHS Rendez-Vous 2019 Youth Opportunity

Attending this meeting is a fantastic opportunity, in just a few days, to gain new knowledge and to network with peers and friends from across Canada. All successful applicants will have their travel and accommodation covered by CHS.

The deadline to apply is March 21^st. You can contact the Chapter office for an application form at 204.775.8625 or email info@hemophiliamb.ca. Don’t miss out!

HealthPulse Survey - von Willebrand disease

Do you have type 2 or 3 von Willebrand disease? You may be interested in our online survey.

HealthPulse, a Canadian healthcare consultancy company, is currently looking for patients with von Willebrand disease to participate in an online market research study.

The objective of the study is to gain a better understanding of the needs of von Willebrand disease with the goal of improving and advancing treatment and care.

All individual responses will be combined and no personal information or individual responses will ever be released to anyone including the study sponsors. Your participation will contribute to better health services and products for patients with von Willebrand disease.

At the completion of the study, you will be compensated for your time.

If you are interested in our study, please contact us at info@healthpulse.ca for more information.

HemACTIVE - Hemophilia A Study

HemACTIVE is a global research survey in which Bayer is engaging people living with hemophilia A between the ages of 18-65 years and parents of children ages 2-18 years old living with the disease from North America and Europe. The survey aims to identify how hemophilia A affects the daily lives of persons living with this chronic disease and to better understand the role of treatment. To date, over 300 persons with hemophilia have participated and helped to generate great insights on the impact of hemophilia A on many facets of life, including how they define activity.

Kantar Health, a market research firm specializing in medical research, is currently recruiting people living with hemophilia A to take part in the online survey.

To learn more about the qualifications for the study and to link to the study, please visit Study – Hemophilia A.

CHS Rendez-vous 2019 Community Engagement Workshop

CHS will be sponsoring 10 individuals (one per chapter) to attend the Community Engagement Workshop. This workshop will bring together chapter members to develop and launch an exciting member engagement and fundraising campaign for 2019. The Manitoba Chapter will be accepting applications and invite individuals to apply who meets the following criteria:

-active volunteer of the chapter
-interest in fundraising
-ability to leverage their social networks; and
-willingness to serve as a local champion for the CHS.

Attending this meeting is a fantastic opportunity, in just a few days, to gain new knowledge and to network with peers and friends from across Canada.All successful applicant will have their travel and accommodation covered by the CHS.
The deadline for applications is March 19^th. You can contact the Chapter office for an application form at 204.775.8625 or email info@hemophiliamb.ca. Don’t miss out!

CHS Communication Survey

The CHS is conducting a communication audit to examine the many ways we communicate with our members, in order to identify gaps or changes that are necessary. Communication is important and we want to make sure we’re reaching you in the best and most concise way as possible. https://www.surveymonkey.com/r/CHSComm2019

Ashley Tolton CHS-MC 2018 Special Recognition Award Winner

Click on photo to start video

Ashley Tolton CHS-MC Award Winner
Special Recognition Award

Awarded to: A Chapter member or a member of the Bleeding Disorders Care Team who has made a significant contribution to the Chapter within the past year or over a number of years

Ashley Tolton was the driving force behind creating the Chapter’s volunteer program. She worked with a dedicated committee to develop recruitment tools, refine our recognition program and quantify the efforts of our volunteers. Ashley is a wonderful volunteer herself, and began her work with the Chapter volunteering on the Puma Road Running Committee.
Ashley served on the Chapter’s Board of Directors for 11 years. She served as a Director and as a member of the Executive. The CHS-MC Board and Members congratulate Ashley on her award and express our gratitude to her for her valuable contributions to the community.

Dates to Watch!

April 10th - Deadline for Board Nomination Forms
April 13-14th - Advocacy Workshop
April 17th - Deadline for Proxy forms
April 24th - Annual General Meeting
April 30th - Deadline for CHS applications for scholarships and bursaries
June 21-23rd - Tentative date for Guys Camping Trip
July 14- 20th - Tentative date for Family Camp