March 2023
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In this issue ...

WGBD Committee Update, CHS-MC Family Camp, Annual General Meeting, WFH eLearning, Thank You, World Hemophilia Day, Run 4 Your Cause

WGBD Committee Update
By Milena Pirnat, Chair WGBD Committee
Public Health Project

We have exciting news and updates from the Women and Girls with Bleeding Disorders (WGBD) Committee. WGBD Committee is inspired by our achievements in 2022 and we continue to work on many important projects that involve WGBD.

In 2022, we embarked on a special project to raise awareness about women with bleeding disorders. This is a comprehensive project that includes education for clinicians, high school teachers and medical educators about bleeding disorder issues affecting Manitoba women and girls. On the Chapter website you can find Resources for Clinicians that includes an order form. These resources have been sent to many health care facilities in Manitoba but showing your family doctor where to access them is a HUGE help!

The project is yielding some exciting results. We are pleased to share that the Women’s Clinic ordered these materials for all five of their locations to raise awareness with their patients and their health care workers! We are currently connecting with ACCESS Fort Garry to promote the awareness materials.

Sandra Penner made a presentation to midwives and had a public display at the South Central Women’s Health Expo earlier this month in Morden. At this event created by Genesis House, Sandra made connections with public health nurses who have asked for an informal education session. She met with many women and gave out our materials. Thank you so, so much Sandra!

Our collaboration with our friends at Hemophilia Ontario continues. Together we offered suggestions to refine the Self-Bat test created by Dr. Paula James. The Self-Bat is one tool sent out in our information packages to primary health offices. We hope by encouraging its use, it will expedite the diagnosis of women and girls with bleeding disorders.

Do you know someone who would benefit from taking the Self-Bat? The Self-BAT (self-administered bleeding assessment tool) is a scientifically validated scoring tool developed by Dr. Paula James targeted at individuals who are concerned about bleeding. Taking this test will help you better understand whether current, or previous, bleeding episodes are normal or abnormal.

We have been working to connect the Manitoba Bleeding Disorders Program with the department of Family Medicine at the University of Manitoba. Our goal is to improve education for primary physicians regarding WGBD.

CHS-MC Family Camp is for ALL Bleeding Disorders

Chapter Family Campers want to encourage other member families to find out what the CHS-MC Family Camp is all about. It is a wonderful program that the current attendees value and enjoy. We invite you to contact the office and ask about camp and what to expect from a camp experience. Please have a look at: Goals-of-CHS-MC-Family-Camp 2023

2023 CHS-MC Family Camp will be held from July 16th to the 22nd at Luther Village, near Kenora Ontario. Located on the beautiful shores of Dogtooth Lake, Luther Village has much to offer including programming for children, comfortable accommodations, and activities for the whole family, hiking trails, boating, and more. Luther Village has an excellent web site: www.luthervillage.ca

CHS-MC will financially sponsor Chapter families who meet the following criteria:

Children 17 years of age and under with an inherited bleeding disorder
Their siblings aged 17 years of age and under
Their parents or guardians – 2 adults In the circumstance where one parent or guardian cannot attend, one alternate adult may attend in their place

All members who meet the eligibility criteria will pay a registration fee of $50 per person attending. These Chapter members will be registered on a first come, first served basis starting Monday, April 10th. Online Registration

Reservations will only be held if registration fees are paid by the deadline of May 31st.

Please visit Family Camp on the Chapter website for photos, 2023 Camp theme and more!

Annual General Meeting

Join us in person at the St. James Library for the CHS-MC Annual General Meeting (AGM). The second-floor program room is accessible by elevator.
The Chapter is required to hold a meeting, once a year, to report our activities to the membership and public. It is an opportunity for registered members to receive the 2022 Financial Statement. Members over 18 will vote on the 2023 Budget, elect board directors, and all are welcome to ask questions or voice concerns. We will celebrate the accomplishments of the Chapter as the board President, the office staff and various committees will give reports.
The AGM is an excellent opportunity to connect with Chapter members. Please REGISTER. We want to have enough refreshments. It will be great to see you!

WGBD on the WFH eLearning Platform

Did you miss International Women’s Day, and want to learn more about how bleeding disorders impact women and girls with bleeding disorders (WGBDs)? Check out our various resources on the eLearning Platform to find out more:

Updated Women and girls with hemophilia handbook
International Women’s Day Webinar (held on March 8, 2023)
Barriers to Accessing Care for Women and Girls with Bleeding Disorders webinar (held on September 22, 2022)
Frequently Asked Questions on Women and Girls with Bleeding Disorders

And more!

The WGBD Committee would like to thank the Chapter women who offered to connect with a newly diagnosed member. It meant the world to our new member and it made us so proud of our community!

We are so pleased to announce that the Esplanade Riel Bridge and WINNIPEG sign at the Forks will be lit up red in celebration of World Hemophilia Day.

On April 17, 2023, the World Federation of Hemophilia (WFH) is asking landmarks all over the world to Light it Up Red! in the name of World Hemophilia Day. Lighting up a building or landmark in red will help bring attention to those affected by inherited bleeding disorders.

The theme of World Hemophilia Day this year is “Access for All: Prevention of bleeds as the global standard of care “. By raising awareness and bringing hemophilia and other inherited bleeding disorders to the attention of policymakers, we can increase sustainable and equitable access to care and treatment.

Light It Up Red is a campaign championed by the WFH, an international not-for-profit organization and global network of patient organizations in 147 countries. The WFH has been providing global leadership to help improve and sustain care for people with inherited bleeding disorders—including hemophilia, von Willebrand disease (VWD), rare factor deficiencies, and inherited platelet disorders—for nearly 60 years.

The international bleeding disorders community has seen amazing participation over the past few years for the Light it Up Red! initiative. In 2022, over 125 major landmarks around the world participated—a record!

We are planning a gathering at the Forks for the early evening of the 17th. We would like to have group photos taken with the two landmarks. Please watch the Chapter website, Facebook, Twitter and Instagram for details.

Run 4 Your Cause

We are SO EXCITED to be part of the Run 4 Your Cause! The running community is a great group to be involved with. You don't have to run to participate. You are welcome to walk the 3.3K and strollers are welcome! Go to the link to explore all the options. We are happy to be part of this healthy living event!

We're back! With our first live event in quite some time, we can't wait to see you Run 4 Your Cause on Saturday, June 10th, at CMU North Campus.

Walk or run 3.3K, or give your best guess at predicting a 5K finish time - the finisher with the closest prediction time wins! No gender categories, no age categories...but also no devices. How well can you pace yourself, old-school-style?
We are thrilled to be part of the @manitobarunnersassociation 5K Classic Series, and the Youth Series for both distances.
If you'd still like to Run 4 Your Cause but can't join us on race day we continue to offer a virtual option.
Come on out and support one of four great community organizations: every registration includes a donation, and help them out even more by raising funds in support of their work. Or, register for free and get busy fundraising!

Register Today

CHS-MC Family Camp Program

Thank You to our Women & Girls Newsletter Sponsors