CHS-MC Chapter Update February 5, 2020

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In this Issue:

Early Bird Draw Winners!, Inhibitor Workshop, CHS Board Elections, Silverberg Foundation, Revised Standards of Care, Parking at HSC, 38 days to Gala Dinner, Support Ticket, News Bytes

2020 Gala Early Bird Winners!

CHS Inhibitor Workshop

The CHS is once again planning to host a national workshop for families with children who are living with inhibitors: new this year, adults with inhibitors are also invited.

It will be held in Toronto the weekend of April 17-19, 2020.

Please return the announcement questionnaire at http://bit.ly/inhibitors2020 by February 10, by e-mail, fax or mail, to request a registration form and to tell us what topics you feel should be covered.

CHS-MC 2020 Board Elections

CHS-MC wants to be representative of all the different types of members that we serve. We currently need representation on the Board of Directors from Chapter families with children in the pediatric program, members with Von Willebrand Disease and women with inherited bleeding disorders. We are always looking for new Board members to keep the organization relevant with new ideas and fresh perspectives.

CHS-MC is a grass-roots, volunteer run organization. We rely on volunteers to sit on the Board of Directors as well as the Chapter’s committees. Have you ever thought to run for a position? If you worry that you don’t have any experience being a Board Director, we provide support and training to develop our Board members. Your commitment is to attend the Board meetings (about five times a year) and we ask Board members to participate on the committee of their choice. The committee you choose may reflect your particular bleeding disorder, interest, or time availability. We offer new Directors some time to learn about all of our working committees and what they do before requiring a choice be made. Please have a look at Board Volunteer Job Descriptions for more information about the different roles. Please call the office or email us if you have any questions.

Nominations & Proxies
Nominations must be into the office by April 4^th. Please download a 2020 Board of Directors Nomination Form and have it sent into the Chapter office by April 4th. If you would like us to mail you a form, please contact the office.

Proxy forms must be into the office by Wednesday, April 17th. Please download a 2020 Proxy Form and have it into the office by April 17th. If you would like us to mail a form to you, please contact the office.

Positions for Election

Silverberg Foundation

The Canadian Hemophilia Society, Manitoba Chapter is very honoured to be in the company of 74 local, national and international health and social charities that receives gifts, in perpetuity, from the Silverberg family. The 8.5 million dollar bequest from the Estate of David Silverberg is the second largest fund managed by the Jewish Foundation of Manitoba.

David Silverberg was born in Winnipeg in 1913 to immigrant parents, Maier and Antzi Silverberg. He graduated from the University of Manitoba in 1934 with a degree in Electrical Engineering. He retired as Chief Engineer of Administrative Services for the Department of Transportation. David and his brothers Ernest and Morris were raised to be charitable and dedicate themselves to community services. Mr. Silverberg considered these values to be his “family legacy”. In that spirit they chose to leave an enduring gift for future generations. Mr. Silverberg was a very active community volunteer and spent thousands of hours volunteering for the House of Ashkenasie Synagogue.

The Chapter is very grateful to the Silverberg family for their enduring gift.

Revised Standards of Care Feedback Needed

The Canadian Inherited Bleeding Disorder Standards Working Group has drafted an updated version of the 2007 Canadian Comprehensive Care Standards for Hemophilia and Other Inherited Bleeding Disorders.

Prior to finalizing the revised standards, the Standards Working Group would like to hear from the Canadian bleeding disorder community. You are invited to carefully read the draft document and provide them with your feedback.

The deadline for completing the survey is February 14, 2020.

CLICK ON THE FOLLOWING LINK to read the new “Canadian Integrated and Comprehensive Care Standards for Inherited Bleeding Disorders.”:
bit.ly/NewStandardsofCare

CLICK ON THE SURVEY LINK in order to provide your feedback on the document:
www.surveymonkey.com/r/CHS-CareStandards\

Chapter Parking Reimbursement Program

Chapter members received notice in the December 2019 Chapter Update that the Manitoba Bleeding Disorders Program members will no longer have parking stickers to hand out to members. We want to remind members that you can remit receipts one at a time or several at a time to the Chapter office for reimbursement. The Chapter will not accept receipts that are more than 12 months old.

The Parking section of the HSC website outlines a number of parking solutions that may be helpful to you. The Parking office is just inside the Sherbrook entrance, past the information desk. There you will find some prepaid options like multi-visit parking cards and if you have an admission, weekly parking passes. Should you purchase one of their many options, please remit the receipt to the office.

Please be reminded that parking reimbursement is for bleeding disorder visits to HSC, only.

Only 38 Days Until The 2020 Gala Dinner!

The CHS-MC 17th Annual Gala Dinner of Culinary Inspirations; The Roaring 2020's is a wonderful way for you to support Manitobans with inherited bleeding disorders. Money raised at this event helps us to provide valued programs and services that meet our mission to; " improve the quality of life for those affected by hemophilia and other inherited bleeding disorders through support, service, research, education and advocacy.” Please consider joining us this year. It’s truly a Win/Win.

Watch our Facebook page @HemophiliaMB for the upcoming contest to win two tickets to the March 14th Gala Dinner! Follow the Gala DInner on Instagram @HMBGala and use the hashtag #HMBGala2020!

Support Tickets

If you are unable to attend the 2020 Gala Dinner but would like to show your support for the Chapter and our important work, please consider making a donation or purchase a Support Ticket through CanadaHelps.

Thank you to all the members who have already purchased support tickets!

Chapter News Bytes

The 2020 Annual General Meeting and Education Day will be held on Saturday, April 18th. Keep an eye out for the location and final program! If you have requests for presentations, please contact the Chapter office!
The dates for Family Camp at Luther Village are July 19th to the 25th. We will notify members of the registration date once all the funding for the program is in place.
Here's a tip for members using a Bayer product and accessing KOKONNECT for home care supplies. Be sure to give KOKONNECT the quantity of each item you need to last you six months. Members have reported that doing this has been helpful!

Dates to Watch!

February 10th - Deadline to return Inhibitor Workshop Questionnaire
February 14th - Deadline for Standards of Care Survey
March 14th - Gala Dinner of Culinary Inspirations; The Roaring 2020s
April 18th - Annual General Meeting & Education Day