A Word From our CEO
May 14, 2014
It has been a couple of busy weeks at the Society, and this is the first new blog in that time. On May 3, the Huntington Society of Canada’s Board met for their spring board meeting. This is the meeting where we discuss projected year end results and where the board reviews and approves the budget for next year. We also discuss the year’s activities, outcomes and results as they relate to our Strategic Plan. It has been a good year that has seen many accomplishments:
- The implementation of a new HSC website
- Exciting outcomes of the research that we fund
- Increased support to families across Canada
- Implementation of our Youth Mentorship Program
- Improved efficiencies within all of our departments
- On budget projected results
- Getting many steps closer to making genetic fairness a reality in Canada.
Last week, I was in Ottawa for several meetings, including those with Senator Frum’s office and with Senator Cowan’s office, to discuss the next steps regarding Bill S201. This genetic non-discrimination bill, presented by Senator Cowan, has made it past second reading and will soon be going to hearings. After the second reading of Bill S201, Senator Frum had some concerns that were articulated in her speech, before the bill was referred to the Standing Committee of Legal and Constitutional Affairs. Senator Frum agreed with the concept of genetic fairness and the intent of the bill. I felt it was a good opportunity to address any concerns that were expressed by Senator Frum and her team.
While in Ottawa, I also met with Rx&D, Canada’s Research-Based Pharmaceutical Companies. We have been fortunate to receive funding from Rx&D to move forward with our initiative to build a strong HD clinical trials network in Canada. This is an exciting first step to ensure when HD treatments are ready for clinical trials we are ready to participate in those trials, in Canada. Rx&D is on board with us and are, as they stated, “Looking forward to participating in this leading edge initiative.”
The HSC team has achieved a lot over this past year. When I say team I also include you, our supporters and stakeholders. Together we are making the difference, thank you.
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