We are pleased to share some good news from the Society and provide you with an update on our recent activities.
Research
This year, we were very fortunate to be in the unique position to fund all of the fundable research projects that were submitted through HSC’s NAVIGATOR and NEW PATHWAYS granting programs. This was made possible because of our very generous donors and their commitment to research.
We will be funding some new and exciting research this year and a project that is a continuation of the work we have funded previously.
In 2013 we funded Dr. Jeff Carroll through a 2013 NEW PATHWAYS grant. This grant allowed Dr. Carroll to explore HD’s effects on metabolism in liver cells. Based on the results of that work, he is now collaborating with CHDI (a significant HD research funder from the United States) to take this research even further.
“Without the support of HSC at this critical juncture, there is no question that this project would have died on the vine. HSC’s grant programs fill a critical gap in the field.”
Dr. Jeff Carroll
The Huntington Society of Canada continues to fund excellent evidence based research, thanks to the generosity of our donors. We are proud of the accomplishments that have been made to date and are looking forward to sharing the outcomes.
Services
As the Huntington Society evolves and continues to grow, so does the Family Services program. Through a careful reallocation of savings and a small additional investment of donor dollars, it is with great pleasure that we announce the expansion of services in southwestern Ontario. The new HD Resource Centre will be located in London, Ontario and led by Corey Janke. Corey has been a Family Services Worker for HSC for over 20 years and has been named the new Resource Centre Director for this area, supporting individuals, families and the community.
With the retirement of Sally Vincent in northern Alberta, we are pleased to announce that Bernadette Modrovsky, will be joining the Family Services Team in late August. Bernadette, a Social Worker, brings a wealth of experience from a medical social work background and is excited to be moving to a community-based service opportunity.
In addition to Sally’s retirement, Karl Lottes announced his retirement from the Resource Centre in southern Alberta. Karl will retire from the HD Resource Centre in the fall and will help to train the new social worker for the area. We are thrilled with the significant advance notice so that we can ensure seamless transition for this community.
Genetic Discrimination
We are thrilled to announce that on July 10, 2014, the Office of the Privacy Commissioner of Canada (OPC) released a statement denouncing the use of genetic test results by life and health insurance companies. At this point in time they do not feel the use of genetic test results is demonstrably necessary for the insurance industry to achieve their objectives.
HSC has been leading the charge, supported by the Canadian Coalition for Genetic Fairness (CCGF), to end genetic discrimination in Canada. We applaud the Office of the Privacy Commissioner of Canada for identifying this as a problem, and for showing the leadership required to end this practice in Canada.
The hope is to have protection in place by this fall and the statement from the Office of the Privacy Commissioner of Canada will help inform the direction that the Federal Government may want to take.
Youth Mentorship Program
With the first several mentor-mentee matches made, it is full steam ahead for HSC’s youth mentorship program. Early feedback has been very positive:
“I have a very open relationship with my child but I will never fully understand what my child is going through and their feelings.”
“I am relieved my child can share their feelings with someone who truly understands. I feel so much better knowing my child has someone comfortable to talk to. I highly recommend parents look into this program.”
Like any new initiative, growing the mentorship program will take time, but with the building blocks in place, this program is one to watch.
We continue to tell a powerful story; a story of a community of caring people who pull together and change the reality for families living with Huntington disease. With your support we have good reason to be optimistic.