A Word from the CEO
February 24, 2014
By Bev Heim-Myers
Last week was a rewarding week with an opportunity to continue to increase awareness with regards to genetic discrimination in Canada. I was invited to present to the Provincial Human Rights Commissioners from all across Canada. They were positive and engaged, and they committed to increase their understanding of Canada being the only G8 country that does not protect genetic information. I also had the opportunity to address rounds at London Health Sciences. Genetic counsellors and geneticists gathered to better understand genetic discrimination and the insurance industry’s decision making processes. A representative from the insurance industry also joined us. I will stay optimistic that the insurance industry in Canada will be onside soon and support ending genetic discrimination for all Canadians, just like they did in the US.
As I write this I am on my way to the CHDI Therapeutics Conference. I look forward to seeing and hearing global HD researchers join to share their successes and help others learn from research outcomes. As in previous years, HDBuzz will be there to share the science and the new discoveries that have promise. Watch for the HDBuzz postings. I will also send some brief updates that the team will send out through social media.
I have to get there first and the trip has had its challenges. Starting in Toronto, the walk to gate 98 was long, and walking to the plane down an icing ramp and across the icy, snow-covered tarmac was a treacherous experience. Once we were boarded and ready to leave, a very loud voice was heard throughout the plane, “You can’t leave without my friend and her son. All she wants is to get home to Chicago and we have travelled together the whole way. Someone gave her the wrong information!” Piecing it all together, there was a 12-game hockey tournament in Quebec that these folks had participated in and they were now tired and just wanting to get home. Evidently this mom and her son were given wrong information and were about to miss the plane. If not for the tenacity, commitment and fearless approach of her friend the flight would have been long gone. More than 20 people on the plane had connecting flights in Chicago, including me, which they were at risk of missing. Just as panic started to set in for the rest of us we see mom and son negotiating the slippery walk to the plane. All’s well that ends well. This mom and son made it home to Chicago and I made the connecting flight.
Advocates don’t look the same but they do act the same. They are passionate, committed, focused and brave. They do not stop at no. Everyone needs an advocate at some point in their lives. I hope mine is results focused just like the hockey mom on the plane.