Brian Parsons, ALS Advocate
Brian was diagnosed with ALS on March 27, 2013 and within the first six months came to work with ALS Canada on national advocacy efforts, as a spokesperson, an incredible fundraiser and a volunteer.
We met Brian for the first time at Parliament Hill for Hill Day November 19, 2013. Our team included Brian, Dr. Christen Shoesmith and Dr. Christine Vande Velde. Brian not only brought the clarity of the voice of a person living with ALS, but also the depth of experience, integral knowledge of the system and the personal relationships from having worked on Parliament Hill in the 1980’s.
Over the next year Brian has selflessly given his valuable time to attend many meetings with politicians, bureaucrats and staffers in Ottawa. He has been incredibly persuasive in meetings with Annette Ryan, Director General of Employment and Social Development Canada and with Sean Speer, Special Advisor to the Prime Minister’s Office. He has travelled to Toronto to review our position with the Minister of Finance, Joe Oliver and used all of his salesmanship and expertise to connect to these government officials. Brian has been relentless in his pursuit of a meeting with Minister Kenney and Minister Poilievre as we worked together to secure the necessary changes to CCB eligibility.
Brian’s message has had a profound emotional impact on the people we have met on Parliament Hill. He delivers difficult messages that continue to resonate long after we have left the room.
Brian has been the face of the CCB campaign. He has sought out and secured many interviews and formed relationships with the reporters in most of the major media outlets. They have followed our cause and our requests because they care about Brian.
The passion and dedication that Brian has had for change to the CCB has had him leading from the front and pushing from behind. He has continuously reminded everyone involved of the immense need and the urgency to secure this change. He has shared his connections, relationships and strategies on how to influence the government to move forward to better support Canadians living with ALS in the moment of greatest need.
We believe that without Brian’s involvement and invaluable contributions, we would not have been able to secure many of the meetings we had or establish the lasting relationships we now have in government. Without Brian, we do not believe we would have been as influential as we were in having the Compassionate Care Benefit extended from six to 26 weeks.
We have been privileged to work with Brian. We have learned much and been inspired as he reminds us often; the greatest pursuit in life is to elevate the human condition. He has done that for so many.
ALS Canada honoured Brian and awarded him with the Brett Yerex Exceptional Advocacy Award. Brett, Yerex was an exceptional advocate in seeking to improve the quality of life for Canadians living with ALS.
On May 3rd, ALS Canada recognized and honoured members of the ALS Community through ALS Canada's annual Volunteer Awards Ceremony. Read their stories here.
Thank you to all volunteers for their dedication and commitment to helping clients and families living with ALS and fund world-renowned research.
On May 4th, 2013 ALS Canada hosted it's annual Volunteer Awards ceremony at the Sheraton Gateway Hotel in Toronto.
Congratulations to this year's volunteer award winners. Click here to view the award winners.