President Alex Forrest, Secretary Rob Labossiere and Executive Board Member Chad Swayze attended the Muscular Dystrophy Canada Prairies Fire Fighter and Chapter Conference 2014 that was held in Edmonton.

The theme of the conference was “Passion and Progress”.  For 60 years Fire Fighters have been partnering with MD, raising funds and awareness for Muscular Dystrophy and at these conferences Firefighters, Chapters (family members and clients) researchers and staff members get together to discuss where our fundraising goes, to hear reports of researchers and staff, to share ideas on successes and the challenges of fundraising, to hear about the impact on families and to reenergizing our partnership.

Day one involved the business part of the conference as we reviewed budgets, heard reports from advisors and staff and national updates from CEO Catherine Sherrard.

Day two started with a research update from Dr. Lawrence Korngut. There are over a 140 identified type of Muscular Dystrophy and there have been “explosive” advances in the research, including successful interventions improving the quality and quantity of life for clients to the point where 20 % of people with Muscular Dystrophy are now over the age of 18.  Dr. Korngut recently attended a Canadian Neuromuscular Network conference with a nationwide collaboration of researchers, clinicians and allied healthcare professionals aiming at improving the lives of those affected by neuromuscular conditions through improving clinical care, research capacity and education. By sharing all this information and research we can only get closer to finding a cure.

Dr. Janice Richman, a Pulmonary Rehabilitation Medicine and Palliative Respiratory Care specialist  spoke on the “Guide to Respiratory Care for Neuromuscular Disorders” funded by the Muscular Dystrophy Association.  Neuromuscular disorders cause progressive muscle weakness, which can impact the muscles used in breathing and coughing. Weak respiratory muscles can put you at risk for respiratory failure, which is a common cause of death in people with neuromuscular disorders. Thanks to advances in clinical care and research there are things that can be done to manage the respiratory effects of neuromuscular disorders.  Dr. Richman reported on how simple breathing techniques improved and even prevented medical interventions including the need for a tachometry. This guide has been readily available because of the benefits that also apply to other illnesses.

“Sharing our story”.  Kathy, mother of Thomas who recently passed, shared the story of raising and living with someone with muscular dystrophy. These are always emotional roller coasters. Thomas lived a short but full life and the impact he made on family and friends and the challenges he faced only made him fight harder to achieve his goals in education by attending Carlton University.
The evening banquet included Achievement and Local recognition awards and President Forrest accepted the Department of the year award on behalf of Local 867.  Brother Al Bartley received the Courage to Inspire Awardfor his involvement with the Chapters, raising funds and awareness for Muscular Dystrophy for 50 years.

On behalf of President Forrest, Chad Swayze and I, thank you for your support.

 

Rob Labossiere

Secretary, UFFW