Muscular Dystrophy Canada provides support to individuals and their families affected by neuromuscular disorders that enhance quality of life – this may include going to a Taylor Swift concert!
In 2011, the Board of Directors for Muscular Dystrophy Canada asked the staff to propose a number of priority focus areas for the organization. One of the issues presented was the promotion of best practices in respiratory care among individuals living with neuromuscular disorders. The Board supported the importance of this initiative, and agreed to assess the issues and determine the role that Muscular Dystrophy Canada will play in the coming years on the topic.
The first initiative was to create the Respiratory Care Guide so that our stakeholders and the public could become better educated on the subject, and to bring awareness of its importance. During the research process, we found that it was the upmost importance to a client’s overall health for them to be able to clear their airways.
Content experts have informed Muscular Dystrophy Canada that the use of Cough Assist machines is a preventative strategy for those with neuromuscular disorders. While the use of Cough Assist machines have been identified as capable of preventing acute infections access to this equipment is an issue due to limitations in funding resources. Cough Assists are expensive costing approx. $5000. In Ontario, there is no government funding available for this device.
Some people need to use a Cough Assist throughout the day to prevent complications so that their breathing is not compromised, Hayden is one of these individuals. We received a call from the MacIntyre family who had an opportunity to enjoy a Taylor Swift concert, but the only way the family could attend the concert was to have a battery powered Cough Assist machine available to them. Muscular Dystrophy Canada’s services department worked with the family to secure a battery Cough Assist from provided funding through Muscular Dystrophy Canada’s equipment program. The MacIntyres were thrilled, “We are now the proud owners of a new battery-backup cough assist. We cannot thank you enough for all that you did to make this happen so quickly. We cannot thank Muscular Dystrophy Canada enough for always supporting us as a family. Please accept our warmest thanks in the short term for flexing your muscle for those who can’t! We had a wonderful time at the concert.”