Social Action

Muscular Dystrophy Canada engages in social action to ensure that people with neuromuscular disorders can participate fully in all aspects of daily living. We aim to do this by working with other organizations to bring about policy changes at the provincial and federal level, and by providing volunteers in community chapter offices with tools they need to participate in local advocacy efforts.

Muscular Dystrophy Canada is a founding member of Neurological Health Charities Canada (NHCC). By bringing together stakeholders groups which share common experiences and common links with one another, NHCC is able to provide leadership in evaluating and advancing new opportunities for collaboration related to neurological disorders specific to advocacy, education and research projects. The first and most pressing issue that the NHCC tackled was the lack of data and information about neurological conditions in Canada.

In June 2009, the Government of Canada acknowledged this need for information and announced $15 million dollars to fund a four-year National Population Health Study of Neurological Conditions (NPHSNC). Now underway, the results of this Study will significantly improve our understanding of the current and projected impact of neurological and neuromuscular conditions in Canada, along with best practices in health care and support services to improve the quality of life. As part of the Study, several projects will seek input from stakeholders, including people with neuromuscular disorders, caregivers, health care professionals and service providers. If you are interested in participating, you can register and your information will be shared with the appropriate research teams.

The NHCC has also identified seven priority issues facing people with neurological conditions and their families.  It is the NHCC’s hope that these priorities will frame a “National Brain Strategy” whereby government, industry and the non-profit sector work together to advance innovative solutions for the following areas.  (Note: For communications purposes, the term “brain” was chosen over “neurological”, because people can quickly relate to the term “brain” and its importance to human life, whereas the word “neurological” is less easily understood by the general public.  Therefore, “brain” will often be used in communications from the NHCC to represent the larger category of the nervous system, which includes the brain, spinal cord, and peripheral nerves.)

1. Research – accelerated and targeted investment in neuroscience;
2. Prevention – knowing more about onset and progression;
3. Integrated care and support services – delivering best practice, coordinated care;
4. Caregiver support – offering meaningful support for the valuable role played by informal caregivers;
5. Income security – protecting people with neurological conditions from poverty;
6. Genetic fairness – eliminating discrimination based on inherited and/or genetic conditions;
7. Public education and awareness – educating people about brain health and reducing the stigma of brain conditions.