Thank you for taking the time to complete this survey. Your input is very helpful to Muscular Dystrophy Canada’s planning.

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* 1. In what region does your involvement with Muscular Dystrophy Canada primarily take place?

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* 2. Which of the following describes your association to Muscular Dystrophy Canada? (Please check all that apply)

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* 3. How old are you?

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* 4. How old is your family member with a neuromuscular disorder?

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* 5. How old are the people with neuromuscular disorders you work with? (Check all that apply)

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* 6. How aware are you that Muscular Dystrophy Canada provides the following initiatives or services?

  Not at all A little Somewhat A lot
Information about neuromuscular disorders and managing neuromuscular disorders
Information on clinical trials and clinical research opportunities
Financial assistance (e.g. equipment program)
Education sessions
Assistance in advocating for access to resources or supports
Assistance in navigating available supports
Funding to scientific research related to neuromuscular disorders (search for a cure)
Funding to quality of life research related to neuromuscular disorders (for example, improvements to health services, developing new technology for assistive devices, etc.)
Information about progress on research and related issues
Advocacy on issues relating to neuromuscular disorders

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* 7. To what extent has Muscular Dystrophy Canada met your (or your family member, or clients) expectations?

  Not applicable to me Muscular Dystrophy Canda has not met my expectations Muscular Dystrophy Canda has met my expectations Muscular Dystrophy Canda has exceeded my expectations
Provide information on managing a neuromuscular disorder (respiratory health, nutrition, exercise, working within the healthcare system)
Providing funding to quality of life research related to neuromuscular disorders (for example, improvements to health services, developing new technology for assistive devices, etc.)
Provide assistance in navigating available supports
Advocating on issues relating to neuromuscular disorders
Provide information about a neuromuscular disorder (diagnosis, symptoms)
Providing funding to scientific research related to neuromuscular disorders (search for a cure)
Providing information about progress on research and related issues
Provide education session(s)
Provide financial assistance
Provide information on clinical trials and clinical research opportunities
Support networking and shared learning with other individuals and families affected by a neuromuscular disorder (Chapters, Community Networks, Support Groups)
Provide assistance in advocating for access to resources or supports

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* 8. How important is it to you that Muscular Dystrophy Canada dedicate resources to the following? Please rank the following initiatives or services in order of importance (1=most important, 2=2nd most important, etc.)

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* 9. In the future, how interested are you to engage with Muscular Dystrophy Canada in the following activities.

  Not interested at all Minimally interested Moderately interested Very interested
Assist in the delivery of education programs
Contribute to the annual campaign
Engage in advocacy on issues related to neuromuscular disorders
Network with other individuals or families affected by a neuromuscular disorder
Participate in your local chapter or community network
Assist in administrative tasks (e.g. helping with mailing)
Register as a client
Get involved in fund raising events
Assist in raising awareness about neuromuscular disorders and Muscular Dystrophy Canada

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* 10. Which of the following do you use to get information on Muscular Dystrophy Canada and/or neuromuscular disorders?

  Not at all A little A lot
Local Chapter or Community Network
Meeting or communicating with with Muscular Dystrophy Canada Staff
Social Media
Newsletters
My Local Clinic
Website
Meeting or communicating with with Muscular Dystrophy Canada Volunteers

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* 11. How can Muscular Dystrophy Canada better engage with people affected by neuromuscular disorders?

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* 12. What are ways that Muscular Dystrophy Canada could strengthen its collaboration with you/your organization?

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* 13. Do you have any other comments or feedback that could assist Muscular Dystrophy Canada in better supporting people with neuromuscular disorders?

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