About the Blog
Neuromuscular Now is the Canadian Neuromuscular Diseases Network (CAN-NMD) blog, intended to share the work of the Network broadly throughout Canada and beyond. We aim to provide new content twice per month including updates from the Network, as well as featured posts on noteworthy topics spanning the neuromuscular disease field from guest bloggers and Canada’s researchers and neuromuscular care providers. If you have a great idea for a topic you’d like to see please let us know!
Join the Network
Since its inaugural meeting in the picturesque town of Banff, Alberta, in October 2014, the Network has begun setting out its mandate and vision. During the first three years the Network aims to become a sustainable national entity consisting of all interested stakeholders across neuromuscular disease and contributing to the delivery of world class clinical care; the enhancement of capacity for world-class clinical and basic science research; and the creation of world-class educational opportunities in neuromuscular diseases.
The CAN-NMD welcomes academic, as well as community memberships. To become a member, please see the types of memberships offered by clicking here and click on the “BECOME A MEMBER” button below the page to register.
A glance at Network Activities!
Over the past year, the Network has been working to obtain an understanding of stakeholder needs through needs assessment and environmental scan surveys. You can provide your input here. The results collected from these surveys will enable the Network national staff to identify existing gaps and assets with respect to the national neuromuscular clinical care landscape, knowledge translation and research talent engagement.
The Network is preparing to launch a virtual social community “Neuromuscular Nation”, which will be a great collaborative platform uniting patients, families, and caregivers, from across Canada and facilitating new relationships and sharing of experiences. Specific features of the portal will include a personal profile, live chat, secure mailbox, knowledge repository and research notifications from the Canadian Neuromuscular Disease Registry (CNDR)… and many more! Stay tuned for more information on the launch of the Neuromuscular Nation.
To date, the CAN-NMD has been presented at various conferences, namely the “Colloque interdisciplinaire sur les maladies neuromusculaires et la sclérose laterale amyotrophique” in Laval, QC on April 16th, 2015; at the rehabilitation clinic network (IRDPQ) in Quebec City on May 15th, and at the International Myotonic Dystrophy Consortium (IDMC) in Paris, France on June 9, 2015. On September 20, 2015, CAN-NMD will be showcased at the Muscle Study Group Society Scientific Meeting in Snowbird, Utah.
The Network has also begun work on tools for scientists and clinicians working in translational research; a knowledge translation framework and an education framework.
Upcoming Annual Meeting
The Network will hold its annual meeting in the heart of the nation’s capital, at the Westin Ottawa Convention Centre from September 23-24, 2015. Look for updates from that meeting on our next blog post.
Whether you are a neuromuscular disease patient, a parent or caregiver, a health care provider, a researcher, a student or simply one who is passionate about neuromuscular diseases, your feedback is highly important to us! We look forward to receiving your comments in the area below, or here.