CAN-NMD ANNUAL MEETING UPDATE
On September 23 & 24, 2015 the 2nd annual CAN-NMD meeting was held in Canada’s Capital City of Ottawa.
Dr. Lawrence Korngut, Chair of the Network, kicked off Day 1 with opening remarks followed by a series of mini-talk presentations from many of our members, both old and new, providing research and clinical care updates from across the country in neuromuscular diseases.
The talks provided great insight into what our attending members have been working on in their field. Duchenne muscular dystrophy, Charcot-Marie Tooth disease, amyotrophic Lateral sclerosis (ALS or Lou Gehrig’s disease), familial amyloid polyneuropathy, and spinal muscular atrophy were all represented in the research updates including new diagnostic tools and potential new treatments. Clinical care was also well represented with talks on knowledge sharing, enhancing care, supporting youth in clinics, new training programs and multidisciplinary approaches to rare disease diagnosis and treatment.
A sneak peek of the upcoming Neuromuscular Nation virtual social community was presented and excited attendees were invited to test the site. Neuromuscular Nation aims to be a secure place where patients and families who may never otherwise have a chance to interact with each other can connect, share, and gather information.
Day 1 ended with the inaugural edition of National Neuromuscular Disease Rounds as a multidisciplinary team from Moncton, New Brunswick presented exceptional cases encountered recently. They highlighted a multidisciplinary approach of research, diagnostic, and clinical care teams working closely together which allowed them to diagnose and treat these cases with greater success. The Moncton team aims to improve diagnosis and treatment though the integration of Next Generation Sequencing (NGS) and development of biomarkers using mRNA and NGS. They are also conducting systematic studies on familial ALS and MS (Multiple Sclerosis) in communities where a “rare” disease occurs more “frequently” in order to better understand, diagnose and educate those communities. Video of the NMD Rounds will be available soon.
The morning of Day 2 focused on knowledge translation as the CAN-NMD’s national knowledge broker, Gracia Mabaya (based at the London Health Sciences Centre in London, Ontario) presented the Network’s knowledge translation framework. This framework will be used to advance knowledge sharing and exchange in neuromuscular research, clinical care and education across stakeholder groups represented within the Network, as well as between Canadian clinical care facilities to improve overall care, and facilitate more rapid uptake of new findings from research across all centers. Examples of how the framework could be applied were provided and there was a general consensus among members on the comprehensiveness, applicability and usefulness of the framework for future Network-specific knowledge sharing and exchange initiatives.
Representatives from 5 companies in the pharmaceutical industry were also in attendance on Day 2 and participated in a round table discussion sharing ideas around forging mutually beneficial outcomes in neuromuscular disease research and clinical care.
Meeting attendees spent the afternoon within their respective task force to review progress on activities undertaken in 2015 and looked ahead to plan the work to be accomplished in 2016. Each task force presented its yearly plan to the rest of the network before a representative from Muscular Dystrophy Canada joined Dr. Korngut for closing remarks on a successful meeting. The dates for next year’s annual meeting will be finalized in the next couple of months. Watch your inbox for an opportunity to provide input on the best timing.
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.