September 2024 Newsletter | |
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2025 Neuromuscular Fellowship Funding Competition Opens | |
NMD4C, together with MDC are excited to announce the opening of our 2025 annual funding competition to award postdoctoral fellowships in neuromuscular disease research, and clinical fellowships in neuromuscular medicine and electromyography! The competition provides salary support for early-career scientists to conduct postdoctoral studies in a laboratory focused on research of NMDs, and early-career clinicians to participate in a neuromuscular medicine and electromyography fellowship training program.
Key Dates: • Competition Open: Today, September 3, 2024 • Competition Close: October 15, 2024
Eligibility and selection guidelines are available on the NMD4C website for both the postdoctoral research fellowship and clinical fellowships, along with instructions on how to submit your application.
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Newborn Screening Milestone: 100 Percent of Canada Now Screening Infants for SMA |
With the closing of Spinal muscular atrophy (SMA) Awareness Month in August, we are excited to share that all babies born in Canada can now be tested for SMA, a potentially fatal neuromuscular disorder. This milestone has been achieved through the leadership of Muscular Dystrophy Canada and is the result of a three-year project working with each Canadian province and territory. Read the full press release from MDC to learn more!
| | National Neuromuscular Lecture Series Begins 3rd year of Curriculum | The NMD4C was pleased to launch the third annual National Neuromuscular Lecture Series (NNLS) this past August. The NNLS is a year-long educational curriculum that provides training for clinical fellows enrolled in a Canadian neuromuscular fellowship program. The curriculum provides lectures from national experts in 32 key neuromuscular topics, developed in consultation with the directors of fellowship programs across Canada. Learn more about this year's series! | | | |
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MDC Translational Science and Clinical Research Grants Competition Opens |
MDC's annual Neuromuscular Research Grant Program opens today! This program invests in projects related to the diagnosis, treatment, or clinical care of neuromuscular disorders. These grants are intended to: fill gaps in the existing funding landscape; enable researchers to build new and innovative research; support proof-of-concept, feasibility and pilot studies in preparation for larger-scale, longer-term grants from external sources.
Dates & Deadlines: - Competition Opens: September 3, 2024
- Competition Closes: November 18, 2024
- Notice of Decision: March 2025
| | NMD4C Launch Canadian Neuromuscular Clinical Trial Database | Last month we launched the Canadian Neuromuscular Clinical Trial Database! The database has been designed to meet the needs of Canadian neuromuscular trial community stakeholders, providing reliable details about recruiting and not yet recruiting neuromuscular clinical trials, including clinical trial site locations and contact information. | | | |
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Dr. Cam-Tu Émilie Nguyen Receives Distinction Award from Collège des Medicins du Québec | |
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Congratulations Dr. Cam-Tu Émilie Nguyen, who was one of eight clinicians honoured by the Collège des Medecins du Quebec (CMQ) in their annual Distinction awards! Dr. Nguyen was recognized in the Relève (Rising) category for her creation of the Spinal Muscular Atrophy Treatment Program at the CHU Sainte-Justine, where she and her team have performed over 200 life-changing treatments. Read more about Dr. Nguyen's award on the CMQ website. | | | |
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Research Survey to Establish Research Priorities in Respiratory Care of People with NMDs | |
This research project led by Dr. Reshma Amin aims to identify the most important research questions about the lung health of people with NMDs.
The team is seeking patients, caregivers, and healthcare professionals to contribute to their project through an online survey. Review the research project poster in English or French for more information on how to participate!
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X-linked Myotubular Myopathy Brain MRI Study | |
This research project led by Dr. James Dowling aims to identify and characterize any abnormalities detected on MRI brain imaging in individuals with genetically confirmed X-linked Myotubular Myopathy (XLMTM). The study is conducted by SickKids hospital, along with collaborators from other Canadian sites supported through data collection via the Myotubular and Centronuclear Myopathy Patient Registry
(MTM-CNM) international patient registry
The team is currently recruiting patients and encourage clinicians to share information about the study with their patients who meet the study criteria: - have received a genetic diagnosis of XL MTM
- have previously received MRI neuroimaging
If any of your patients meet the above criteria, please encourage them to sign up through the MTM-CNM and provide them with the study patient letter.
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Share your experience with Outcome Measures in NMDs through a short survey | |
As we anticipate novel treatments for neuromuscular conditions, we would like to understand your familiarity and experience with the outcome measures in clinical trials underway or for treatments for NMDs approved in other jurisdictions. This information will help us in identifying and addressing any training needs or gaps through the development of workshops and resources.
We are asking neurologists, physiatrists, physiotherapists, occupational therapists, and neuromuscular nurses who conduct outcome measures as part of clinical trials and/or clinical practice to take 3-5 minutes to complete our survey. | |
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Register for our upcoming Neuromuscular Mystery Case Rounds webinars! | |
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Audience: Priority will be patient partners and other people with lived experience; health researchers and trainees are encouraged to join as well.
The 2024 PxP (For Patients, By Patients) conference, will take place September 10-12. The purpose of the event is to share resources, mentorship and community with patient partners and others involved in health research. Ultimately, the goal is partnering to make research stronger. Register for free here! | |
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Western Canadian Neuromuscular Conference September 27-29, 2024, Calgary, AB | | | |
Audience: General neurologists, neuromuscular specialists, physical medicine and rehabilitation specialists, trainee physicians and allied health members from the neuromuscular community.
The Western Canadian Neuromuscular Conference program is now available, and registration is still open. The WCNMC research symposium on Sunday September 29 will focus on trainee-led basic science, translational, clinical, and qualitative research related to neuromuscular disease. All attendees who wish to present their research at the event are invited to submit an abstract for consideration! Abstracts for the research symposium will be accepted until September 6, 2024. Abstracts can be submitted via the conference website's abstract submission/registration page. | |
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7th National Neuromuscular Review Course October 25 - 26, 2024, Montreal, QC
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Audience: PGY2, PGY3, and fellows from Canada, the US, and South America, practicing community neurologists.
Hosted by the Montreal Neurological Institute - The Neuro this course will present experts who will provide a state-of-the-art overview of topics such as motor neuron diseases, pediatrics, neuropathies, neuromuscular junction diseases and myopathies. Find out more information about the neuromuscular review course! | |
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Canadian Rare Disease Network - Town Hall October 31, 2024, 2:00pm ET | |
Audience: People with lived/living experience of rare diseases (inclusive of people directly affected by a rare disease and their families/caregivers), researchers and healthcare providers (inclusive of clinicians, nurses, psychologists, community care providers), advocates and community members interested in rare diseases. | |
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Breakthroughs in Muscular Dystrophy Conference November 19-20, 2024, Chicago, IL (+ Virtually)
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Audience: Researchers and clinicians from the neuromuscular disease community.
Join American Society of Gene and Cell Therapy and the Muscular Dystrophy Association in Chicago at this inaugural conference on the latest advancements in research on gene and cell therapies for muscular dystrophy. Check out the full program and registration here! | |
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International Symposium on ALS/MND & Satellite Meetings December 6-8, 2024, Montréal, QC | | | |
Audience: researchers, health and social care professionals.
This symposium is the largest medical and scientific conference specific to MND/ALS and is the premier event in the MND research calendar for discussion on the latest advances in research and clinical management. Several satellite meetings are scheduled around this meeting including the Third International PLS Conference on December 4, 2024. Please find the complete list here. | |
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New Publications & Research | |
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Subsidized Clinical Trial Services from RareKids-CAN | |
Did you know RareKids-CAN offers a range of subsidized services for investigator-initiated (academic-led) pediatric rare disease clinical trials? Their goal is to stretch project funds further, ensuring greater impact and cost savings. | | | |
RareKids-CAN will cover 100% of the cost of the following services: consultations, high-level project management, database build, and a Data Safety Monitoring Board. RareKids-CAN will cover 50% of the cost of the following: regulatory submissions and monitoring. Learn more about these services on our website, and if you have a clinical trial that require these services or would like to further discuss, you can complete the project intake form here. | |
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September 15th is International Myotonic Dystrophy Awareness Day | |
This September 15th is International Myotonic Dystrophy Awareness Day! Since 2021, landmarks around the world light up green on this special day with the hope of raising awareness around this disease. Last year Julie LeBoeuf and her daughter Alexandra arranged to have the CN tower light up green for the first time, and are excited to announce it will shine brightly once again this September 15th 2024. Learn more about how you can help raise awareness for DM1 this September! | | | |
New Myotonic dystrophy support group facilitator for Canada | We are happy to share that Julie LeBoeuf is the new Myotonic dystrophy support group facilitator for all of Canada. In this role she supports Canadian families affected by Myotonic dystrophy. Julie runs virtual meetings for the group alongside her daughter Alexandra, who in 2021 won the international competition to design the official awareness day logo still in use today! | | | |
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September is Duchenne Awareness Month | This September, join Defeat Duchenne Canada in shining a light on Duchenne muscular dystrophy, a muscle-wasting condition affecting 1 in 5,000 boys. For the 2024 World Duchenne Awareness Day on September 7, 2024, help turn landmarks red, share your Time is Muscle stories, and help to connect more families to Defeat Duchenne Canada. Every voice raised brings us closer to a cure and a brighter future for those affected by Duchenne. Your action next month can inspire hope and change the lives of families across the country. Learn how to get involved. | | Defeat Duchenne Canada Family Forum |
Defeat Duchenne Canada’s Family Forum is the country’s only national education program specifically designed for families living with Duchenne muscular dystrophy. Held from September 21-22 in Ottawa, ON, the forum invites families and caregivers to gather to learn more about the latest advancements in research, clinical trials, care, and advocacy from leading experts. Join DDC for a weekend full of education, inspiration, and hope. | | | |
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Emerging Leaders Webinar and Workshop Series CIHR-Institute of Musculoskeletal Health and Arthritis | |
The Emerging Leaders Series at CIHR-IMHA is designed to support learning and career development for a new generation of equitable and inclusive leaders in health research. | | | |
Participants will engage in a series of six educational panel sessions, webinars, and workshops, tailored to promote best practice and increase capacity in Indigenous Health Research, Open Science, Research Impact, Team Science, Patient Engagement, and Implementation Science methodologies across the CIHR-IMHA research communities. The series is particularly geared towards trainees, early-career researchers and patient partners. However, anyone involved in health research in Canada is welcome to attend. Find out more about the series here! | |
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Diplôme Inter-Universitaire de Myologie : Ouverture des candidatures Sorbonne Université et l’AFM-Téléthon
*Available in French only
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Les candidatures pour la session 2024-2025 du Diplôme Inter-Universitaire (DIU) de Myologie sont ouvertes ! Coordonné par Dr Guillaume BASSEZ, Dr Gisèle BONNE et Pr Shahram ATTARIAN le DIU a pour objectif de fournir une formation théorique et pratique en myologie, destinée à une meilleure évaluation et prise en charge des personnes atteintes de pathologie neuromusculaire et au développement de la recherche clinique et biologique dans ce domaine. | | | |
Cette session se déroulera de décembre 2024 et mai 2025 (examen écrit en juin et soutenance en octobre 2025). Si vous souhaitez candidater, veuillez adresser votre CV et lettre de motivation à diumyologie@institut-myologie.org ; Clôture des candidatures le 31 octobre 2024. | |
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2025 MDF Research Fellowships & Grants | |
The Myotonic Dystrophy Foundation launched four grant programs aimed at accelerating research efforts to improve the lives of individuals affected by myotonic dystrophy and pave the way toward finding effective treatments and ultimately a cure for this challenging condition. | | | |
There are multiple opportunities available: - 2025 Research Fellow RFA (deadline September 13, 2024)
- 2025 Early Career Scholars RFA (deadline September 13, 2024)
- Small Grants Program RFA (accepted on a rolling basis)
Learn more & get ready to apply here. | |
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Stem Cell Network: 2025-2029 Research Funding Competition | | | |
The Stem Cell Network's (SCN) national research funding competition supports world-class, translational, regenerative medicine research, across the research continuum, to facilitate health, social and economic benefits for Canadians. The SCN announced the first of two national research funding competitions planned for SCN’s 2025-2029 funding cycle is officially open as of Tuesday, September 3, 2024, offering 24- and 36-month awards. Six regenerative medicine research programs are available:- Accelerating Clinical Translation Awards
- Clinical Trial Awards
- Early Career Researcher Jump Start Awards
- Fueling Biotechnology Partnerships Awards
- Impact Awards
- Impact Awards: ELSI & HE Stream
The Competition opens today, September 3, 2024 with the deadline to submit a letter of intent Tuesday, September 24, 2024, at 11:59 p.m. PT. | |
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Share your news & events with the NMD4C | |
If you or your organization are hosting a neuromuscular event, conference or webinar, we would like to help you share it with our neuromuscular members! For further information and to have the NMD4C share your event, please contact network communications coordinator James Davis. | | | |
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Previous issues of the NMD4C newsletter You can view all of the previous editions of the NMD4C newsletter on our website!
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Our mailing address is: CHEO Research Institute, 401 Smyth Road, Ottawa, ON, Canada, K1H 8L1
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You are receiving this email as a subscriber to the NMD4C newsletter. If you'd like to change how you receive these emails you can update your preferences or unsubscribe from this list. or contact NMD4C coordinator James Davis at jadavis@cheo.on.ca with your request. | |
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