Video Session
Taking Charge of your ILD and Myositis
MSU Zoom Video Session Video session using ZoomDr. Cheilonda Johnson is a pulmonologist who sees a lot of patients with interstitial lung disease (ILD) at the University of Pennsylvania in Philadelphia. She will be joining us to talk about ways to take charge of your ILD in a patient-centered webinar.
‘Oh The Places You’ll Go’: Traveling and Exploring with Confidence
MSU Zoom Video Session Video session using ZoomWe’ll review any updated COVID-19 recommendations from the CDC, but spend the majority of the session focused on overcoming some of the challenges people with myositis face when traveling. Share your questions, tips and strategies during registration. Our events are always free. Register and join us on Monday, July 26th, 6 PM ET / 3 PM PT with Megan and Lauren, Occupational Therapists at Johns Hopkins Myositis Center.
The Grieving Project: Creatively Grieving Our Chronic Illnesses Workshop
MSU Zoom Video Session Video session using ZoomRegister to join award-winning artist Lisa Sniderman (Aoede), who has struggled with dermatomyositis for more than 13 years while creating to heal, and Creative Arts Therapist and singer-songwriter Frances Ancheta-Becker, on Zoom as they co-lead a free pilot workshop just for MSU, using music from Sniderman’s The Grieving Project audiobook and other expressive arts to help us move through grief. For those of us living with myositis and for our caregivers.
Live with the Landman’s: Honoring the life of Stella Clapp
MSU Live YouTube MSU YouTube PageTo kick-off Spirit Week, join us LIVE on YouTube for an intimate discussion honoring the life of Stella Clapp with Stella's daughter, Jennifer Schubert.
3rd Annual Myositis Empower Walk
MSU Live YouTube MSU YouTube PageJoin us for the 3rd Annual Myositis Empower Walk either in person at Discovery Park in Henderson, NV, or via live stream, on Saturday, October 2, 2021. Don't miss the activities leading up to, and on the day of the walk!
Community Convos
Other PlatformSAVE THE DATE! On Thursday, December 2, 2021, join our coalition of organizations for an online community "meet up"! Drop in to meet new friends and talk or video chat with others in the myositis community. No agenda, just bringing the community together for connections during this season of togetherness, and thanks!
AllStripes & MSU: You can accelerate drug development in Dermatomyositis!
MSU Zoom Video Session Video session using ZoomAre you interested in advancing research for dermatomyositis? Join us on Friday, December 3rd at 3 PM EST for a webinar with AllStripes as we discuss their new dermatomyositis research program!"
Cannabis and Autoimmune Conditions
MSU Zoom Video Session Video session using ZoomNurse and Cannabis Health Coach, Christine Lee, BSN, PHN, RN will share her personal experience with cannabis, an overview of the Endocannabinoid System, basic information about cannabis as medicine, and benefits vs risks.
Plasma Services Group Giveaway
MSU Zoom Video Session Video session using ZoomOur friends at Plasma Services Group are giving away (5) Five $100 VISA Gift Cards just in time for the holidays! See details and how to enter and join us LIVE on Zoom and Facebook for the live drawing Dec. 15, 2021, starting at 5 PM ET / 2 PM PT.
Poor Long-term Clinical Outcomes and Health-Related Quality of Life in Dermatomyositis and Polymyositis
ZOOM Webinar 9125 N Old State Rd, Lincoln, DE, United StatesRegister and join us on Rare Disease Day, Feb. 28th, for a presentation by Dr. Rohit Aggarwal reviewing current data on the long-term disease outcomes and the true impact of DM and PM on patient’s health-related quality of life.
Intravenous Immune Globulin (IVIg) – A newly approved therapeutic option for the treatment of adult dermatomyositis
MSU Zoom Video Session Video session using ZoomLearn about Octapharma’s IVIg therapy and the results of the landmark Progress in Dermatomyositis (ProDERM) study. The successful ProDERM Study resulted in the first and only FDA-approved IVIg therapy for DM in adults. MSU and Octapharma USA are proud to co-sponsor this exciting educational program with Dr. Rohit Aggarwal.
Clinical Study in Dermatomyositis
MSU Zoom Video Session Video session using ZoomJoin MSU with Sanjay Rakhade MD, PhD, Executive Medical Director at Alexion Astra Zeneca Rare Disease Unit to learn about the Flex Study, a study to evaluate the safety and efficacy of an investigational medication on reducing symptoms of adults with Dermatomyositis.
Immune Globulin Therapy: All your questions answered
MSU Zoom Video Session Video session using ZoomJoin MSU for a webinar with CSI Pharmacy, Immune Globulin Therapy: All your questions answered. This is your opportunity to ask the experts, including patient experts, the questions you have about the therapy such as side effects, brand differences, IV vs SubQ, site of care, insurance, out-of-pocket costs, copay assistance programs and more.
The Power of Our Voice: FDA Listening Session for Adult Dermatomyositis
ZOOM Webinar 9125 N Old State Rd, Lincoln, DE, United StatesThe power of our voice can impact the direction of research and clinical trials. Join us for a virtual Fireside Chat on the lessons learned from our FDA Listening Session for Adult Dermatomyositis.
Simple steps to focus on your emotional wellbeing with Lori Wong
MSU Zoom Video Session Video session using ZoomJoin us for a free interactive workshop with Lori Wong, a person living with inclusion body myositis and retired Stanford-certified Compassion Cultivation Training (CCT) teacher to explore evidence-based steps to support your mental well-being, which are just as important as the steps you take to care for your physical body.
The Power of Our Voice: MSU Pain Study
MSU Zoom Video Session Video session using ZoomJoin for a retrospective look at how a community call to action led to a seminal study on pain in Myositis and what it means for the community, with Drs Salman Bhai and Abhiram Bhashyam, co-authors of Pain profile and opioid medication use in myositis.
Community Convos: Show and Tell
Other PlatformRegister and bring all of your innovations, remarkable hints, hacks, devices, tools, and other things that support your journey with myositis, and be ready to share and discuss them with others on Remo on Aug. 20th.
Independence Chair by VELA – How it can help you stay independent in your home
MSU Zoom Video Session Video session using ZoomJoin MSU as we host Enable Me to present the Independence Chair (VELA Tango Chair) and how it can help those with myositis.
Watch Party – 4th Annual Myositis Empower Walk
MSU Zoom Video Session Video session using ZoomNo registration required and this is open to the public. Invite your friends and family members to join as we watch the live stream of the 4th annual walk. Watch parties are a lot of fun. Join us!