With Nicol Voermans, MD PhD, and Nathaniël Rasing, MD 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT While FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have […]
Breathing with FSHD, Andrea Klein 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Today’s webinar discusses how to monitor and manage breathing issues that can arise in people with FSHD. Our presenter, Andrea Klein, founded Breathe with MD, Inc. in memory of […]
Finding reliable health information on the Internet, with Tina Griffin 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT Most of us turn to “Dr. Google” to find medical and health information, but how do we know the information is trustworthy? When our health […]
With Jennifer Egert, PhD, and patients and family members 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT This month's webinar will be a roundtable discussion on the challenges of communicating with those close to you about FSHD, how it is impacting you, and […]
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on Wednesday, April 24th for a virtual chapter meeting North Texas is opening to all Texas community members. During this chapter meeting, we will be joined by guest speaker, Attorney Brandon A. Rotbart, P.A. who will discuss […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT This World FSHD Day join the Avidity Biosciences team as they share an update on the FORTITUDETM study on FSHD University. The Avidity team, joined by Dr. Jeffrey Statland, University of Kansas Medical Center and FORTITUDE trial investigator, will present in-progress […]
Virtual Screening: Good Bad Things Missed seeing Good Bad Things in theaters? Get your tickets for a virtual screening this weekend. The film will be available from 6:00pm PST on Friday, September 20 through 11:59pm PST on Sunday, September 22. Streaming access costs $19.99; you will have 72 hours to watch the film. Help spread […]
2024 Los Angeles Walk & Roll to Cure FSHD Sunday, October 6, 2024 Location: Clover Park, 2600 Ocean Park Blvd, Santa Monica, CA 90405 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Mindfulness is a practice that has been shown in clinical trials to reduce stress, anxiety, and depression, issues that many people living with a progressive condition like FSHD experience. These psychological symptoms can in […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Anesthesia During Surgery for People with FSHD With Bruna M. Castro de Oliveira, MD. Dr. Castro is a board-certified anesthesiologist and director of the orthopedic anesthesia service at Mass General Hospital. Working with Dr. […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Exercise and Physical Therapy for FSHD, with Ulrike Uta, MSc, MCSP. Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Physiotherapy and exercises with FSHD – Optimising mobility and function Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle weakness […]
The Pediatric MOVE Study Thursday, May 15 19:00 CET | 18:00 GMT | 1:00pm Et | 12:00pm CT | 11:00am MT | 10:00am PT More than 50% of people with FSHD develop symptoms as children or teens. When treatments to slow or stop FSHD are approved, common sense suggests that it will be best to […]
Breathing with FSHD Thursday, June 26 5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT Note: This webinar is not at our usual time due to Dr. Benditt’s clinic schedule. Joshua Benditt, MD, University of Washington, is a professor of pulmonary, critical care and sleep medicine at the UW School of Medicine. As […]
The Role of the Physiatrist in Managing FSHD Thursday, July 17 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Most people with FSHD have heard they should see a neurologist. But when we advise them to also establish care with a physiatrist, […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT The Economic Burden of FSHD Presenters: June Kinoshita and Amanda Hill, FSHD Society Living with FSHD comes with many hidden costs—not just physically and emotionally, but financially as well. Yet little is known about […]
2025 Annual Drug Development Update Presenter: Dr. Lawrence Korngut Join us for our final FSHD University webinar of 2025 as we take a deep dive into the latest progress in FSHD drug development. Dr. Lawrence Korngut, Associate Professor of Neurology and Clinical Neurosciences at the University of Calgary, will provide an up-to-date overview of ongoing […]
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