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If you are a patient or family member, FSHD University is your center for education about the art and science of living with FSH muscular dystrophy.
We focus on three "departments" – Physical Health, Wellness, and Research – drawing on the many resourceful, creative people in our community who have earned their MDs and PhDs in living with FSHD. Over time, we expect to establish new departments to address additional areas where we see a thirst for knowledge. Your input and suggestions are very much welcome.
This is YOUR university!
FSHD University video playlist
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Managing pain in individuals with FSHD
From FSHD University. For more information, visit fshdsociety.org.
Around 70-80 percent of individuals diagnosed with facioscapulohumeral muscular dystrophy report that pain is a significant part of their condition. There has been relatively little research or discussion in the medical literature about the nature and cause of pain in FSHD, and on strategies to manage it. In this webinar, neurologist Kathy Mathews, psychologist Krista Kohl, and physical therapist Shelley Mockler discuss multidisciplinary approaches to managing pain.
Katherine D Mathews, MD, FAAN, is Professor of Pediatrics and Neurology and the Vice Chair of Clinical Investigation for the Department of Pediatrics at the University of Iowa Carver College of Medicine. Director of the clinical project at the University of Iowa’s Wellstone Muscular Dystrophy Cooperative Research Center, co-PI for the Iowa NeuroNext site and MD STARnet sites. Co-director of the University of Iowa MDA clinic.
Shelley Mockler, PT, MPT, DSc is a physical therapist and Clinical Specialist at the Center for Disabilities and Development, part of the University of Iowa Stead Family Children’s Hospital. Shelley has worked with children and adults with neuromuscular disorders for over 20 years. She is actively engaged in both clinical care and research in neuromuscular disorders. Shelley is a Board-Certified Clinical Specialist in Pediatric Physical Therapy and a certified Assistive Technology Professional.
Krista Kohl, PhD, is a Pediatric Psychologist in the Division of Developmental and Behavioral Pediatrics, at the University of Iowa Stead Family Children’s Hospital. Dr. Kohl works with an interdisciplinary team as part of the Comprehensive Pain Clinic, Abdominal Pain Clinic, and Headache clinic. Dr. Kohl provides outpatient psychotherapy for children and adolescents with chronic pain and comorbid anxiety, depression, or other psychosocial stressors. She also provides inpatient consultation for children and adolescents struggling with acute and chronic pain conditions. -
Fulcrum’s Phase 3 Clinical Trial
FSHD Society and Fulcrum Therapeutics held a community webinar announcing REACH, the 1st Phase 3 clinical trial in FSHD.
REACH will enroll ~230 patients at clinical sites in US, Canada and Europe beginning this spring. Learn about the trial design and activation in this webinar. Speakers include FSHD Society Leadership along with Judy Dunn, President of Research and Development, Fulcrum Therapeutics. -
Solve FSHD, Treatment Accelerator
Eva Chin, PhD. is Executive Director of Solve FSHD, a recently formed Canadian company that is focused on accelerating the development of treatments for FSHD.
Eva is a Canadian-trained scientist who has had an international career pursuing her curiosity to understand the defects of skeletal muscle in various diseases and now is passionate about finding effective therapies to treat rare neuromuscular diseases. As the inaugural Executive Director for Solve FSHD, Eva will apply that passion and her insight into muscle biology and drug discovery and development to tackle the barriers and accelerate a cure for Facioscapulohumeral muscular dystrophy (FSHD). Together with the relentless drive and support of founders Chip Wilson, Neil Camarta and Byron Horner, this team will Solve FSHD!
For more information, visit fshdsociety.org. Click on CC for closed captions, and to choose a language for subtitles.
Departments
Physical Health
Best practices in medical care, physical therapy, and exercise for FSHD can improve health and overall function in many individuals.
Wellness
Disability and unpredictability take a toll on mental health and well-being. Learn how to manage stress and anxiety and find happiness.
Research
Understanding research can guide best practices in care and empower you to engage in impactful ways with research and drug development.
Looking for Sequester Camp? Our weekly program of health, fitness, and research webinars launched at the start of the Covid-19 lockdown (March-June 2020). Access all that great information HERE.
Disclaimer
Information provided by the FSHD Society does not imply an endorsement of any of the drugs, procedures, treatments, or products discussed. Please consult your own healthcare provider about any medical interventions.