At Dyne, we are committed to listening to and learning from the communities that we hope to serve – including individuals and families living with DM1, DMD and FSHD. Your stories inspire us. Equally important, they provide insights and information about disease burden and meaningful benefit that we know is critical to developing truly transformative therapies. We will continue to update this page to highlight people living with DM1, DMD and FSHD.
Bringing together voices across the FSHD community to discuss their experiences, advocacy, research efforts and hopes for the future.
To mark 2021 World FSHD Day, we brought together a variety of perspectives focused on this year’s theme “unite for a cure.” We were joined by individuals living with FSHD, clinical researchers, patient advocacy organizations and others to explore how we can best partner to accelerate the development of much needed therapies and access to quality care.watch video
Joint perspective of a mother and daughter’s journey with FSHD
The mother and daughter duo Laura Adams and Chelsea Moeller share with us their perspectives of living with Facioscapulohumeral muscular dystrophy (FSHD) and how each of their experiences has affected different aspects of their lives. While each has their own unique story to tell, they have found great comfort in sharing their disease journey, including the ability to find strength and humor in one another.read more
Each February, Rare Disease Day aims to harness the creativity and energy of the millions of people around the world living with rare diseases to raise awareness and generate action.
In 2021, we held a virtual roundtable discussion with participants from across the rare muscle disease community in honor of Rare Disease Day. Hear their unique perspectives in the video below.
Myotonic dystrophy type 1 (DM1) is a rare muscle disease that causes muscle weakness (myopathy), trouble relaxing a muscle (myotonia) and muscle wasting that gets worse over time (atrophy). The disease is highly variable, and progression varies from person to person. There are currently no approved therapies for DM1.
Duchenne muscular dystrophy (DMD) is a rare genetic muscle disease that primarily affects males and is characterized by progressive muscle loss. There is significant need for transformative therapies for boys and young men living with DMD.
In honor of World Duchenne Awareness Day (WDAD) on September 7, 2020, we hosted a fireside chat with DMD community members Ravi Lipman, Beth Baumgartner and Diana Johnson to hear their stories and perspectives on life with DMD. Separately, Ravi has also shared more about his personal experience living with DMD.watch video
Facioscapulohumeral muscular dystrophy (FSHD) is a rare, genetic disorder that leads to progressive weakening of skeletal muscles, muscle loss, fatigue and often chronic pain. Most affected people begin to experience symptoms in their early teen years to their early 20s. There are no approved therapies for FSHD.
Living with FSHD has profound impacts on every part of peoples’ lives, from work and socializing to family life. Community members have shared moving examples of living with FSHD with our team and have told us what it would mean to them to have a transformative therapy for their disease.
Rachel Sartinwatch video
Ian Rhyswatch video
Chelsea Moellerwatch video
Sam Millerwatch video
FSHD community members Russell Caratenuto, Angela and Laszlo Farkas and Howard Chabner joined our virtual fireside chat in June 2020 to talk about their individual journeys living with this disease. Howard has also shared more about his experience living with this relentless disease.watch video