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Voices
from our community

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.

Dyne and Notre Dame: A Shared Commitment to Patient Advocacy

Dyne has partnered with Notre Dame to support its new minor in science and patient advocacy, a unique program to prepare the next generation of leaders for careers focused on improving patient care. In September 2021, Dyne collaborated with Notre Dame to convene a Rare Patient Advocacy Summit at the university, followed by hosting two students from the Class of 2022, Bailey Perczak and Alyssa DiPaolo, as summer interns. Watch Bailey and Alyssa, as well as leaders from Notre Dame and Dyne, describe the importance of incorporating community members’ voices in the drug development process here:

Rare Disease Day 2022

Each February, Rare Disease Day aims to raise awareness of the impact that rare diseases have on over 300 million people around the world.

In 2022, Dyne hosted members of the DM1, DMD and FSHD communities to discuss the importance of recognizing Rare Disease Day and our shared commitment to supporting people living with rare muscle diseases. Watch the video below to hear their perspectives.

A Courageous Family Battle

The diagnosis of a serious muscle disease like myotonic dystrophy is devastating for families, and Loraine Dressler’s family received three of them in the span of just a few days. Loraine drew on her nursing experience, developing care strategies for her daughter, grandson and her own progressing disease symptoms. Her expertise and capacity as a caregiver ultimately led her to reach further, joining MDF as a support group facilitator.

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Loraine's Story

Finding Strength Beyond Muscle

“It is only consistent in its inconsistency,” describes Chelsea Moeller about her experience living with FSHD. In recognition of 2022 World FSHD Day, Chelsea shares her perspective on FSHD and her hopes for a treatment in the video below. Additionally, Chelsea and her mother, Laura Adams talk about how FSHD 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.

Hear from Chelsea in the video below or read more.

Chelsea Moeller and her mother

Myotonic Dystrophy Type 1 (DM1)

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.

In 2020, we honored Rare Disease Day with a fireside chat with Joachim Boekelmann, a dedicated father, husband and attorney who lives with DM1. Joachim has also shared his thoughts about living with a rare, degenerative disease, and his hopes for the future.

Duchenne Muscular Dystrophy (DMD)

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.

World Duchenne Awareness Day 2021 Panel Discussion:

In honor of World Duchenne Awareness Day on September 7, 2021, we brought together three men and a community facilitator who live with Duchenne muscular dystrophy (DMD) to discuss their experiences as their disease symptoms change.

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2020 World Duchenne Awareness Day:

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.

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Facioscapulohumeral Muscular Dystrophy (FSHD)

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.

The Faces of 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 Sartin

Rachel Sartin

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Ian Rhys

Ian Rhys

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Chelsea Moeller

Chelsea Moeller

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Sam Miller

Sam Miller

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World FSHD Day 2021 Panel Discussion:

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.

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World FSHD Day 2020:

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.

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Additional Videos

Rare Disease Day 2021:

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.

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