Media
Welcome to the OPMD Association’s media hub. Here you will find episodes from the Voices of OPMD Podcast, recordings of past webinars and other featured videos from patients, clinicians, and the broader community.
Voices of OPMD Podcast
Watch the Latest Episodes:
In this episode, Maureen Costello speaks with newly diagnosed OPMD patient Alaina Albanese about the realities of receiving a life-changing diagnosis, navigating symptoms and uncertainty, and finding ways to move forward with purpose and agency. Dr. Jerel Banks of Benitec Biopharma also joins the conversation to share Benitec’s commitment to supporting and partnering with the OPMD community.
In this episode of OPMD Voices, we sit down with Dr. Sharon Hesterlee, President & CEO of the Muscular Dystrophy Association (MDA), to explore the urgent and evolving landscape of adult-onset muscular diseases. Together, they discuss the current gaps in research, diagnosis, and care—and uncover what it will take to build real momentum for adults navigating neuromuscular conditions.
In this inaugural episode of OPMD Voices, Maureen Costello speaks with Michele Mulholland, Founder and CEO of the Oculopharyngeal Muscular Dystrophy (OPMD) Association, about the organization’s rapid growth from its founding in 2022 to becoming a recognized voice in neuromuscular advocacy and research in 4 short years.
Past Podcast Library
Voices of OPMD
40:25
36:34
Past Webinar Library
Featured Webinar Recording: 2025 OPMD Awareness Day Webinar
| Title | Where to watch/listen |
|---|---|
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September 2025 OPMD Awareness Day Webinar |
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September 2024 Medical Updates Webinar |
Featured Videos
Muscle Memories: Exercising a Powerfully Rare Mindset
A short film by Maureen Costello
Maureen details her experience with OPMD to raise awareness for OPMD and to help those affected by OPMD.
“I firmly believe that everyone affected by a rare disease should not only have a voice but also access to all the resources they need to impact their health and well-being. I’ve learned that to be a true advocate for myself and others, that amplifying my own story is an important step to improve access to quality care.” – Maureen Costello
What is OPMD?
A Q&A with Dr. Anita H. Corbett, PhD
Dr. Anita H. Corbett PhD answers common questions about the causes and treatments of OPMD including:
- What are the genetics behind OPMD?
- What is the goal of Emory’s OPMD research?
- How will the “mouse model” play a role in OPMD research?
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