OPMD Awareness Day Webinar, watch it now: Watch Webinar
OPMD is a rare, genetic, degenerative disease affecting adults with symptom onset beginning between 40-50 years. Many have the following symptoms:
The 2025 OPMD Awareness Day Webinar video presents clinical insights, patient perspectives, clinical trial updates and resources.
Dr. Matthew Wicklund, MD, FAAN, Professor of Neurology and Vice Chair for Research at UT Health San Antonio in Texas, will speak on the role of neurology in OPMD management and the referral pathway.
Dr. Mike Yang, MD, Director of the UT Voice Center in the Dept. of Otolaryngology–Head and Neck Surgery at the UT Health Science Center, will discuss swallowing mechanics in OPMD and symptom-based decision-making in guiding treatment pathways.
Rachelle Speer, SLP, Speech Pathologist, UT Voice Center, Dept. of Otolaryngology- Head/ Neck Surgery at the UT Health Science Center, will discuss how an integrated laryngology team approaches patient care starting from first arrival in clinic.
Dr. Jerel Banks, M.D., Ph.D. Benitec Biopharma CEO & Chairman of the Board will share updates on Benitec’s clinical development program for its investigational gene therapy agent BB-301.
Maureen Costello, an OPMD spokesperson and patient diagnosed in 2020, moderates the discussion and shares her perspective to empower others to be proactive on their journeys living with a rare, genetic disease.
Michele Mulholland, Founder and CEO of the OPMD Association, will share more about the importance of OPMD Awareness Day, resources and support, and advocating for the OPMD Community to forward finding a cure.
The mission of the OPMD Association is to advocate for and serve people affected with Oculopharyngeal Muscular Dystrophy (OPMD) by providing education, resources and programs and by creating partnerships with research institutions and corporations in order to discover treatments and a cure for OPMD.
To advocate for and serve the OPMD Community and also to partner with those committed to developing treatments and finding a cure
The OPMD Association provides information and resources to patients, caregivers and family members. We work to foster partnerships with clinicians, researchers and pharmaceutical companies.
Featured Short Film by Maureen Costello
Maureen details her experience with OPMD to raise awareness for OPMD and to help those affected by OPMD.
The OPMD Association works to help those affected by OPMD
Meet OPMD patients, caregivers, advocates and clinicians who share their journey with this disease.
Putting the resources you need in your hands
The OPMD Association provides help finding care centers and clinicians in your area, medical equipment options, therapies, other nonprofit organizations, testing and conferences.
Find out who is working on OPMD
The OPMD Association partners with pharmaceutical companies and research institutions; provides information regarding current and future studies, and shares links to OPMD articles.
Become an OPMD Champion! Advocate, Volunteer, Participate
Our mission is to advocate for and serve people affected with Oculopharyngeal Muscular Dystrophy (OPMD) by providing education, resources and programs and by creating partnerships with research institutions and corporations in order to discover treatments and a cure for OPMD. The OPMD Association is currently an all-volunteer organization. We need people with all types of skills. Help us advocate for the OPMD Community!
Attend conferences, awareness days, fundraisers and webinars
Sign up for OPMD Matters
OPMD Association Newsletter
Find us on social media!
