OPMD Awareness Day is on September 23, 2025!
There’s never been a better time to become an OPMD Champion.
Help us advocate for the OPMD Community
September 23 is a day that the OPMD Community comes together to raise awareness of Oculopharyngeal Muscular Dystrophy and to celebrate all members of our community.
Raising OPMD Awareness is as easy as wearing blue and gold. So share a photo with your family, friends and colleagues! When you share the photo, be sure to spread awareness about our upcoming webinar and add the following hashtags: #OPMD, #Oculopharyngeal Muscular Dystrophy, #OPMDAwareness, #OPMDAwarenessDaySept23
Watch the OPMD Awareness Day Webinar
This important information session will provide patients, their
families, and care teams with clinical insights, patient perspectives, clinical trial updates, and resources.
Please share the link to the webinar with your network and
community!
Day:Â Tuesday, September 23, 2025
Time: 12p EST
Sponsored by Benitec Biopharma Inc. (Benitec), a clinical-stage biotechnology company focused on the advancement of novel genetic medicines with headquarters in Hayward, California, and the OPMD Association.
Speakers and Moderator:
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.
Ways you can get involved
Share on Social Media
There are so many ways to spread the word! Just be sure to add the following hashtags to your posts: #OPMD,
#Oculopharyngeal Muscular Dystrophy, #OPMDAwareness, #OPMDAwarenessDaySept23
Social Media Posts
Help us raise awareness on your social media platform of choice by downloading and sharing these posts with your community.
Profile Badge
Let your network know about OPMD Awareness Day by changing your profile photo to our dedicated badge.
Facebook Fundraiser
Hosting a fundraiser for the OPMD Association raises awareness and vital funds needed to operate our 100% volunteer-run organization.
Contribute to the Community
On OPMD Awareness Day and Every Day, OPMD Association
- Acknowledges and Advocates for all members of the OPMD community, especially those who have OPMD and their caregivers.
- Creates awareness opportunities for the public, policy makers, regulators, pharmaceutical representatives, researchers, clinicians, RARE disease organizations and anyone with an interest in changing the future of Oculopharyngeal Muscular Dystrophy.
- Strives to improve services, research, drug development, and advocacy policies.
