OPMD Awareness Day is over, but you can watch our webinar on YouTube:  Watch Now

There is strength in numbers!

Help us advocate for the OPMD Community

Oculopharyngeal Muscular Dystrophy (OPMD)​

What is OPMD

OPMD is a rare, genetic, degenerative disease affecting adults with symptom onset beginning between 40-50 years. Many have the following symptoms:

Impaired Vision
Difficulty Swallowing
Lower Body Weakness
Speaking Difficulty
Facial Muscle Weakness
Upper Body Weakness

OPMD Awareness Day Webinar video presents clinical insights, patient perspectives, clinical trial updates and resources.

Featured Speakers

Dr. Matthew Wicklund, M.D., FAAN Professor of Neurology and Vice Chair for Research UT Health San Antonio

Dr. Jerel Banks, M.D., Ph.D., Benitec Biopharma Chief Executive Office & Chairman of the Board

Maureen Costello, Webinar moderator, OPMD spokesperson, OPMD Association Volunteer, Diagnosed with OPMD in 2020

Melissa Lopez, Voice for those who are underrepresented, OPMD Association Volunteer, Diagnosed with OPMD in 2024

OPMD Awareness Day Webinar 2024

Play Video

OPMD Association advocates for the OPMD Community

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.

Why we do it

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.

family walking in the park with man in wheelchair
Play Video

Patient Voices

Featured 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

Patient Stories

The OPMD Association works to help those affected by OPMD

Meet OPMD patients, caregivers, advocates and clinicians who share their journey with this disease.

Steve HOPMD Patient
Tony OOPMD Patient
Danny WOPMD Patient
Rebecca HAdvocate
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What resources are available

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.

woman looking at mobile phone with medical icons
Two researchers in modern research lab

What research is being done

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.

How can I get involved

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!

Participate in Community events

Attend conferences, awareness days, fundraisers and webinars

Learn more

Sign up for OPMD Matters
OPMD Association Newsletter