Become an OPMD Champion!
Help us advocate for the OPMD Community
Watch the previously livestreamed webinar here
OPMD Awareness Day Webinar – Register Now!
Join us on Monday, September 23rd for our inaugural webinar moderated by OPMD Association Spokesperson, Maureen Costello
Day: Monday, September 23, 2024
Time: 12p EST
Overview: This important information session will provide patients, their families, and care teams with clinical insights, patient perspectives, clinical trial updates, and resources.
Dr. Matthew Wicklund, M.D., FAAN Professor of Neurology and Vice Chair for Research UT Health San Antonio in Texas, will give an overview of OPMD and discuss current clinical guidelines for OPMD.
Dr. Jerel Banks, M.D., Ph.D. Benitec Biopharma Chief Executive Office & Chairman of the Board, will share Benitec’s clinical development program for its investigational gene therapy agent BB-301.
Maureen Costello, an OPMD spokesperson and patient diagnosed in 2020, shares her perspective to empower others to be proactive in their journeys to health and well-being.
Melissa Lopez, a voice for those who are underrepresented, and an OPMD.org volunteer, shares perspectives from her journey as someone newly-diagnosed with OPMD in 2024.
REGISTER NOW AT:
https://opmd.ejoinme.org/register
Other Ways You Can Get Involved!
- Register and watch our upcoming webinar using this link: https://opmd.ejoinme.org/register
- Share your OPMD story
- Post on your social media
- Change your profile photo to our OPMD Awareness Day image above, and post with these hashtags: #OPMD, #Oculopharyngeal Muscular Dystrophy, #OPMDAwareness, #OPMDAwarenessDaySept23
- Join the OPMD Community Registry
- Share your resources and clinician information
- Host a Facebook Fundraiser
- Share information about OPMD Awareness Day with your friends, family, community using this link: https://opmd.org/event/opmd-awareness-day-2024/
- Participate in Research
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
OPMD is an all volunteer organization. We need you to keep the OPMD momentum going.
#OPMD
#OculopharyngealMuscularDystrophy
#OPMDAwareness
#OPMDAwarenessDaySept23