OPMD Association Non-Profit

Advocates for Oculopharyngeal Muscular Dystrophy.

[OPMD Association Non-Profit @OPMDadvocate]

On-Demand MDA webinar, Spotlight on: OPMD, 5-14-26. Topics: latest research developments, treatment strategies, supportive care options. presenter Dr. Matthew Wicklund, Neurologist & Vice Chair of Research at UTSA. Sponsor/ #BenitecBiopharma. https://t.co/n47JcwOQQY #OPMD #MDA

[Practical Neurology @PracticalNeuro]

Progressive #ptosis & #dysphagia in midlife should raise suspicion for more than normal #aging.

A review by Drs. Minna Choi & Elina Zakin (@EZakinMD) examines the clinical features, genetics, diagnostic workup, & management of #oculopharyngeal muscular #dystrophy (#OPMD), a rare and often underrecognized #PABPN1-related #myopathy.

https://t.co/to6b29Hzh8

#Neurology #Neuromuscular @AANEMorg @AANmember @nyulangone

[OPMD Association Non-Profit @OPMDadvocate]

June is Dysphagia Awareness Month ~ In OPMD Dysphagia is first noticed for solid foods but may progress to include liquids as well. Find helpful cookbooks here, https://t.co/NnQU2kxu51 #OPMD #OculopharyngealMuscularDystrophy #OPMDassociation #Dysphagia

[Muscular Dystrophy Canada @MD_Canada]

What does it take to bring more neuromuscular clinical trials to Canada and expand opportunities for Canadians to participate in trials for innovative treatments and therapies?

Our newly published paper in the Orphanet Journal of Rare Diseases explores exactly that. We are proud to share the publication of "Implementation of a Neuromuscular Clinical Trial Network: A Rare Disease Model for Enhancing Clinical Trial Readiness, Capacity, and Access in Canada."

As the number of neuromuscular clinical trials continues to grow, it is critical that Canada has the partnerships, expertise, and infrastructure needed to support high-quality clinical research and connect patients with trial opportunities. For many individuals living with neuromuscular disorders, clinical trials represent the first opportunity to access innovative therapies years before they become publicly available. Yet too often, Canadians face barriers to participation, including geography, limited site capacity, and the need to travel long distances or even leave the country to access trials. This paper describes the development of Canada's Neuromuscular Clinical Trial Network (CTN), a national initiative that brings together clinicians, researchers, trial coordinators, patient organizations, industry partners, and people with lived experience to strengthen the clinical trial ecosystem across the country.

Three key learnings emerged from this work:

1️⃣ Clinical trial success requires more than scientific innovation. Dedicated infrastructure, trained personnel, streamlined processes, and collaboration across institutions are essential to attracting and delivering trials.

2️⃣ Individuals affected by neuromuscular disorders and families must be partners, not participants alone. Meaningful engagement of people with lived experience strengthens trial design, recruitment, retention, relevance, and patient-centredness.

3️⃣ National coordination creates opportunities. By connecting expertise, sharing resources, and reducing duplication, networks can enhance trial readiness, expand access, and help more Canadians participate in research regardless of where they live.

For Muscular Dystrophy Canada, this work is about breaking down barriers to clinical trial participation and addressing a challenge we continue to highlight through our What About Canada? initiative: Canadians should not have to leave the country, navigate fragmented systems, or wait years longer than others to access innovative treatments and therapies. By supporting the development of the CTN in partnership with the Neuromuscular Disease Network for Canada (NMD4C), we are ensuring opportunities for Canadians to participate in research grows and helps ensure Canada remains at the forefront of neuromuscular therapeutic development.

Read it here: https://t.co/sgUKut2pd6

[OPMD Association Non-Profit @OPMDadvocate]

Did you know there's a Global #OPMD Patient Registry? OPMD Assoc is partnering w/CoRDS (Coordination of Rare Diseases-Sanford) Research. Goal-enhance understanding & awareness of #oculopharyngealmusculardystrophy through this comprehensive registry. https://t.co/S9Akm1gerV

[OPMD Association Non-Profit @OPMDadvocate]

The April 2026 issue of Practical Neurology includes an article on Oculopharyngeal Muscular Dystrophy (OPMD)- Minna Choi, MD; Elina Zakin, MD #OPMD https://t.co/qOWjAxZ0tT

[OPMD Association Non-Profit @OPMDadvocate]

@MD_Canada Thank you for advocating for OPMD! 🌻

[BiotechTV @BiotechTV]

𝐀𝐒𝐆𝐂𝐓 𝟐𝟎𝟐𝟔: @BenitecBio presented a clinical update of its lead DNA-directed RNA interference program targeting Oculopharyngeal Muscular Dystrophy (OPMD). $BNTC #ASGCT2026

Full video: https://t.co/kSUwRZwpa4

[Neuro Op Guru @AndrewGoLeeMD]

What is Oculopharyngeal Muscular Dystrophy (OPMD)?
OPMD is an autosomal dominant condition causing PABN1 buildup, leading to pharyngeal muscle weakness, ophthalmoplegia, and ptosis.
Learn more here: https://t.co/Ozd46ZCBey
#Genetics #NeuroOp #Ophthalmology

[OPMD Association Non-Profit @OPMDadvocate]

@AndrewGoLeeMD Excellent video on OPMD! Thank you!

[OPMD Association Non-Profit @OPMDadvocate]

The Muscular Dystrophy Association has created this helpful OPMD Fact Sheet, which they shared during their recent Webinar, Spotlight on OPMD (available soon On-Demand). We hope you find it helpful. https://t.co/gnFEz7zqfj
Visit https://t.co/Mnn0GnrI4i to learn more about OPMD.

[OPMD Association Non-Profit @OPMDadvocate]

Check out our latest Newsletter and sign up for future editions, https://t.co/RRngDjVv1V

[OPMD Association Non-Profit @OPMDadvocate]

MDA's OPMD Spotlight Live Webinar is one week away! May 14, 2026 -4:30pm - 5:30pm ET -Join MDA for an informative webinar focused on OPMD. Webinar Supporter: Benitec Biopharma --Speaker: Dr. Matthew Wicklund #OPMD #MDA https://t.co/H70pf0pXPV

[OPMD Association Non-Profit @OPMDadvocate]

OPMD News~MDA Spotlight On: Oculopharyngeal Muscular Dystrophy. May 14th, 2026 -4:30pm - 5:30pm ET, Live, Virtual Webinar. Join MDA for an informative webinar focused on #OPMD -latest research developments, treatment strategies, and supportive care options https://t.co/H70pf0pXPV

[OPMD Association Non-Profit @OPMDadvocate]

News of interest in OPMD~MDA Spotlight On: Oculopharyngeal Muscular Dystrophy. May 14th, 2026
4:30pm - 5:30pm ET Live, Virtual Webinar https://t.co/H70pf0pXPV

[Muscular Dystrophy UK @MDUK_News]

Martin was an active 40 year old - running marathons, regularly attending the gym. Now, walking a mile to the shops is a challenge.

He started noticing symptoms of oculopharyngeal muscular dystrophy (OPMD) in his 40s and is now adapting to his new routine.

[OPMD Association Non-Profit @OPMDadvocate]

April/National Volunteer Month, a meaningful time to celebrate & show our heartfelt appreciation and sincerity to those who volunteer for the OPMD Association and support the OPMD Community. THANK YOU to the amazing people who make our work possible! https://t.co/Mnn0GnrI4i 💙

[OPMD Association Non-Profit @OPMDadvocate]

MDA's Quest Magazine has some informative articles! Here's their latest issue, https://t.co/0LGjzGsdSr

[OPMD Association Non-Profit @OPMDadvocate]

Check out our latest Newsletter and sign up for future editions, #OPMD
https://t.co/DLbdeYyx30

[OPMD Association Non-Profit @OPMDadvocate]

Jerel A. Banks, MD, PhD, on Evaluating Gene Therapy BB-301 for OPMD-Related Dysphagia on CGT Live https://t.co/zy4TthVrWT