OPMD Association Non-Profit

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.

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! OPMD.org 💙

MDA's Quest Magazine has some informative articles! Here's their latest issue, mdaquest.org/issue/quest-is…

Check out our latest Newsletter and sign up for future editions, #OPMD opmd.org/newsletter/

Jerel A. Banks, MD, PhD, on Evaluating Gene Therapy BB-301 for OPMD-Related Dysphagia on CGT Live cgtlive.com/view/banks-eva…

30 days ago/Rare Disease Day, we launched Voices of OPMD. Since then: Conversations started. Partnerships strengthened. New voices reached out. Momentum grew. This is only the beginning. Rare should never mean overlooked. Watch Episodes 1 & 2 here: opmd.org/media/

The president and CEO of the Muscular Dystrophy Association talks about what she's most excited about in neuromuscular disease research. musculardystrophynews.com/news/interview… #musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD

The MDA's annual conference highlighted recent breakthroughs and the outlook for future care in the neuromuscular disease community. buff.ly/utBSY3y #musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD

Why launch a podcast? Because too many conversations about adult-onset muscular disease happen behind closed doors. Because policy change requires visibility. Because community requires voice. Voices of OPMD is just getting started. Tune in Episodes 1 & 2: ttps://opmd.org/media/

We're at the 2026 MDA Clinical & Scientific Conference this week! Our spokesperson, Maureen Costello, and our newest OPMD Association Advocate, Midori Yokoyama are hosting the OPMD Association booth and connecting with clinicians, researchers and advocates. #OPMD #MDAconference

Benitec Reports Promising Interim Results with 100% Response Rate in BB-301 Gene Therapy Trial for Oculopharyngeal Muscular Dystrophy - For More Information Visit shorturl.at/tlFXR @BenitecBio #Rare_Diseases #Oculopharyngeal_Muscular_Dystrophy #Orphan_Drugs

Consuming more dietary protein may benefit people with various types of muscular dystrophy, according to a recent study. buff.ly/yEyCKdm #musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD

The 2026 MDA Clinical & Scientific Conference starts today! We'll speak at the Benitec Breakfast 3/10 and attend the Neuromuscular Advocacy Collaborative connecting w/clinicians, researchers and advocates who are shaping the future of neuromuscular care. Please stop by our booth

News of Interest in OPMD~OPMD Association Volunteer Maureen Costello will be speaking during the Benitec Breakfast, March 10th at the 2026 MDA Clinical & Scientific Conference which is available to watch virtually if you register ahead here, mdaconference.org/mda.../registr… #OPMD

Rare Disease Day is about visibility. Ep. 2 of Voices of OPMD is about making a difference in a systemic way. Maureen Costello w/ Dr. Sharon Hesterlee, President & CEO of the #MDA, discusses what it will take to accelerate progress in the adult NMD. #RareDiseaseDay" target="_blank" rel="nofollow noopener">opmd.org/media/#RareDis… #OPMD

Today, Rare Disease Day. View our inaugural launch of Voices of OPMD. The Why Behind the OPMD Association; Michele Mulholland speaks to host Maureen Costello sharing how a grassroots effort became a growing force for #OPMD opmd.org/media/ #RareDiseaseDay #OPMDVoices

Oculopharyngeal muscular dystrophy (OPMD) associated alanine expansion impairs the function of the nuclear polyadenosine RNA binding protein PABPN1 as revealed by proximity labeling and comparative proteomics: journals.plos.org/plosgenetics/a…

@MD_Canada Informative MD publication, thank you!

A new peer-reviewed publication led by Muscular Dystrophy Canada (MDC) highlights the hidden financial costs of living with neuromuscular disorders. This is something we know all too well: for individuals and families, the cost of living with an NMD extends far beyond medical care in Canada. Read the publication here: onlinelibrary.wiley.com/doi/10.1111/he… This qualitative study builds on findings from MDC’s Burden of Inherited Neuromuscular Disease (BIND) national cost-of-illness survey led by Dr. Jodi Warman-Chardon and funded by CIHR. Through in-depth focus groups, Canadians described the real-world financial strain behind the numbers, including: ➡️ Time spent navigating fragmented and complex healthcare and community systems ➡️ Lost income and missed career opportunities due to life with a neuromuscular disorder ➡️ Significant out-of-pocket costs for equipment, assistive devices, respite, home and vehicle modifications ➡️ The emotional toll of ongoing advocacy to maintain independence So what? These findings confirm that the true cost of neuromuscular disorders goes far beyond clinic visits and hospital stays and that even families who are financially stable can struggle under the weight of ongoing, out-of-pocket costs. At Muscular Dystrophy Canada, this reality is exactly why we have long invested in programs like our Equipment Program, which, thanks to the generosity of our donors, Canadian Fire Fighters, and supporters, helps offset the high costs of assistive devices, home modifications, and vehicle adaptations. MDC is also using evidence like this to drive advocacy. We are actively working to influence how much governments fund assistive devices and equipment so access is more equitable, adequate, and reflective of the real-world needs of Canadians with neuromuscular disorders. To learn more about Muscular Dystrophy Canada, please visit muscle.ca

Sign up to our upcoming Information Days 👇 📍York – Saturday 28 February: loom.ly/eJNeQ3Y 📍 Birmingham – Saturday 14 March: loom.ly/58vZho4 📍 Scotland – Saturday 28 March: loom.ly/ZyeOEco