We're looking for children & adults with Nemaline Myopathy to join a study to collect data on the natural progression of the condition.

Help us understand Nemaline Myopathy to be ready for therapeutic developments

See more at bit.ly/3HeoRPc

#NemalineMyopathy #RareDisease

This article was very fittingly published during Nemaline Myopathy Awareness Month – please take a look at buildingstrength.org for more information on how to get involved. 💙
#NMAwarenessMonth #NemalineMyopathy #AFBS (6/6)

Grateful to be working with a physical therapist who specializes in Neurology…I now know what to do on my own at the gym between visits with her. May is #nemalinemyopathy Awareness Month.

This article was very fittingly published during the Nemaline Myopathy Awareness Month – please take a look at buildingstrength.org for more information on how to get involved 💙
#NMAwarenessMonth #NemalineMyopathy #AFBS (5/5)

May is Nemaline Myopathy Awareness Month (I recently learned this). I am mostly in gratitude, because if you click on the #nemalinemyopathy you’ll find young children in wheelchairs, many on respirators. I have lived to be a 63-year-old man. Self-care IS #resistance

Wonderful last meeting for 2024 b/t our team and that of Prof David Mack @UWash - modelling & treatments for #nemalinemyopathy. This work is supported by A Foundation Building Strength and Hearts & Minds and @perkinsinstitute.bsky.social #myopathy #iPSC #organoids