Nemaline Myopathy

What is Nemaline Myopathy

Nemaline myopathy is a disorder that primarily affects skeletal muscles, which are muscles that the body uses for movement. People with nemaline myopathy have muscle weakness (myopathy) throughout the body, but it is typically most severe in the muscles of the face, neck, and limbs. This weakness can worsen over time. Nemaline myopathy has an estimated incidence of 1 in 50,000 individuals. For more information about Nemaline Myopathy please click here.

Useful websites

http://www.nemaline.org/ – this page is regularly updated and has links to others and information

http://www.buildingstrength.org/ – this page is dedicated to a cure and also has a care guide for families

Q&A: Here is where we answer some of our members questions. If you have any questions please email them to info@mda.org.nz and we will endeavour to answer them.

Diseases of the Motor Neurons

Spinal Muscular Atrophy (SMA) – all types including:

  • Type 1 Infantile Progressive SMA/Werdnig Hoffmann Disease
  • Type 2 Intermediate SMA
  • Type 3 Juvenile SMA/Kugelberg-Welander syndrome
  • Type 4 Adult SMA

Spinal Bulbar Muscular Atrophy (SBMA) / Kennedy’s Disease and X-linked SBMA

Spinal Muscular Atrophy with Respiratory Distress (SMARD1) / Distal SMA Type 1 (DSMA1) / Distal Hereditary Motor Neuropathy

Q&A: Here is where we answer some of our members questions. If you have any questions please email them to info@mda.org.nz and we will endeavour to answer them.