3rd Annual AFBS Golf Event
Somers Pointe Golf Club, Somers, NY
Thursday, June 20, 2013
Check-in & Breakfast start at 9:00 a.m.

What is Nemaline Myopathy?

Nemaline myopathy (NM) is a group of congenital, hereditary neuromuscular disorders that cause muscle weakness, generally nonprogressive, of varying severity where severe forms show up to 66% mortality rates before the age of two.

"Myopathy" means "muscle disease", and a biopsy of muscle from a person with nemaline myopathy shows abnormal thread–like rods, called nemaline bodies, in the muscle cells. People with nemaline myopathy (or NM) usually experience delayed motor development and weakness in the arm, leg, trunk, throat, and face muscles.

The disorder is often clinically categorized into several groups, including mild (typical), intermediate, severe, and adult–onset; however, these distinctions are somewhat ambiguous, as the categories frequently overlap. Respiratory problems are a primary concern for people with all forms of NM, and though in some severe cases they may threaten life expectancy, aggressive and proactive care allows most individuals to survive and lead active lives.

Make A Difference

The story of inspiration behind A Foundation Building Strength and it's mission to encourage and support scientific research surrounding the rare disease, Nemaline Myopathy.

NM Newsletter

Click here to view the NM Newsletter archive.