Eminnea Inc. is a non-profit organization formed in 2007 by Nathaniel and Diana Lee, the parents of three children, two with SMA.  Through years of dealing with medical facilities, insurance companies, durable medical equipment providers, home nursing agencies, and the like, Eminnea Inc. was formed to assist in navigating the often frustrating waters that come with SMA.  At Eminnea Inc. we are dedicated to serving the practical needs of families and organizations living to find a cure for SMA. 

What’s with the name?  “Eminnea” is a combination of two names special to us: Linnea and Emily – two of our beautiful children afflicted with SMA.  

What is SMA?

  • Spinal Muscular Atrophy is a degenerative problem that affects the motor nerves, resulting in muscle wasting and weakness.
  • Spinal muscular atrophy occurs in approximately one in 6,000 -10,000 live births and is the leading genetic cause of death in children under the age of 2.

What causes spinal muscular atrophy?

SMA is an autosomal recessive disease. This means that two abnormal copies of the gene, one inherited from each parent, are necessary to have the condition.  Boys and girls are affected with equal frequency.  A child who inherits only one abnormal gene copy is a carrier, and is not a risk to develop symptoms.

A gene called survival motor neuron (or SMN) is found to have an abnormal area (called a deletion) in over 95 percent of cases of SMA. Symptomatic individuals of all ages can be tested through DNA studies typically done from a blood sample.

When both parents are carriers, there is a one in four, or 25 percent, chance, with each pregnancy, to have a child with SMA. Carrier testing of parents can help determine the recurrence risk in a specific family.

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