understanding multiple system atrophy

Multiple system atrophy (or MSA), is a rare, progressive neurologic disease, similar to Parkinson's in that it causes tremor, walking and speech disorders. A protein called alpha-synuclein also builds up in the brains of both MSA and Parkinson's patients.  But MSA is different in where those proteins accumulate, and in the fact that it is progressive and always deadly.  Along with the tremor, MSA can affect the cerebellum, which is the part of your brain that controls balance and coordination.  And a third feature of MSA is what is called "autonomic" failure, which is basically failure of the automatic parts of the nervous system: blood pressure control, breathing, urinary control, and so on.  The cause of MSA remains unknown, though theories abound.  None have been fully accepted as truth.  As a result, there is no cure.  It affects 5 out of 100,000 people in the world, and only about 50,000 people in the United States.  Read my first post in the "daughter" section for more info too!

Recent news aboout MSA:

Robin Williams wife has recently come out with more support for the theory that the actor died from a disease closely related to MSA called Lewy Body Dementia.  His autopsy showed diffuse Lewy Bodies, which are made of alpha synclein.  These bodies are also present in Parkinson's but generally are more restricted in their location.

more about MSA:

Source: gettyimages

Source: gettyimages

Kerry Simon, Rock & Roll chef, died with MSA on September 11, 2015.

news about possible causes for MSA

  • Theories include that it is caused by a prion
  • NPR podcast and transcript, August 2015.  The speakers discuss how if MSA is caused by a prion, Parkinson's and Alzheimer's might be too.
  • NBC News explores some of the possible implications of the study. 

organizations supporting patients and families with MSA

medical literature

β€œTo have an article on Multiple System Atrophy appear in the most widely read medical journal in the world is a culmination of many years of hard work... to bring awareness to this disease that has no treatment and is always fatal...
The level exposure for this rare disease among the medical community is unprecedented.”
— Pam Bower, MSA Coalition Board Member

show your support!

  • October 3 is MSA Day!  We missed it this year, but we'll be ready for it in 2016!
  • March is MSA Awareness Month
  • Donate to the MSA Coalition
  • Host the MSA Shoe!  The MSA Shoe is a charitable organization that features an actual shoe that has traveled the world to raise awareness and money for MSA.  Carrot Top has met the MSA Shoe, maybe you should too!