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Raising Awareness

Supporting Patients

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BEAT MSA!
October 3, 2019

Beat MSA 2019 Poster

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Beat MSA Press Release Link

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Colleen. Chuck. Connie. Dave. Howard. Kerry. Mark. Paula.

This list of 8 names represents just a few of the multiple system atrophy (MSA) patients who have passed in the last three years. They were rare disease warriors; they fought against a relentless and aggressive disease nicknamed Parkinson's on steroids! until that disease did not allow them to fight any more. You're here–let's learn a bit about this neurodegenerative disease.

Multiple System Atrophy (MSA):
A progressive neurodegenerative disease that impacts the autonomic nervous system and cerebellum.
It is rare-only 4 in 100,000 adults are diagnosed, meaning 15,000–25,000 Americans suffer.
Average age of patients is 40-65 years. More males than females are diagnosed with the disease.

MSA can be diagnosed:
With only 75% accuracy, thus a probable diagnosis until it is confirmed following a brain autopsy. Within 3-5 years of onset of symptoms because of its rarity and its many and varied symptoms. Much earlier in the disease process if a current clinical trial confirms a possible diagnostic approach.

Patients diagnosed with probable MSA have:
A terminal disease-no known cause or cure. Average life span 7-10 years from onset of symptoms. Or 3 years after diagnosis. No disease-altering or life-saving treatments at this time.

The cost to care for an MSA patient:
Was found in a 2011 study to have average primary and secondary costs equate to $44,500. That is 36% of a typical family's annual income.

The Gettin' the Word Out! committee is dedicated to beating the Beast–another appropriate nickname for this devastating disease by 2029. This website is dedicated to informing, entertaining and advocating for all who are on the same journey as those above …

We support 100% the mission of the Multiple System Atrophy Coalition (www.multiplesystematrophy.org) We do it through two entertainment portals that represent the two favorite ways one patient in particular, Mary Colleen Kellerman, and her husband Larry passed their time. One was blues music and one was college basketball.

We highlight blues music in any form it might take. Local blues bands as well as regional acts are highlighted and Facebook Live (Doc Kellerman) streaming occurs at any event Doc attends. We have updated our Event Page with this year's event Crossroads Challenge "Beat MSA". Please check this information out and join us in Beat MSA!

We highlight college basketball with several teams having donated multiple times since the fundraisers began. We try to make the events fun-filled with education and entertainment–the two Es of any event–as the focus.

Mary Colleen Kellerman

Here is a picture of Colleen Queenie Kellerman seven months before she passed. That smile seldom left her face, even after receiving the diagnosis of MSA almost five years after she started having symptoms. Her symptoms?

  • Falling
  • Losing her balance
  • Bladder issues
  • Constipation
  • Lack of sexual stimulation

Each of these could be explained away until it was too late to do that any more and a new sheriff Movement Disorders Specialist Dr. Dyveke Pratt came to town. After almost a year of dogged detective work, she shared her clinical diagnosis on March 13, 2013. Colleen was 58 years old.

On February 4, 2016, she passed away in her living room–the disease having taken away every thing that makes one an adult human being. She'd love it if you want to learn more.

Do so and get involved today!

 
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