Last week I went back to high school.

My friend and co-worker, Paola Vermeer, a scientist studying head and neck cancer at Sanford Research, was presenting to junior high and high school students during their school assembly. This was not just any presentation.

Paola, or Pay, was talking about a rare disease, called Multiple System Atrophy.

Pay’s mother recently passed away from Multiple System Atrophy, a progressive, neurodegenerative disease commonly referred to as MSA that she had been battling for 9 years. This was a very painful experience for their family as Pay’s mother was healthy at age sixty. Her health went into significant decline in the last 2 years. Pay created a heartfelt YouTube Video (see below) that outlined this decline and the challenges they faced so she could share the experience with others who may be struggling to support a loved one with MSA.

https://www.youtube.com/watch?v=t-Db2cMgvSs?rel=0

Pay is brilliant. With a PhD in developmental neurobiology, she is an expert in her area of research, which happens to be head and neck cancers. But what was absolutely amazing is how she intrigued and mobilized over 400 junior high and high school kids at 8:00 am last Thursday morning by talking about a complex neurological disease affecting only 50,000 people in the country.

Pay would say it was the candy or treats she handed to students that incentivized students to come down from their perches in the bleachers to participate in an activity but I have to disagree. It was a series of well thought out events that made it a successful learning experience for these students.

Pay is just one person with limited time. In the past two months she has made time to create a local chapter for MSA, produce a short film/PSA on MSA and submit it to the American Academy of Neurology’s NEURO Film Fest, and invited Dr. David Robertson, a leading MSA researcher to Sioux Falls for the Sanford Rare Disease Symposium to present to healthcare professionals and the community about MSA.

Pay is a friend and inspiration to me as well as to the many individuals of whom she interacts with.  I’m honored to be her friend.  Thank you Pay.

Liz Donohue, Coordination of Rare Diseases at Sanford (CoRDS)
Sanford Children’s Health Research Center 

 

Rare Disease activities at Sanford Research during the month of February:

February 6 – Executive Proclamation of 2/29/2012 as Rare Disease Day City Hall in Sioux Falls, South Dakota.

February 11 – Radio Show on KSOO’s A Better You

February  13 – Radio Show on KSOO’s Viewpoint University

February 17- Receipt of Executive Proclamation of 2/29/2012 as Rare Disease Day in the State of South Dakota

February 25 – 2nd Annual Sanford Rare Disease Symposium at Sanford Research & Life Science Discovery Program (LSDP) in the Sanford PROMISE Lab

February 29 – Global and National Rare Disease Day. Join @SanfordCoRDS for a Tweet Chat at Noon CST

 

1 thought on “Paola’s Life with Multiple System Atrophy (MSA)”

  1. Brenda cloar says:

    My husband has this terrible disease!! It is so sad to see him fading away in front of my eyes!! I can’t stop it!! Only be a part of it!! I have to make it bearable for him!!!

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