The sound of respirators echoes off the laminate wood floor. There are 13 people this month, sitting in a half-circle at One Senior Place. Ten in folding chairs, three in wheelchairs.
Attendance varies at the meeting, a support group for caregivers and patients with amyotrophic lateral sclerosis, a disease that progressively paralyzes and kills.
It seems, as soon as a new patient joins, ALS takes another away.
In the front row, in a wheelchair, isJason Whitworth, a former teacher and cross country coach at West Shore Jr./Sr. High. In fall 2011, he was found to have ALS.
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The following year, the community rallied. More than 500 people came out to 'Jason's Run.' They raised money for medical bills, remodeling a bathroom and widening doorways in his home.
And around the same time, in a science classroom at West Shore, students and teacher Amy McCormick discussed another idea. A student-run science experiment that would raise awareness for - and help better the understanding of - the debilitating disease.
Now, the experiment is finished. The data has been collected and results analyzed. And three West Shore graduates - Robert Edmiston, Harshit Saini and Luke Redito - have come to share the results with the man who inspired it.
As they start the presentation, Whitworth's wife, Gayle, takes a tissue, reaches across his wheelchair and dabs tears from her husband's eyes.
The disease has taken a toll. Whitworth can no longer eat or breathe on his own. He relies on others for tasks that used to be routine.
But he continues to speak, through a computer that monitors the motion in his eyes.
Later, when asked about the experiment - a project conducted by astronauts and high school students, and that inspired college majors and career trajectories - Whitworth says:
'I am extremely humbled and proud that I have not lived in vain.'
Disease of immobility
ALS is a disease of immobility. The scientific explanation is that, in the body, enzymes stop breaking down glutamate, which builds up to toxic levels, causing neurons to die.
Patients lose control of their muscles. At first, it can be easily missed, showing up as clumsiness, drop foot or loss of balance. For most, it spreads quickly.
Whitworth's condition was diagnosed in the fall. By graduation that spring, he was using a wheelchair. He finished the school year, but it was a struggle.
Students watched as he grew worse. 'It was so fast, and it was so devastating,' McCormick said.
The science project gave students an outlet for their grief, focusing them on the possibilities of medical research. Plus, it would raise awareness for ALS.
In the experiment, students modeled a healthy glutamate breakdown. They used papaya extract, which represents the enzyme, and gelatin, which represents the glutamate.
After three days, vitamin C was introduced to stop the reaction, giving students time to analyze the results.
They were curious how many gelatin proteins would be left after the reaction, both at West Shore and, thanks to funding from the Teachers in Space program, low Earth orbit.
They wondered: Would the cellular breakdown occur more quickly here, or in space?
Spaceflight experiment
In fall 2012, before McCormick applied for the program, she questioned students. What should we research? What do you feel passionate about?
The answer came easily. It needs to be about ALS. About Mr. Whitworth.
The experiment they designed may not lead to a cure. But it does further understanding and raises awareness for the disease. And, most important, it honors a beloved teacher and coach.
So they went to work, eventually beating out more than 1,200 proposalsfrom across the United States and Canada for a research spot on the International Space Station.
It was one of 17 projects selected by the Student Spaceflight Experiments Program. It's a partnership between the National Center for Earth and Space Education and NanoRacks, a company that works with NASA to use the ISS as a national laboratory.
The space portion of the experiment was ferried to the International Space Station aboard an Orbital Sciences Corp.'s Antares rocket in January. And in early March, the experiment ran for three days, the timing coordinated between the two locations.
In McCormick's classroom at West Shore, students released a clamp and started the reaction. Whitworth had returned for the occasion and watched as students shook the vial, mixing the papaya and gelatin.
Onboard the ISS, astronauts Mike Hopkins and Koichi Wakata followed the same procedure, starting and stopping the reaction in space.
'Tell Jason we said hello from the International Space Station,' astronaut Rick Mastracchio posted on Facebook.
By way of Russian spacecraft and overnight mail, the experiment returned to West Shore a few weeks later. In a biology lab, students unwrapped the vial carefully, aware they were touching an item recently in space.
They studied the vials, marking their observations in pencil. They sniffed the contents and noted the color. Like burned pumpkin, suggested Genna Owen, a painter. Or crimson red.
Using a spectrophotometer, students measured how much light is absorbed by the mixture, a way of determining how much of the gelatin protein was left.
What they found was significant. The ISS sample was 40 percent more efficient at breaking down the protein than the samples done on Earth.
In their research, students had thought that might be the case: That breakdown would occur more easily in space.
'I would like to know why,' said Carissa Sage, a recent graduate.
Continuing research
In the sparsely furnished room at One Senior Place, the three West Shore graduates flip through pictures of the past two years, sharing their data and the experiment's results.
Then, they mention another study - the possibility of digging deeper into ALS and current medical research.
McCormick wants to cultivate her students' passion. She's seeking funding to start a new project.
As the mention of future goals, however, ALS patients and their loved ones grow quiet. ALS is a disease that spreads quickly, typically within two to five years.
It leaves no survivors.
The presentation done, Whitworth is the first to speak. 'They spelled my name correctly,' he says, cutting the tension, soliciting smiles and a few chuckles.
'Thanks, guys,' he says, prompting applause.
This summer, students will present their research at a conference in Washington, D.C. And at college in the fall, at least three students will tailor their studies, pursuing a career in medical research.
For Saini, now a student at the University of Florida, it's the impact he saw the experiment have, the smiles it brought the Whitworth family and others with ALS.
'If they know the research is going on,' he said, 'even if there is no cure right now, just knowing that someone is trying to help them. It takes a burden off their shoulders.'
And in its own way, it has. After the projector is turned off and the folding chairs stacked away, Whitworth's wife and mother-in-law speak of the project.
How much it has meant to their family, that Whitworth could inspire so many.
Whitworth continues to think of the students as well.
When asked what he wants to say to them, what he wants students to remember, he pauses for a moment.
Then, using the movement of his eyes, he types out 10 words.
'Don't take life so seriously. Enjoy life, and enjoy people.'
Ryan is at 321-242-3664 or mryan@floridatoday.com. Follow her on Twitter @Mackenzie_Ryan.
Science education features online
In an occasional series, FLORIDA TODAY is featuring stories about science education.
Education reporter Mackenzie Ryan followed three student clubs with unique partnerships with science education groups and NASA.
A television documentary about the students will air this fall. For past stories, go to http://ift.tt/1nRx0Xp.
Read or Share this story: http://on.flatoday.com/1gRz8hc
Entities 0 Name: Whitworth Count: 12 1 Name: West Shore Count: 6 2 Name: McCormick Count: 4 3 Name: ISS Count: 2 4 Name: NASA Count: 2 5 Name: Earth Count: 2 6 Name: Canada Count: 1 7 Name: University of Florida Count: 1 8 Name: Saini Count: 1 9 Name: FLORIDA Count: 1 10 Name: Koichi Wakata Count: 1 11 Name: Robert Edmiston Count: 1 12 Name: Luke Redito Count: 1 13 Name: Orbital Sciences Corp. Count: 1 14 Name: West Shore Jr. Count: 1 15 Name: Amy McCormick Count: 1 16 Name: Antares Count: 1 17 Name: Russian Count: 1 18 Name: Carissa Sage Count: 1 19 Name: NanoRacks Count: 1 20 Name: D.C. Count: 1 21 Name: Rick Mastracchio Count: 1 22 Name: United States Count: 1 23 Name: National Center for Earth and Space Education Count: 1 24 Name: Genna Owen Count: 1 25 Name: Mike Hopkins Count: 1 26 Name: Jason Count: 1 27 Name: Gayle Count: 1 28 Name: Washington Count: 1 29 Name: Mackenzie Ryan Count: 1 30 Name: Harshit Saini Count: 1 Related 0 Url: http://ift.tt/1lCmMbR Title: Who Gets to Graduate? Description: For as long as she could remember, Vanessa Brewer had her mind set on going to college. The image of herself as a college student appealed to her - independent, intelligent, a young woman full of potential - but it was more than that; it was a chance to rewrite the ending to a family story that went off track 18 years earlier, when Vanessa's mother, then a high-achieving high-school senior in a small town in Arkansas, became pregnant with Vanessa.
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