Hustling for Hunger

Posted by on April 23rd, 2013

Smiles

By John Keenan, UNMC Today editor

I used to race for fun, back when I was young and (relatively)  fast.

These days, however, I run road races much less frequently, and prefer to race (if you can even call it “racing” anymore”) for a reason.

On April 19, for example, I took part in UNMC’s Hustle for Hunger, a three-mile run/walk designed to collect donations of canned and boxed foods for the Food Bank. I was looking for a short race to run near the end of April, and as a newcomer to UNMC, I figured a nice, noncompetitive race might get me some exercise, help me support a worthy cause, and perhaps allow me to meet other runners who work or go to school at UNMC.

After two days of rain and snow, the early spring crispness of Friday afternoon seemed perfect running weather, not only to me but to the 50 or so people who turned out to run or walk the course. (By the way, it’s not too late to help out by dropping off a donation at one of these locations.)

See event slide show here.

I’m certainly not alone in running  for a cause – and the Food Bank of the Heartland isn’t the only organization that allows you to flex both your fast-twitch and philanthropic muscles. This coming Saturday alone, a fitness junkie could run a 5K for Fertility or a 5K to support autism awareness. A bicyclist could Bike for Sight (in another UNMC-related fitness event). You could knock out a quick mile to “Keep Kids Alive – Drive 25.” Or walk the Nebraska Lymphomathon. And that doesn’t include events on the surrounding weekends, races that support Siena/Francis House or help provide shoes for needy children.

I used to leave races feeling bad about missing an age-group award. When I finish the autism run this weekend, I suspect I’ll leave feeling bad about not making my fund-raising numbers. As a fund-raiser, the best thing you can say about me is I’m a pretty good runner – my “Personal Fundraising Page” for the autism run has netted $40 (including $20 that I kicked in myself). But if I’m going to put up $30 to $40 to run a race, I like the idea that there’s more than a T-shirt as a payoff. And – counting what it cost me to register for this race – I figure at least I’ve given a little money to a good cause.

The Hustle for Hunger didn’t even cost that – the can of peaches I donated for my entry fee ran me a couple of bucks. But the payoff is much bigger than the food donated at one event, according to Brian Barks of the Food Bank of the Heartland.

“Food drives are mini PR campaigns,” Barks said. “While hundreds and hundreds of food drives are done on our behalf, product received from those food drives comprise less than 5 percent of our inventory.  So generating awareness through food drives has become a critical component.”

bananasYou had to think some awareness was generated Friday, with the bright yellow Hustle for Hunger shirts increasing visibility as runners and walkers went from the start near the ice rink out onto Dewey, up 42nd Street to Douglas, turning west then south again to climb the hill near the Munroe-Meyer Institute before circling past The Nebraska Medical Center’s main entrance and back toward the start. (Props to Munroe-Meyer, by the way – the team of walkers and runners from MMI bought boxloads of food items with them.)

My running is not always about philanthropy. I’ll be racing a Half-Ironman triathlon in June for no other purpose than to prove I can do it and feed my enormous ego. Between registration, hotel and various other costs, the amount I’m spending there will dwarf the proceeds for the autism run or the cost of the few food items I donated to Hustle for Hunger.

But going forward, I’d like to look for events – like the Hustle for Hunger – that will have an effect to go with all my effort. I may be older and slower, but I’d like to think that some of the races I run these days will have a bigger impact than simply causing me knee problems and shin splints.

run

PHun at the PHeud

Posted by on April 10th, 2013

Mojow0410There was no kissing, but the spirit of Richard Dawson reigned at the second annual “PHamily PHeud” competition, held April 5 to close a week of public health-themed events.

Three teams of five – Team ROI, Team Conned and Team Mojo – competed in the event, in which the contestants were asked to match the answers to a 2012 survey on public health questions.

The kicker? The survey was taken not only by College of Public Health faculty, students and employees, but also by the general public. So the question, “Name something everyone should have in their disaster preparedness kit,” in addition to COPH-approved responses such as “water,” might yield an answer like “a flask of whiskey” or “a copy of King Lear.” (Tell me an English major didn’t give that response.)

“It’s more about predicting the things people might come up with, not so much the ‘right’ answers,” said Claudine McCarthy, president of the COPH Student Association. McCarthy said the “PHeud” event was such a hit in 2012 that the students were excited to bring it back.

Shawn Gibbs, Ph.D., associate dean of student affairs for COPH, acted as the emcee for the event.

Questions ran the public health gamut, from “Name an organization that deals in public health” to “Name a place in Omaha where people can be tested for sexually transmitted infections.” One team stole a round in the “Name a way to prevent infectious disease.” category by having the only contestant bold enough to answer “Wear a condom.”

ROI2w

The mood in the room was high-spirited, with one team tossing pennies when it stole a category, and cries of approval and disappointment as survey answers were revealed.

The event was not without controversy. A too quick response from MPH student Jessica Chavez Thompson led to the adoption of “the Jessica Rule”– put simply, no answering the question before the question is completely asked.

Despite the rule, Chavez Thompson and her compatriots on Team Mojo – Mohammad Siahpush, Ph.D., Molly McCarthy, Theresa Tonozzi and Andrew Braith – eventually secured the victory.

Janelle Jacobson, a fourth-year Ph.D. student, was the leader of Team Conned, which lost in the final round to Team Mojo. Both she and Chavez Thompson agreed that the most surprising things about the survey answers were what was not included.

“It just goes to show that when you’re in this world of public health, you can forget … there are things we’re familiar with that maybe the general public isn’t,” Chavez said.

Martin said the student association has been pleased with the level of interest in its Public Health Week events.

“The turnout was very good, not only when we did things just for the college, but when we reached out to the wider community, as well,” Martin said.

And the PHeud was the perfect way to round out the week, Chavez Thompson added.

“I think it’s a very public healthy thing for us to do,” she said. “We want people to have happy lives, to do fun things with their families and friends, to do them together.”

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Tammy and Olivia

Posted by on March 25th, 2013

Tammy Kielian, Ph.D., turned to the computer in her office and pulled up a picture of a young girl with glasses, with a sunbeam of a smile, the kind that reaches into your chest. It’s pixelized sunshine; a picture of childhood joy.

“This is Olivia,” Dr. Kielian said.

Dr. Kielian, a professor of pathology and microbiology in the College of Medicine, beamed a little herself.

“She’s a pistol,” Dr. Kielian said, then stopped, and looked at the picture again.

This is why she works now. This is why she does what she does.

kielian and olivia

Olivia, the go-getter, the girl with the indefatigable smile, is Dr. Kielian’s 9-year-old niece; her sister’s youngest kid.

A while ago they noticed Olivia’s vision was getting worse. She went through two pairs of glasses before her family could blink.

A second-opinion suggested it might be the first sign of something else, and it was. Genetic testing confirmed Olivia has juvenile neuronal ceroid lipofuscinosis, better known as Juvenile Batten disease. It’s inherited, autosomal recessive, neurodegenerative. That was a little over a year ago.

Juvenile Batten occurs in about one in 100,000 live births, Dr. Kielian said. That’s very rare — but it still adds up to plenty of kids. That’s a lot of families that will mark time in two ways — from the day before they heard the diagnosis, and the day after.

“It changes everything,” Dr. Kielian said.

Look at that picture again.

Basically: Mutation of the gene CLN3 results in lysosomal storage problems. An abnormal amount of protein and lipids become trapped inside the cells. Like when the garbage disposal breaks, the body can’t clean the clog.

As the material accumulates in brain cells, neurons in the central nervous system begin to die. The first symptom is loss of vision. Then seizures. Then cognitive loss, then motor loss. Then premature death.

A lot of kids who have it are gone by their late teens.

For the past dozen years or so, it turns out, Dr. Kielian’s lab has investigated immune responses in the brain. She had an idea that maybe this had something to do with what her niece was going through; maybe her research might have an impact. She had to try.

David Pearce, Ph.D., an expert in the field, has published 60 papers on Batten. Dr. Kielian emailed Dr. Pearce, the director of the Sanford Children’s Health Research Center in Sioux Falls, S.D., and proposed a collaboration. Almost immediately, her computer dinged with his reply. Then her phone rang, too.

Dr. Pearce was excited. In this much unexplored field, her approach was novel.

Call it fate, coincidence — whatever.

Her research expertise was in line to make an impact on this disease.

Soon, Dr. Pearce’s mouse models — mice with mutated CLN3 genes, just like in these kids — were headed to UNMC.

And in these mice, Dr. Kielian found that the two types of brain cells she studies — the microglia, the brain’s first line of defense, and the astrocyte, which supports neuron viability — are activating early. Very early.

“We believe that when these cells turn on early, they inadvertently contribute to an environment that, down the road, leads to neuron death,” Dr. Kielian said.

Scientists see it all the time: sometimes our antibodies work against us.

“An overactive immune system may be contributing to this disease’s pathogenicity,” Dr. Pearce said.

Today, one of the goals in the study of Juvenile Batten is to slow down this process to give these kids more years and better ones.

Dr. Kielian hopes — along with other investigators grateful for her fresh perspective — that her work will inspire other researchers.

Dr. Kielian has been able to come up with some new ideas that seasoned Batten researchers have found promising.

Dr. Kielian has been able to come up with some new ideas that seasoned Batten researchers have found promising.

Meanwhile, Olivia is doing it all, and with abandon. She’s in gymnastics and Girl Scouts. She’s learning braille. Her mom has her in everything, has her breathing life in with great gasping gulps — like Olivia ever had a problem with that.

But there are good days, and there are bad.

Kids who have Juvenile Batten disease can sometimes rage against the dying of the light. Or they can seem detached.

This awful thing steals them, neuron by neuron. Sometimes parents don’t even tell their kids they have the disease. Sometimes that’s for the best.

Olivia understands that someday she may not see. Right now, that’s what she knows.

Dr. Kielian asked her sister and her husband if there was anything they didn’t want her to talk about for this story. No, they said. Say everything.

“Seizures will initially be controlled by medication,” Dr. Kielian said. “Eventually they won’t.”

Now, a catch in her voice: “Cognitive loss will occur.”

Dr. Kielian soldiered on: “Speech will go. She won’t really be able to communicate anymore. She’ll be in a wheelchair. After that, bedridden. And then the end.”

Silence.

One second. Two …

“Strangely enough, it doesn’t seem real right now,” Dr. Kielian said.

No, of course it doesn’t. Right now, she’s doing something about it. Right now, she’s getting funding, and readying proposals for more. Right now, she’s making presentations at national conferences and investigators are praising her new ideas.

Right now, her sister is seeing this — her sister is going to conferences, too, meeting the scientists who are so hard at work.

Right now, their fight has only just begun.

But this is different. This isn’t in theory.

This isn’t your typical investigation. This isn’t abstract.

They are on the clock.

She nodded at the assessment, repeated it with a whisper: “We’re on the clock.”

But science doesn’t work like that. Research moves at its own pace; and Dr. Kielian has to detach herself — as a professional and a scientist. Her lab knows this story, of course. And she might mention her niece in an opening sentence at a conference. But, there is no picture of Olivia and her sunbeam smile in the lab or at presentations. There is no impassioned plea. There can’t be.

Research doesn’t work like that.

Instead, all she can do is push her sadness into a box and use it as fuel. And she does. And she will. This is what she’ll work on, forever.

“And I will always do it for her,” she said. Always, for Olivia. For that go-getter girl with the smile you can feel in your chest.

“Always,” Dr. Kielian said. “That will never change.”