Racing to a Cure
I got an email recently from Mark Freed ’97, an acquaintance from my undergraduate days, that felt important to share here:
“My wife and I have twin children named Maxwell and Riley. In 2018, my son was diagnosed with a rare neurological disease known as SLC6A1. The disease is too rare for a formal name and is known only by its genetic location in the brain. Doctors told us we were 1 of 30 in the world and nothing could be done and we chose not to accept that answer. My wife and I interviewed 140 scientists over the course of three months and found the disease can be cured via gene replacement therapy. We are in the midst of raising a large sum of money to advance the clinical trial. We hosted the first symposium on the disease in November and found that the disease is dramatically under-diagnosed because it’s newly discovered. Our patient population is actually in the thousands . . . The quest to save our son has transcended our family and we have the opportunity to impact a multitude.”
Mark and his wife, Amber, are leading an effort to save Maxwell and other children affected by SLC6A1, with a goal of raising $1,000,000 to advance a gene replacement therapy clinical trial. It’s a daunting task, but the impact literally could be life-saving. They’re concentrating their efforts on a GoFundMe, and they’ve also launched a website with details on the disease, stories of Maxwell and other children afflicted, and updates on the research.
Ryan Jones, editor
Inside our May/June Issue
Just in time for pool and beach season, it’s our collection of must-read books, chosen by faculty from across Penn State. Whether you’re looking for a mystery to solve, some history to brush up on, or just an easy page-turner, we’ve got you covered. The list begins on p. 34.
You’ll also get a glimpse of the innovative film project conceived by professor Andrew Belser, who pairs off young adults with aging seniors to challenge generational boundaries. The story of FaceAge begins on p. 44. And finally, Penn State DuBois geoscientist Neyda Abreu talks about efforts to mine cosmic metals, and the implications for life on Earth. Her interview begins on p. 28.
Plus: Meet the World Campus student and gaming wiz who plays for the New York Knicks in the NBA2K League, part of the fast-growing world of esports; learn about Good Day Cafe, a new State College establishment that creates much-needed job opportunities for local local residents with Down syndrome, autism, or mental illness; and enjoy an essay from a new alum who found himself asking to “un” graduate. It’s all in our May/June issue, arriving in mailboxes this week.
—B.J. Reyes, associate editor
In Sickness and In Health
Mike Petrash ’73 is a regular at the Barnes & Noble in Center Valley, Pa. He’s at the store every day, and always orders a Frappuccino at the in-store café. Everyone there knows him.
We heard about Mike’s routine from his friend Dan Wallace ’75, who wrote recently to share the story of a very cool Penn State connection — one that was written up in Barnes & Noble’s own in-house publication. One January day, Wallace and Petrash’s wife brightened up Mike’s bookstore routine by asking his closest Penn State friends to visit with him at the store. Petrash, Wallace, Greg Pierce ’74, ’76g, Tom Macenka ’75, and John Slaby ’75 met in college and have been firm friends for nearly five decades since. Their bond has always been strong, but it became even stronger after Petrash was diagnosed with Parkinson’s, and the group decided to meet with him regularly at the bookstore.
“They were a great group of guys, full of energy and lots of laughs. They even joked about receiving a senior discount,” says Colleen Gorsky ’03, the store’s community development manager. “As a fellow Penn State alum, I was thrilled to be able to encounter this wonderful reunion and be able to capture their experience.” We’re glad we could share it a little more widely here.
Savita Iyer, senior editor
Inside our March/April Issue
Faithful readers of this blog already know about Derrick Campana ’01, so you’ll be pleased to see that he not only made it into the magazine, but snagged our cover—with a little help from Petey. Campana has carved out a niche for himself in the field of orthotics for animals—mostly pets, but some wild animals, too. Learn about his story and how a chance meeting led to a brand-new career field.
Also in this issue: One of the greatest sportsmen of his day, Steve Hamas has been relegated largely to Penn State boxing lore. Learn about the versatile athlete who played in the nascent NFL and beat former world heavyweight champion Max Schmeling in the ring. We also feature poems and photos from Pennsylvania’s fracking fields, as documented by two Penn State professors who recently published the book Shale Play: Poems and Photographs from the Fracking Fields.
Also inside: Meet Rhea Sullivan, a former THON fundraiser-turned-medical student who’s hoping to make a breakthrough in the fight against cancer; catch up with swimmer Nikolette Nolte, whose own battle against cancer has inspired the social media hashtag #NikiStrong; find out former hoops star John Amaechi’s favorite spot on campus; and discover the Penn State connection to the Philadelphia Flyers’ new mascot, Gritty.
All that and more in our March/April issue.
——
B.J. Reyes, associate editor
Derrick Campana: A Dog’s Best Friend
Derrick Campana shaping a leg mold at his Sterling, Va., facility.
I spent yesterday in Sterling, Va., not far from Dulles airport, immersed in the world of Derrick Campana, a 2001 Penn State kinesiology grad who has an unusual occupation: He makes braces and prosthetics for animals.
We first heard about Campana when a reader sent us a newspaper clipping about his work some months back. We did a little Googling, wondered, How have we not heard about this guy before?, and knew right away it would be a great story for the Penn Stater. The only question was deciding on a writer to assign it to. Then on Oct. 1 I stepped out of the editor role and Ryan Jones stepped in, and I became “editor-at-large,” with an assortment of responsibilities that includes finding and writing stories for the magazine. So I volunteered myself for the Derrick Campana piece, Ryan agreed, and I emailed Campana to schedule a visit to his company, Animal OrthoCare.
Campana is one of only a handful of people in the world who do what he does—and in fact he does his work all over the world. Animal Planet devoted a one-hour documentary last June to his efforts to fit a leg brace to a six-ton elephant in Botswana named Jabu, and when I visited him yesterday, he was freshly back from England, where he constructed prosthetic front legs for a cow named Nipper Jackson at the Hugletts Wood Farm Animal Sanctuary. He has also developed braces and prosthetics for goats, camels, turtles, and birds.
But the majority of his work is with pets—dogs, mostly—and during yesterday’s visit I had a chance to meet three different people who had brought their dogs to Campana for help with arthritis and other problems. I also was able to watch Campana and his staff in their workshop, a large, warehouse-like space where they work with molds of animals’ legs to create the custom-fitted devices. And I chatted with Campana about his undergraduate experience at Penn State, his unusual career path, and the satisfaction he gets from helping alleviate a pet’s pain, save it from costly surgery, and in some cases save its life.
Below are a few photos from yesterday’s visit. Click on any of them to see a larger version. First, here’s one of the workspace, complete with Campana’s dog, Henry:
Next, Campana and an assistant test the fit of a leg brace on an arthritic 10-year-old boxer named Frank.
Frank may not look too pleased in the photo above, but he was plenty happy to give Campana some kisses afterward:
And here’s one of several walls of the office space at Animal OrthoCare that have photos of the animals Campana has helped:
Look for a story about Derrick Campana in the magazine in an upcoming issue.
Tina Hay, editor-at-large
Every Day a Struggle, Every Day A Gift
Our November/December 2018 Cover Story
Caring for twin sons with autism has dominated Curt and Ana Warner’s lives for two decades. In a “blisteringly honest” new book, they tell their family’s story in a way that they hope will help other families—and, in the telling, themselves.
By Lori Shontz ’91 Lib, ’13 MEd Edu WC // Photographs by Michael Lewis
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When the invitation appeared in his inbox, Curt Warner ignored it. The National Autism Conference was holding its 2013 annual event at University Park, and the organizers wanted Warner ’83 Lib to speak about his family. He loved his boys so much—but how could he talk about them? For a lot of reasons, that just wasn’t the kind of thing Warner or his wife, Ana, had ever done.
At first, especially, they didn’t know what to say. As toddlers, their twin sons Austin and Christian were nonverbal and energetic and aggressive, far more difficult to handle than their older son, Jonathan. Doctors couldn’t explain why the boys would eat books or string or fabric, or why they’d cry and hit and slap and bite. Shoppers and passersby were judgmental when the Warners took the boys out and a meltdown ensued—whether through words or nasty looks, it was clear they blamed bad parenting.
The boys weren’t diagnosed as severely autistic until they were 5. The Warners then tried a variety of therapies and treatments; eventually Ana began cooking every meal they consumed—gluten-free, dairy-free, no preservatives, organic everything—because it consistently seemed to help the boys’ behavior. Still, they were a challenge. At one point, Curt and Ana had to sleep in shifts to monitor the boys, and for a while Ana homeschooled them.
As a three-time Pro Bowl running back with the Seattle Seahawks from 1983–89, Curt would have been a regular attendee at team events after retirement. But he rarely showed. He couldn’t. He didn’t leave his family except to work at the car dealership he owned in the suburbs of Portland, Ore.
When the boys’ behavior calmed after puberty, Curt didn’t want to relive what they’d been through. It’s never been a 24/7 job to take care of the boys. Says Curt: “It’s 25/7.” He and Ana had automatic locks and alarms installed on every door and window to make sure the boys didn’t leave, because they would have no idea how to get back. Curt learned to hang drywall, because the twins so frequently kicked and punched holes in walls. He rushed home in a panic one day when Austin, then 12, thought he was Pinocchio inside the whale, and he had to light a fire to get out—and he somehow found matches and ended up burning the house down. Everyone got out safe, but the Warners lost everything.
And so, when that invitation hit his inbox back in 2013, Curt at first didn’t respond. He couldn’t envision speaking about those days; he feared doing so would result in one of two things. First, that perhaps people would think he was complaining; he couldn’t abide that. He loves his boys, and in many ways, he believes he has been blessed. And second, the biggie: Curt didn’t think he could make it through a talk without being overcome by emotion. He didn’t want to cry. (more…)
