Explore favorite summer flavors at 30hop Pohlad Custom Homes provides luxury villa living
CO-FOUNDERS
TONY GOINS AND PAUL WEST
SHARE THE BUZZ ABOUT
APIARY SOCIAL CLUB
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LETTER from the EDITOR
Thelate Fred Rogers was once quoted as saying, “The connections we make in the course of a life, maybe that’s what heaven is.” Our community is full of ways to connect with each other, and the businesses featured in this issue excel at creating those opportunities.
You may have heard the buzz about Omaha’s newest social club, Apiary. Co-founders Tony Goins and Paul West have created a community built for conversation and connection in the new Heartland Preserve development. Want to check it out? Join us on June 12th from 4-7pm for an Inside Edge event hosted at Apiary. Simply scan the QR code on this page to register.
Food and fellowship go hand-in-hand, and 30hop (located in the same building as Apiary) provides the perfect venue for warm food and cold beverages. The extensive menu of handhelds, bowls, noodles, and salads combined with large areas of indoor and patio seating make for an accessible summer outing. 30hop will also be providing light appetizers at the June Inside Edge event at Apiary— another reason to stop by.
June is also special because it’s Batten disease awareness month. Our Youth section features an extraordinary family, the Thoenes, whose son Oliver was diagnosed with the rare disease at age three and have been on a mission to help raise funds and awareness for the Batten Disease Support and Research Association. Fundraising events will include the first Ollie’s Purpose Golf Tournament in Lincoln, Nebraska, on June 9th, and a 5K walk on July 7th in Eagle, Nebraska. Help support this important cause.
There’s even more to discover in this issue, including the featured concoction—a refreshing cucumber cocktail from The Cottonwood Room—local events in the Worth the Haul section, stunning images of the new luxury villas by Pohlad Custom Homes, and the Varsity Corner two-sport athlete, Tyler Albert. We also have updates in the Spotlight sections from two of our partners—Blue
Cross and Blue Shield of Nebraska and Business Ethics Alliance. Enjoy the start to your summer and connect with someone new to create a little slice of heaven.
Carole@EdgeMagazine.com PO Box 620 Elkhorn, NE 68022
DOWNSIZING THE ART OF ELEGANT
the front door opens to stillness. Outside, a creek murmurs softly behind a screen of giant maple trees. Inside, late afternoon sun stretches across maple floors, warm as honey, rising to vaulted ceilings where exposed beams lend graceful definition. The space feels refined, intentional, and distinctly elevated. There’s no clutter, no filler, just smart design that reflects how people actually live. That’s exactly what Richie and Julie Pohlad with Pohlad Custom Homes had in mind when they built South Stream Residences: a pocket of calm in the middle of Omaha’s fast-growing western fringes.
SOUTH STREAM RESIDENCES VILLA BY POHLAD CUSTOM HOMES
STORY BY BETHANY WALES
PHOTOS BY AMOURA PRODUCTIONS
Not far from the city’s pulse off 204th & Q Streets, the quiet is enough to make you forget you’re just minutes away from the best the area has to offer. Step outside the cul-de-sac and you’ll find restaurants, bars, walking trails, a movie theater, and the Nebraska Crossing Outlet Mall all nearby. It’s a rare kind of place where you can enjoy a wine bar within five minutes yet feel sheltered from the urban hustle and bustle. “There’s a lot going on just beyond the trees,” Julie Pohlad said. “But here, it’s quiet. That contrast is part of the appeal.”
Only 20 homes make up the neighborhood, set back from 204th Street in a low-profile loop of prairie-style architecture and native landscaping. They are designed for a specific kind of
homeowner—those who’ve done the big house, raised families, hosted holidays, and are ready for something different, not necessarily downsize, but right-size. These homes aren’t condos or minimalist cubes. They range from 2,600 to 3,000 square feet, with open floor plans, finished basements, and just enough separation to give guests and grandkids their own spaces.
“There’s a lot out there for young families,” Richie Pohlad said. “But we keep hearing from people who want something more tailored to their next chapter.” Think fewer stairs, less maintenance, and more thoughtful flow as well as space for the kids to visit and lock-and-leave peace of mind for winter escapes. Every lot backs onto green space, protected land that ensures no
INVITING LIVING ROOM
SOUTH STREAM RESIDENCES
WARM, WELCOMING DECOR
rear neighbors or fences, just interrupted views. Maintenance such as mowing and snow removal is managed, so seasonal transitions are seamless.
South Stream homes lean into modern prairie style: pitched roofs, clean lines, and no unnecessary fuss. But it’s the interiors that truly stand out—crafted with the kind of quality you’d expect in a sprawling estate, distilled into a more focused, liveable footprint. Think maple floors underfoot, hand-trowelled plaster fireplaces, matte black fixtures, and tailored lighting that sets the mood without demanding attention. Kitchens are built for both daily rhythm and spontaneous gatherings, with oversized islands, walk-in pantries, and high-performance appliances. Everything feels solid, nothing excessive. The details do
their job without fanfare.
“It’s not about being trendy,” Richie Pohlad said. “It’s about building something timeless with just a little personality.” Buyers also have the flexibility to work directly with the Pohlads to tailor finishes, layouts, and special features. It’s a collaborative approach that reflects the understanding that lifestyle isn’t onesize-fits-all.
Team Pohlad, which includes Richie’s brother Jay Pohlad along with real estate agent Sara Pohlad, said they wanted the living spaces to feel effortlessly connected, without any wasted space. They designed the homes to be light-filled and spacious, with no dead zones or rooms that go unused. “Every part of the house should feel purposeful, ”Julie Pohlad added. “We wanted the homes to feel
“They
Kathy, Daughter of CountryHouse resident
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“Kindness and respect are two words that come to my mind when I think of the caregivers at CountryHouse.”
Discover care exclusively designed for those with Alzheimer’s or other types of dementia.
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A SYMPHONY OF LUXURY
An impeccably orchestrated, upscale lifestyle is waiting for you at Symphony Pointe in
Experience resort-style amenities you’ll love, including an indoor pool, pickleball courts, restaurantstyle dining, and a beautiful space to enjoy happy hour cocktails. Here, you’ll age harmoniously, with Independent Living, Assisted Living, and Memory Care all in one place. Allow us to conduct a personal tour. Schedule your visit today at SymphonyPointe.com or call (402) 588-1057.
Independent Living | Assisted Living | Memory Care
like a retreat: peaceful, private, and just enough space to relax without feeling overwhelmed. It’s perfect for people who want to downsize without losing the luxury and comfort they’re used to. It’s about creating a space that truly supports how people want to live in this next chapter.”
South Stream marks the start of a new chapter: less upkeep, more intention. Homes that support a lifestyle where ease and quality, not square footage, take the lead. Downsizing, after all, isn’t just a practical choice, it’s a psychological one. Letting go of space often means letting go of a former version of life: the second set of holiday dishes, the kids’ bedrooms turned storage overflow, or the treadmill that became a coat rack.
It’s not just a beautiful home. It’s a blueprint for how to live well with less. And maybe that’s the quiet thrill of downsizing done right—not what’s given up, but what finally has room to arrive. For more information, visit pohladcustomhomes.com.
Where Conversations Happen
Apiary Social Club Fosters a Community of Connections
every minute detail of the Apiary Social Club—the Club’s name that speaks to its vibe, a growing repertoire of events and community groups, a state-of-theart HVAC system that produces clear air in the cigar lounge, and an inviting terrace with private cabanas and firepits—has been intentionally curated to create “mini-vacations” for members in a sophisticated and relaxed lifestyle facility.
Story by ANDY WILLIAMS
Photos by OMAHA HEADSHOT COMPANY and DOXA MEDIA GROUP
Apiary's cigar lounge
The exclusive space in the Heartland Preserve area of 144th and Dodge has already built a community of more than 300 members in less than a year, with a focus on relaxing and socializing, networking, entertainment, and significant conversations. “With all the noise in the digital world today, you can come to Apiary and have a mini-vacation,” said founding partner Tony Goins. “What we say here is ‘relationships matter.’ You won’t hear TVs blaring when you walk in. If someone isn’t working alone, they’re engaged in conversation. You don’t see anybody at the bar on their phone, and that matters to us. People meet new people because it’s a community. Regardless of your political or religious affiliation, when people spend time together, they find out they have more in common than they do apart. And that’s the true essence of relationships. That’s what happens here.”
Paul West, Apiary’s co-founding partner, had experienced a successful cigar lounge in Lincoln, Nebraska, that was co-founded by Goins a year prior to becoming the state of Nebraska’s head of economic development. West thought Omaha was ripe to embrace a similar concept. He noted that Apiary—the term for a collection of beehives— speaks to the ambiance being created by the Club’s unique environment of quality, luxury, learning, and excellence.
“We want this place to be full of energy, buzzing, people connecting, building community, hence the Apiary name and the bee logo,” said West, also a managing partner of Carson Wealth located just blocks from the Club. “I traveled all around the U.S. with business and spent time in social clubs and lounges, but Omaha didn’t have anything like this. You feel an energy in here of people wanting to
Photo by Omaha Headshot Company
Apiary co-founders Tony Goins and Paul West on the Club's covered terrace
connect. While there is an investment entry point to become a member, we want it to be the most inclusive place in terms of communicating and building relationships. Some people have the opinion that clubs are stuffy. But that’s the polar opposite of what we want and why many members have joined here. We want it to be welcoming and inviting, and that’s the vibe we’re creating.”
Months of strategic thinking and ultra-intentional design of the Club’s core concepts produced a unique structure with a 2,500-square foot, full-service cocktail lounge and equally large cigar lounge and humidor, which are separated by a double-door, positive/negative airflow system that keeps members from getting even a hint of cigar aroma in the community lounge side. “Travel around the world, and you do not see this model—a full cocktail lounge with world-class, high-end, beautiful classic cocktails with no smoke,” said Goins, currently the Global Head of Enterprise Risk Management for Fiserv. “And if you’d like to enjoy a cigar, you simply
step into the adjacent lounge. That’s the importance of thinking about our members and understanding how they like to enjoy their time here.”
Much thought and applied engineering also went into designing the cigar lounge, which on a typical day or evening is sprinkled with members having business meetings over a favorite stogie or “choosing their own adventure” as West described it with another full-service cocktail lounge and comfortable conversation pods. The HVAC system pushes smoke outside and infuses fresh air in its place. “The number one complaint people have about a cigar lounge isn’t the smell, it’s the smoke,” said West, who announced that Apiary will soon launch its own special-blend, limited-production cigar line created by a sixth-generation family factory in Nicaragua. “We often hear, ‘I can smell it, but I don’t feel like I need to take a shower when I get home.’”
Other accoutrements that give Apiary an unshared, proprietary flair include Archetype coffee for daily 10 am openings, quarterly circulations of
Apiary’s humidor
Apiary's cocktail lounge
purchasable artwork from a local artist, geofencing technology and a mobile app that allows members to manage high-touch service and control entry for them and their guests, a fully-AV-equipped conference room for virtual or in-person meetings, individual restrooms stocked with personal toiletry and hygiene items, and a large heated terrace that overlooks a wide-open city and prairie view. “It’s easy to lose track of time out there,” said West, noting that the terrace faces the projected Heartland Preserve amphitheater that will host live concerts. “It’s amazing how people have real conversations around fire pits, and they just lose track of time and soak it all in.”
On top of it all, perhaps one of the biggest attraction points for Apiary is its exclusive social gatherings, educational seminars, and ever-expanding community groups. Members enjoy scheduled gatherings such as a Whiskey of the Month Club, live music, and networking opportunities in groups for real estate and financial service professionals, female CEOs, or people who want to connect over a game like Mahjong.
The pinnacle gatherings at Apiary have become its every-other-month “Infinite Stage” events that feature community, business, and philanthropic leaders recounting their rise to success and their ongoing quest to make a difference in their spheres of influence. The Infinite Stage has welcomed such guest presenters as Omaha Storm Chasers and Union Omaha owner Gary Green, Lisa Roskens of Burlington Capital Group, Trevon Brooks of the
Omaha Innovation Connection Hub, Omaha Chamber of Commerce president and CEO Heath Mello, and Omaha Community Foundation president and CEO Donna Kush. “We want our members to think infinitely about life,” West said. “We think about it from a business, community, and philanthropic perspective. We want people to realize they have great opportunities to influence their families, their business, and Omaha, Nebraska. Beautiful stories are told on that stage.”
West added that Apiary’s unparalleled touches come together to fashion exceptional experiences for members and their guests. “As people enjoy their mini-vacations here, they’re actually talking or relaxing and they’re not worried about what time it is or what’s happening in the world,” he said. “They’re enjoying the company and having real conversations. People have had experiences here that are game-changers. Either they met a prospective business relationship, they made a new friend, or they experienced what I call ‘return on psyche.’ They come here and they feel good when they’re going home or going to the theater or whatever they’re doing. We want to help people create ‘memory moments’—the kind that happen when we’re not glued to a screen or trying to impress anyone. There is no need to show off. We have people in all different kinds of economic, physical, emotional, and business stages here, and that’s great because we can all help each other.”
Tony Goins and Paul West speaking with members
Photo by Omaha Headshot Company
flavor WHERE flows
by the time the first guests stepped through the doors of 30hop this past December, the transformation was nearly unrecognizable. What had once been an empty shell with concrete floors, open beams, and a sky’sworth of windows, had become something far more inviting: a sleek, sunlit bar and grill with architectural timber ceilings, verdant green tile details, and a sweeping 360-degree bar lined with classic leather barstools, the kind that practically invite you to settle in and stay awhile.
Story by BETHANY WALES
Photos by YUM OMAHA
BAJA FISH TACOS
CHOCOLATE LAYER CAKE
“It’s wild to think about what this place looked like a year ago,” said Executive Chef Ben Stewart, who grew up in Omaha and returned to help lead the launch of 30hop’s first Nebraska location. “It was just this big, echoey box. Now it’s got energy. It feels alive.”
The Iowa-based group behind 30hop already operates successful locations in Coralville, Cedar Rapids, and Ankeny, Iowa, as well as Lee’s Summit, Missouri, and Merriam, Kansas. It chose west Omaha for its next venture as part of a larger vision: 30 restaurants over 10 years, if all goes according to plan. But this doesn’t feel like a cookie-cutter franchise dropped onto a map. From the locally brewed beer list to the freedom Stewart has in shaping the menu, there’s a distinct sense of place here.
“There’s a lot happening in west Omaha right now—new spots popping up, more people choosing to live and work out here,” Stewart said. “We wanted to match that energy. This place should feel like part of the neighborhood, not just a chain with a zip code.”
That neighborhood includes office towers, apartment complexes, gyms, and retail centers, and 30hop aims to be the kind of place that fits all of it. Pop in after a workout for a rice bowl and a cold pint, meet a client over lunch, or come back later for cocktails with friends. The menu is designed to reflect that versatility.
On paper, it reads like a global passport stamped with American comfort classics. In practice, it’s bright, bold, and hearty without being heavy. Think appetizers like Bang Bang Brussels, a mound of crispy shredded veggies lacquered in a sweet-chili glaze and topped with scallions, sesame seeds, and crunchy wontons. It’s the restaurant’s best-selling appetizer and the kind of dish that makes an impression at the table without trying too hard. “I like dishes that hit a bunch of notes at once,” Stewart said. “Crunch, heat, sweet, something fresh. When it all plays together, that’s what gets people excited.”
Entrees are organized into four categories: handhelds, bowls, noodles, and salads. Burgers and sandwiches command special attention. Stewart’s
30HOP’S OUTDOOR PATIO
LOCAL TAP BEER
30HOP BURGER
LOCAL BEER AND CRAFT COCKTAILS
EXECUTIVE CHEF BEN STEWART
go-to? The tenderloin sandwich, stacked with juicy meat, a tangy napa cabbage slaw, house pickles, and what he calls the “dynamite sauce,” a spicy-creamy number that pulls the whole thing together.
It’s a menu built for range but rooted in crowd-pleasing flavor. Diners who want something hearty can dive into the sticky Korean noodle bowl or the gochujang-braised short rib sandwich, while lighter options include grilled chicken salads with ginger vinaigrette or grain bowls loaded with roasted vegetables.
And then there’s the drinks list, which boasts dozens of taps, the majority from Omaha’s local breweries. “We’ve got a ton of pride in Nebraska beer,” Stewart said. “There’s so much talent in this scene; it’s kind of a no-brainer to build our list around it.”
The bar, which anchors the space with its circular layout and glowing shelves of bottles, is also the centerpiece of 30hop’s fledgling brunch service, a weekend offering Stewart hopes will find a loyal following in a part of town not especially known for its breakfast culture. “We don’t just want to be good at
brunch, we want to build a brunch community,” he said with a grin. “Somewhere you can post up with friends, get a really solid meal, and maybe start your Saturday with a cocktail that feels a little too fancy for your kitchen.”
That slightly indulgent, elevated-but-approachable tone threads through the overall experience. It’s in the pace and rhythm of service, the openness of the space, and the flexibility built into the concept. It’s also in the way Stewart talks about his team’s autonomy.
“Even though we’re part of a bigger group, there’s real buy-in from the top to make each location reflect its city,” he said. “They trust us to know our crowd. That means I’m not just reading recipes from a playbook. I get to have fun with it.”
That balance between polish and personality, ambition and ease, is what gives 30hop its staying power. It’s a restaurant built with an eye toward the future, but it’s also a place to relax into the present. To catch up with friends. To order one more drink. To come back next weekend—and bring someone new.
Ashley Hedden
Ashley Bundy Darcie Zauha
Kirsten Hilt
Nikaela Schroeder
ETHICS EDUCATION FOR A
Changing Business Landscape
Story by JESSICA SCHAAF, BUSINESS ETHICS ALLIANCE
courtesy of BUSINESS ETHICS ALLIANCE
In today’s polarized environment, even long-standing commitments to an ethical workplace culture can feel unsettling. That’s why the Business Ethics Alliance is helping organizations take a different approach— grounding ethics education in human dignity as a core workplace pillar.
“Many organizations are deeply committed to fostering respectful, ethical working environments,” said Dr. AnnMarie Marlier, executive director of the Alliance. “But most are struggling with how to do that without getting caught up in terminology that’s become divisive or politicized. That’s where we come in—we’re helping organizations continue their work in a way that’s grounded in timeless ethical values, regardless of how the social climate shifts and changes over time.”
During the Alliance’s most recent signature event, business leaders, HR teams, and nonprofit executives explored post-election ethics and the challenges of
Photos
Dr. AnnMarie Marlier, executive director of the Business Ethics Alliance
leading through uncertainty. A common theme shared by the leaders centered on people-first practices, posing the question: How do we stay true to our people and principles when the language around workplace ethics is constantly shifting?
The Alliance has responded with clarity and compassion by refreshing its full suite of ethics workshops, led by one timely new offering: the Ethics of Human Dignity series. Instead of offering a checklist of rules, the Ethics of Human Dignity framework centers on three pillars:
• Valuing Authenticity: Cultivating environments where diverse perspectives thrive.
• Ethical Influence: Creating cultures that protect shared humanity, not just workplace productivity.
• Moral Courage: Navigating consistent ethical behaviors even when it’s difficult, unpopular, or comes at a cost.
“The Ethics of Human Dignity series supports individuals in bringing their whole selves to work—not as a trend, but as an act of courage,” said Dr. Hamza Haqqi, director of educational programs and events. Each workshop session is interactive, research-based, and designed to support professionals across industries — from employee resource groups and community leaders to executives and board members who care about maintaining organizational integrity.
Each workshop is customizable and aligned with the Alliance’s mission to deliver positive, practical business ethics education. Continuing education credits are also available when possible.
“As your business ethics education navigator, the Alliance helps organizations steer through ever-changing landscapes,” said Marlier. “These refreshed workshops are just one of the practical tools we offer to help organizations keep their ethical values centered, even when the path forward feels a bit unclear.” Organizations and professionals ready to explore these new workshops or bring an ethics-focused session to their team can learn more at businessethicsalliance.org.
This new series joins a fully refreshed lineup of BEA workshops, available as a full series or in individual sessions for beginner, intermediate, and advanced learners:
• Ethics 101: This foundational series introduces core ethical concepts, helps uncover personal and organizational blind spots, and equips participants with decision-making tools to confidently navigate ethical challenges.
• Ethical Leadership: Designed for leaders at all levels, this series builds ethical communication, principled management practices, and executive-level strategies to foster integrity, trust, and accountability across teams and organizations.
• Organizational Ethics: This series explores how organizational culture shapes ethical behavior, guiding participants to align values and structures for sustainable, ethics-centered impact.
• Board Ethics: Focused on ethical board governance, this series addresses conflicts of interest, confidentiality, and accountability, empowering board members to lead with transparency, integrity, and trust.
• Ethics of Human Dignity: Rooted in authenticity and respect, this series challenges participants to influence ethically, lead with moral courage, and uphold the dignity of all individuals in business practices and settings.
Participants at the Ethicspace Conference
Investing in
Nebraska’s Students
Story by EDGE CONTRIBUTOR
Photos courtesy of BLUE CROSS AND BLUE SHIELD OF NEBRASKA
North Platte High School essential items pantry
Twelve years ago, Brandy Buscher started at North Platte High School (NPHS) as the district’s homeless liaison, tasked to find students in need. Buscher discovered 78 students in the school district didn’t have the resources they needed to be successful at school or in the community.
After speaking with students to find the gaps, she partnered with local groups and teachers to start an essential items pantry. What began as a collection of non-perishable food has grown into a network of resources and support for a growing list of students in need.
Now, the pantry feeds between 25 and 40 students every week—and the list is growing. “We see kids come to school every day without those basic needs met,” said Amie Albrecht, school counselor at NPHS. “When they get here and they don’t have clean clothes or they didn’t have food that morning prior to getting here, we see the academics take a back seat.”
NPHS partners with the Walmart Distribution Center in North Platte, Nebraska, to provide products and food for the pantry. As the list of students in need grew and the donations kept coming in, NPHS noticed a problem—they needed more space.
In 2024, Blue Cross and Blue Shield of Nebraska (BCBSNE) launched the Healthy Home Team initiative, a multi-year initiative to help high schools across the state with programs that focus on promoting student wellness, from creating calming spaces and school gardens to improving access to personal hygiene products. In its first year, the BCBSNE initiative provided 100 high schools with a $500 grant and one high school with a $5,000 grant to promote health and well-being programs in their communities.
In November 2024, NPHS was selected to receive the $5,000 grant for its plan to expand the school’s essential items pantry to include fresh, nutritious food options for students and families on campus. “Fresh produce is the hardest thing for our food-insecure students to get access to,” said Aaron McCoy, activities director at NPHS. “When we put our team together, we’re able to look at things that help normalize these kids’ lives. This grant helps us round out and take our pantry to the next level by offering fresh produce items.”
The impact of the grant reflects BCBSNE’s mission to champion the health and well-being of its members and the communities it serves through initiatives like those at NPHS. “The future of our state lies with Nebraska’s students,” said Jeff Russell, president and CEO of BCBSNE. “Healthy Home Team allows us to support meaningful programs through our schools that make a real difference in the lives of students and their families—both now and for generations to come.”
BCBSNE recently announced the next round of 100 high schools to receive $500 Healthy Home Team grants. By 2026, the company hopes to reach all 309 Nebraska high schools, contributing over $165,000 in direct funding to support communities statewide. See the full list of 2025 Healthy Home Team schools at NebraskaBlue.com/HealthyHomeTeam.
MAKING EACH MOMENT
count
Story by SHELLY NOSBISCH
Oliver Thoene’s life was forever changed when he was diagnosed with Batten disease at age three. Batten disease is a group of fatal rare genetic conditions that prevent the body from removing waste from cells. The waste builds up in the brain, eyes, and heart and causes progressive degeneration to the nervous system. Only about 14,000 kids worldwide have been diagnosed with the disease. June is Batten disease awareness month, and Stacy Thoene, Oliver’s mom, is sharing their story to help raise awareness.
Edge: How did your family’s journey with Batten disease begin?
Thoene: Our journey to parenthood was filled with years of infertility struggles and medical interventions before Terry and I were blessed with Oliver. Oliver was born on June 6th, 2018. Oliver could throw a baseball before he could walk. He learned to walk shortly after he turned one. He could run like the wind at two, and he could hit a baseball thrown to him before his third birthday.
Our joy was immeasurable until, at the age of three, Oliver began experiencing unexpected seizures.
Edge: I’m sure that was scary. How was Ollie diagnosed?
Thoene: Oliver saw Dr. Isabella Herman who diagnosed him with epilepsy. She also recommended genetic testing. His genetic testing revealed a devastating diagnosis—CLN2 Batten Disease. Our lives were turned upside down.
Photos courtesy of the Thoene family
Next page: Oliver Thoene at Disney World for his Make a Wish trip in 2022
Edge: Ollie must need special treatment. What does he receive?
Thoene: Boys Town’s rare disease team met with us and referred us to Children’s Colorado. The team at Colorado recommended starting Brineura infusions right away to slow the disease’s progression. While not a cure, these treatments grant us the most valuable gift—more time with our Ollie. Ollie currently receives this treatment at Boys Town (the first site in Nebraska to offer this treatment) every 2 weeks. This treatment works by infusing synthetic enzymes directly into the brain through a port. The synthetic enzyme replaces the one that Oliver is unable to produce. Oliver has currently received over 80 treatments. Oliver is able to tolerate the
treatments well and handles the 4-5 hour infusions like a champ but can get pretty demanding at times requesting snacks and hot cocoa regularly with his favorite shows playing on his tablet.
Edge: Ollie was a recipient of Bags of Fun Omaha—how was that meaningful for your family?
Thoene: Shortly after starting infusions at Boys Town, Ollie received a bag from Bags of Fun stuffed with Ollie’s favorite things as well as a tablet that would help him get through the long infusions days. Everything was specifically chosen based on Ollie’s interests. We still bring that backpack and tablet with us every infusion. It has brought a lot of joy to Oliver!
International Batten Awareness 5K at the Thoene home
The Thoene family at a golf tournament to raise awareness for Batten disease
Edge: How does this disease impact Ollie’s day-to-day life?
Thoene: Since his diagnosis, Oliver still loves baseball but has since forgotten how to hit a baseball. He needs help up and down stairs, has lost three-fourths of his vocabulary, has begun to lose his vision and requires a paraprofessional in school. Oliver sees occupational, physical, and speech therapists both at school and at Madonna in Lincoln. Within the last year we also started horse therapy at HETRA in Gretna - Ollie is a huge fan! We travel to Colorado every 6 months for a Batten clinic where we visit with specialists who provide recommendations to our local medical and therapy team.
Edge: Are there any events you participate in for Batten disease awareness month?
Thoene: On July 3rd we will be joined by other Nebraska families affected by Batten disease at the state capitol as they proclaim June 9th Batten Awareness Day in the state. On Batten Awareness Day, we will be having our first Ollie’s Purpose Golf Tournament at NuMark Golf Course in Lincoln, Nebraska, to benefit the Batten Disease Support & Research Association (BDSRA). Then on July 7th we will be having a virtual and in person 5K in Eagle, Nebraska.
Edge: How can readers help?
Thoene: You can find information about our fundraisers or donate to BDSRA on behalf of Oliver by visiting Ollie’s Purpose Fam Funds page https://p2p. charityengine.net/FamFunds/ Fundraising/individual/OlliesPurpose.
The proclamation making June 9th Batten Awareness Day in the State of Nebraska
Oliver prepped for infusion day
The Thoene family celebrating rare disease day on February 28th
Edge: What do you love most about Ollie?
Thoene: Despite all of this, Ollie is still a funny, joyful little boy who teaches everyone he meets about the true meaning of bravery, perseverance, helping others, and loving Jesus. Even on the tough days, you can find him smiling or laughing. In fact, his laugh is contagious! Even when Terry and I find ourselves at a low point, we look to Ollie. He teaches us to live in the moment. He doesn’t dwell on treatments, the losses, the future, he lives for the moment. We try to make each moment count for him. That’s how it should be anyway. We are all only promised today.
Oliver dancing at the National Batten Family & Research Conference in St. Louis, Missouri
LASER FOCUS
Tyler Albert | Graduated Senior | Millard South High School
Story by SHELLY NOSBISCH
Photos by Amanda McAndrews Photography
Millard South High School graduated senior Tyler Albert comes from an athletic family. “Sports is our life,” he said. “As a family we have spent most summer vacations at a baseball field or a basketball arena.” Albert was a starting pitcher for the baseball team and a starting guard for the basketball team at Millard South. “I feel very fortunate. Both coaches supported me through this journey. My last two months of basketball season each year I worked with a pitching coach around my basketball practices or games. In the summer I went from basketball workouts to a baseball practice or game. Both coaches also made sure I stayed focused on the sport that was in season at the time. I have learned lifelong lessons through both sports, and I’ve been able to grow as a person and as a teammate.”
Tim Leuschen, boys varsity basketball coach for Millard South, believes, “Tyler set a good example of how to compete, be coachable, and sacrifice for the good of the team. As a player, Tyler is one of the alltime leading three-point shooters at Millard South.” Greg Geary, varsity baseball coach for Millard South agrees. “Tyler has been a huge asset to Millard South Baseball. Not only is Tyler a tremendous competitor on the field, he is an even better person off the field.”
Albert will attend Wayne State College this fall and pitch for the baseball team. Although he loved both sports, he had to choose one. “Mid-April my junior year I pitched against the number one team in the state and several college coaches reached out to me after my performance. This led me to several
different college visits from Juco to the D2 level. All of this took place from mid-April until October when I finalized my decision to play baseball at Wayne State.” He plans to pursue a sports management degree in hopes to land a career with an athletic organization and maybe even coach one day.
Albert considers himself lucky that he hasn’t had injuries holding him back. “I have, however, learned from the four years at Millard South to ‘trust the process.’ When asked to sit the bench rather than starting because we need a bigger guy on the court, I have learned to be the bigger person no matter what my position is at the time and to find a way to help my teammates in a different way.” Albert gets motivated by listening to music. “Music gets me started, but my motivation comes from within when I compete and walk away knowing that I gave my very best.”
Highlights of Albert’s multi-sport career at Millard South include the Omaha World-Herald All-State honorable mention for baseball his junior year and basketball his senior year, the opportunity to play in the National High School Baseball Championship Games, and being awarded the Patriot Basketball Club/AJ Locum Scholarship. Albert broke many school records for basketball, and he is proud of making it to State for baseball his junior year and playing at Werner Park.
When he’s not on the basketball court or the baseball field, Albert enjoys participating in Unified Sports, a program that allows athletes with intellectual disabilities to participate with partners who do not. “I also enjoy hanging with family and friends (cards, video games, wiffle ball, golf, swim).”