Meet the team of adaptive athletes, led by Nicole Ver Kuilen, at the forefront of the movement community to make adaptive racing – and everyday activity – accessible for all.
This feature was first published on OFF Stories, the home of stories that move you from Swiss sportswear brand On.
View feature by Laura Markwardt. Photography by Patrick Pressgrove and Brandin LeBlanc.
Through our social impact program, Right To Run, On supports organizations that alleviate barriers to movement in communities, to protect and preserve every person’s right to run and move. This year, we supported So Every BODY Can Move: 28×28, sponsoring their adaptive Hood to Coast Relay team, to raise awareness around the barriers to movement faced by their community.
Leader of the initiative and the 28×28 mobility movement is para athlete Nicole Ver Kuilen. Nicole is also co-founder of Forrest Stump, a non-profit that helped serve as an organizer for the Hood To Coast team, along with a fiscal sponsor to the So Every BODY Can Move initiative.
Co-captains of the Hood To Coast team are Kyle Stepp and Dee Palagi. The relay team, who hail from the US and Canada, takes on the challenge for the second time: “Last year, and now, in 2023, we’re one of – if not the only – all-physically challenged team doing Hood to Coast,” explains Nicole, from Vancouver, WA. “We’re at the forefront of this whole movement community to make adaptive racing more accessible.”
Their organization is a National Mobility Movement working to expand access to movement-specific prosthetic and orthotic coverage in 28 states by the 2028 Paralympics.
“We’re one of – if not the only – all-physically challenged team doing Hood to Coast.”
And there’s a lot of ground to cover. The team’s demographic currently represents less than one percent of an almost 20,000-deep field of runners. Better access to specialized prosthetics, orthotics, wheelchairs, sighted guides, and other medical care to be physically active, can overcome barriers to exercise for all.
“Not only is our team raising awareness for better access to the orthotic and prosthetic care that make it possible for us to get to the starting line,” Nicole continues, “we’re also building opportunities for there to be a category of racers like us, an adaptive category, where teams can race against each other and have that sense of camaraderie in the future.”
Hood to Coast is the world’s biggest two-day relay race. Teams of up to 12 athletes – from over 40 countries globally – gather in Portland, Oregon, to race 196 miles (315km), from the top of Mount Hood to the sandy shores of Seaside, a resort city on the Pacific coast.
The route is split into 36 sections (called “legs”) with 35 exchanges where runners hand over to their teammate with a wristband, or a high five. Like the event in its entirety, the diverse energy of the relay itself is huge and shared in the stories that bring runners to the top of Mount Hood, as they move through landscapes and emotions – finally reuniting on the beach at Seaside.
Nicole Ver Kuilen lost her left leg to bone cancer when she was 10. Her journey is one of running down every opportunity with the best of what she has. A prosthetic leg not designed for sport, painful running experiences in college, and health insurers refusing to cover the cost of a running blade – deeming it “not medically necessary” – made her more determined to keep going.
Without health plan coverage, costs of prosthetics suited to physical activity are prohibitively high (up to $50,000). And the scale of the issue is vast – there are over six million people living with limb loss, limb difference and mobility impairment who may use a prosthesis or orthosis in the United States. Even for those who are covered by state, federal, and private health insurance plans, the majority of policies don’t cover prosthetics and orthotics for physical activity.
The alternatives for those who need them are less than a compromise: Risking injury by using ill-suited prosthetic devices, or putting your whole life on hold by being sedentary.
In 2018, Nicole completed a 1500-mile triathlon along the West Coast of the United States.
Notably, the most difficult part of this journey wasn’t the epic distance – her determination and endurance ability saw to that. The challenge, and inherent risk, was that her insurance-mandated prosthesis was built only for walking.
Kyle Stepp, from Albuquerque, New Mexico, had to navigate a broken healthcare system after he lost his left leg from complications related to bone cancer, 12 years ago. He continues to chase his dreams in sports and outdoor adventures, “Strangers, friends, and family would say, ‘You’re such an inspiration,’ and I would struggle to hear those words. I know the intention of their comments comes from a good place, but what makes me an inspiration compared to the non-disabled person doing the same activity?”
He sums up the lived experience of psychological, structural and societal inequality when it comes to equitable access to movement, “The reason individuals with disabilities who are physically active are viewed as an inspiration is because it’s just not normalized for us to be physically active.”
And all of this circles back to the lack of access, “If every single person with limb loss or limb difference knew from the beginning that they could get access to a device for physical activity,” Kyle continues, “it would start to become normal.”
“The reason individuals with disabilities who are physically active are viewed as an inspiration is because it’s just not normalized for us to be physically active.”
Along with Nicole and Kyle, the team includes Dee Palagi, SaraMae Hollandsworth, Robert Anthony, Leah Kaplan, Patrick Pressgrove, Kelsey LeFevour, Erica Korpi, Kionte Storey, Amelia Dittmar-Maggs and John Edward Heath.
Together, they collectively work to push back on limiting narratives around the disabled community that often fall into two categories: the superhero (such as the Paralympian) or living a sedentary lifestyle.
The diverse athletic backgrounds of the team reflect the nuanced reality of movement on a spectrum. Team member and everyday mover, Amelia Maggs-Dittmar, from Denver, CO, lives with below-knee limb loss and explains, “This is my first official time doing anything athletic in an event. I want to give time to sports and see what I can actually do as an amputee.” As chance would have it, many of Amelia’s teammates are well-versed in what can be done.
Hood to Coast is known as the ‘Mother of All Relays’, it’s fitting then that athlete, team member and below-knee amputee, Kionte Storey describes the team dynamic as, “like family.” But despite that unconditional support, as in any team, whatever their athletic background, members can struggle with doubts about their own ability to perform.
SaraMae Hollandsworth, from Dallas, OR, ran Hood to Coast as an able-bodied athlete two decades ago. She made an emotional return this time around as a bilateral below-knee amputee and credits the So Every BODY Can Move team dynamic for carrying her, “sometimes physically,” to make the distance.
She calls her first leg of the relay, “showtime” – it was game on to keep her balance when running at 3 a.m. “It was dark, and as a bilateral amputee on running blades, my balance is not good.”
Her second leg was in daylight, with temperatures peaking at a sweltering 95 degrees Fahrenheit (35 degrees Celsius). “I just thought, ‘Don’t be a heat casualty. Don’t worry the team.’” More sweat, fatigue and friction complicates the use of prosthetics. This was an additional challenge for the whole team, “I just kept moving,” says SaraMae.
Her third and final leg brought it home, “All of a sudden I see my squad holding up prosthetic limbs. It was just so exciting to see everybody and so grateful that I didn’t let anyone down,” she says. “Then to have us all cross the line and know that we did it together, with every one of us having their own personal full circle moment, their own personal triumph, was so special – movement and community are medicine.”
And the actions of that community have a positive ripple effect, like a pebble skimmed on the beach at Seaside. So Every BODY Can Move has support from adaptive athlete, Zachary Friedley – who just completed UTMB’s 40km Martigny-Combe to Chamonix race – and his legendary coach, Eric Orton, both sharing their training tips with the team in the lead-up to the relay. All are aligned on the vision to create legislative change that gives more people access to prosthetic and orthotic care for physical activity, so they can unlock the healing power of movement.
“Movement and community are medicine.”
Leah Kaplan, a teammate and athlete with upper limb difference, from Spokane, WA, explains that lack of access, often seen as an issue for people with disabilities – is actually a factor of our external spaces and perception of it, “It’s the environment or society that disables you from having access to be able to move.”
Already, on a micro-level by showing up last year and making a noise, So Every BODY Can Move have affected changes made to the Hood to Coast race, making that environment more accessible for others.
Nicole gives a shout-out to Dan Floyd and Felicia Hubber, the Hood to Coast Race Directors who made changes to this year’s race. This year’s race is more accessible for everyone, with updates including more accessible parking at exchange zones and better access to the chute at the finish line. “There’s still more to be done in terms of more accessible restrooms at exchange zones and accommodations like Access Trax or Mobi Mats on the beach for wheelchair athletes,” she says. “Our wheelchair athlete, Kelsey LeFevour, really wanted to finish the race in her own wheelchair, it’s an extension of herself.”
The goal is broader inclusive change, “There are still many races to come down the road,” says Nicole. And it’s gaining momentum with every year.
To tell the unique story of adversity and triumph behind every journey – that continues beyond Hood to Coast – is impossible, “Living with a disability is just a small fraction of who you are,” says Kyle. And yet, a single, unified narrative unites them all: “Everyone deserves to run their race and cross their finish line. Movement is a right, not a privilege.”
Robert Anthony, teammate, athlete and below-knee amputee, from New York, reflects after the race, “This wasn’t about any one person, this was bigger than us.”
With thanks to
Four partner organizations are behind the So Every BODY Can Move initiative. They include Nicole’s employer, the American Orthotic & Prosthetic Association (AOPA), the Amputee Coalition (AC), the National Association for the Advancement of Orthotics & Prosthetics (NAAOP), and the American Academy of Orthotists and Prosthetists (AAOP).