Realizing a Dream for Improved Rehab Access

Natalie Barnhard spent most of the 17 years since she became paralyzed supporting people with disabilities by providing and improving access to rehabilitation in her Buffalo, New York, community. Her pre-injury background in physical and massage therapy, combined with her personal experience after sustaining a C5-6 injury, reinforced her belief that her community needed an accessible and convenient rehabilitation option. This June, United Spinal Association honored her as the 2021 Finn Bullers Advocate of the Year for her continued advocacy toward making her dream a reality by raising funds for and launching the Natalie Barnhard Center for Spinal Cord Injury Rehabilitation and Recovery.

“Being named Advocate of the Year has been amazing. It’s great to receive peer recognition, and it provides a forum to share what we’re doing with the rehab center,” she says. “Before our soft opening, leading up to the grand gala opening, the closest place for rehab for folks with SCI was about 300 miles away.”

Opening the Center is the latest accomplishment in Barnhard’s impressive advocacy career. She also founded the Motion Project Foundation and the Western New York Chapter of United Spinal Association.

The Motion Project Foundation provides funding for medical equipment, home or vehicle modifications, intense therapy rehabilitation, advocacy, and other services and activities to improve the lives of individuals with a spinal cord injury. In less than a decade, it has raised close to $500,000 and awarded about $350,000 in grants.

“Natalie is fulfilling a dream and a passion of hers to help others in her community. This dream has driven her ever since she sustained a spinal cord injury at the age of 24,” says Alexandra Bennewith, United Spinal’s vice president, government relations. “I am in awe of Natalie’s commitment and achievement in getting this center open and am grateful to her and her family for their focus on this critical issue and happy to hear that people in our community now have a place to go for help with rehabilitation.”

About United Spinal Association’s
Finn Bullers Advocate of the Year Award

Finn Bullers was a journalist and advocate who fought for better Medicare and Medicaid coverage and ratification of the Convention on the Rights of People with Disabilities. A longtime reporter at the Kansas City Star, Bullers had Charcot-Marie-Tooth, a form of muscular dystrophy that affected his mobility. He worked with stakeholders across the country on the Accessible Icon Project to update the traditional symbol for disability.

Bullers died from pneumonia at age 56 in 2016. United Spinal Association named its Advocate of the Year Award after him in 2017 and has awarded it annually to deserving member advocates at the Roll on Capitol Hill. The award was not given out in 2020 when ROCH was canceled due to COVID-19.

Previous Winners

2019: Kenny Salvini & Rob Wudlick

In 2015 Salvini, a quadriplegic since 2004, founded the Here and Now Project to empower and serve the paralysis community in Washington State. The nonprofit has steadily grown since and now hosts multiple support groups, get-togethers and events every year. It doubles as a chapter of United Spinal. Salvini is a regular contributor to NEW MOBILITY and blogs at kennysalvini.com. He wants “to build a community where a group of people in seemingly dire circumstances are able to pool their collective experience, strength and hope in order to successfully achieve an enhanced, more accessible life.”

Wudlick (left), a quadriplegic since 2011, is a driving force for SCI/D research and a committed advocate at the national level. He helped devise and push through novel legislation to fund SCI/D research in his native Minnesota and worked with advocates from other states to assist them with similar efforts. In 2014 he cofounded Get Up Stand Up to Cure Paralysis Foundation. Currently, he works to advance medical research for spinal cord injury as a clinical trial research project manager in the Rehabilitation Medicine Department at the University of Minnesota.

2018: Earle and Kathy Powdrell

The Houston-based husband and wife team became a relentless voice for the SCI/D and broader disability communities after a 2009 brain stem stroke left Earle with “locked-in” syndrome — paralyzed except for eye movements. Earle, an aerospace engineer, and Kathy, a theater teacher, were regular attendees at United Spinal’s Roll on Capitol Hill and leaders in the Houston United Spinal chapter. Earle used eye-tracking software and a voice synthesizer to elegantly articulate the issues and needs of the disability community. Earle and Kathy’s energy and passion were magnetic and known to compel even the most hardened audiences. Earle, who championed accessible air travel and the preservation of the ADA, died in 2019.

2017: Frances M. Ozur Cole

Frances M. Ozur Cole is the former president of United Spinal’s New Mexico Chapter and a committed advocate for issues that affect the independence and quality of life for people with SCI/D and other preexisting conditions. Ozur Cole, who began using a manual wheelchair in 2004, is also a business entrepreneur, graphic designer and former electrical engineer. She lives with congenital narrowing of the spinal column, and her mobility is impacted by recurring herniated discs. A native of the Washington, D.C., area with politics ingrained in her blood, Ozur Cole attended multiple Roll on Capitol Hills to advocate for greater access to complex rehab technology and medically necessary wheelchairs.

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A Commitment to Service

Before sustaining her spinal cord injury in 2004, Barnhard was a physical therapy assistant and a licensed massage therapist. She used her hands to help people heal. “I was at work when a 600-pound weight machine toppled over on top of me,” she says.

Following her rehabilitation, Barnhard adapted the way she worked to continue helping others. The ultimate result was the Motion Project Foundation. The opening of the new 6,000-square-foot rehabilitation center takes the foundation’s work to another level. Barnhard notes that it is not a general rehab facility but focuses on improving function and helping clients in nontraditional ways.

“We help educate clients and families, so they know what to expect moving forward with a spinal cord injury,” Barnhard says. “Motion Project is not just about the physical gains — we strive to get clients back to work, to school or into sports pursuing their dreams. Our goal is to support each client to reach their goals and live a full, productive, healthy life.”

“We focus on the client’s weaknesses and work on coordinating the entire body in a very functional and complete style of rehabilitation,” she says. “Many facilities tend to focus only on the client’s current abilities and don’t work with the affected areas to improve motor function overall. Motion Project works to support the whole person to assist with advocacy, care navigation and spiritual healing.”

On top of all that, clients will have access to state-of-the-art specialty equipment such as the Lokomat gait trainer; Armeo Spring, an arm weight support for reach and grasp movements; ZeroG, a robotic bodyweight support system; and Madonna ICARE, an intelligently controlled assistive rehabilitation elliptical trainer.

“The equipment is adapted [to SCI and related needs], and the trainers understand what the goals and expectations are. It’s not like going to PT in an institution. It’s going to a warm, colorful and fun place,” Barnhard says. Noting the Center’s proximity to the airport and numerous amenities such as hotels and restaurants, she envisions starting something that goes beyond rehab.

“We believe that this should be an accessible place where people can come to enjoy their time in our gym but also socialize with others,” Barnhard says. “We have created a unique space with a fun, vibrant environment to exercise in and also a holistic environment with an infrared sauna for relaxation, peer support and general wellness.”

To realize this vision, Barnhard and the Motion Project have collaborated with many of the key stakeholders in the local community, including the University at Buffalo School of Public Health and Health Professions, Erie County Medical Center, Greater Buffalo Adaptive Sports and WNY Adaptive Recreation.

“Our goal is to continue to make essential partnerships and collaborate with various other businesses and organizations to enhance the recovery process for our clients in and outside of western New York,” she says. “I believe we cannot only help people within the Buffalo area but nationally as well.”

Barnhard knows that providing the financial resources to help people get the rehab they need is as important as providing the physical facility. She understands she was fortunate that workers’ compensation paid for most of her long stay at Shepherd Center, as many people do not have the funding for ongoing care and other essentials such as durable medical equipment.

“I want everyone to be able to receive the care and resources they need to live their life to the fullest,” she says. She is pursuing fundraising, grants, donors and sponsorships to create a larger endowment “so no one ever gets turned away regardless of ability to pay.”

Bennewith singled out Barnhard for her commitment to addressing one of SCI’s most vexing issues. “Unfortunately, insurance plans do not cover our community’s rehabilitation needs sufficiently,” she says. “Which is why Natalie’s work fills a huge gap in this space for our community and the broader disability community and why her advocacy work must be acknowledged and recognized.”