$7.1 Million Awarded in Creating Opportunity & Independence Grants

November 15, 2023

A smiling blonde woman sits sideways on a wheelchair as she shows off new accessible fashion items, including knee-length brown boots
Funding helped the University of British Columbia realize its FashionABLE event

Over 70 organizations serving people affected by and living with spinal cord injury (SCI) have been awarded a total of $7.1 million in Community Support Grants from the Craig H. Neilsen Foundation’s Creating Opportunity & Independence (CO&I) portfolio.

These grants fund everything from rehabilitation and independent living to assistive technology, education, and arts, sports and recreation. As a result, the breadth of CO&I is vast, and the grants help to underpin the Neilsen Foundation’s mission to support programs improving the lives of those living with SCI. Our grantee partners are offering improved self-sufficiency for people with SCI—for example, by providing them with service dogs and driver rehabilitation programs. Funding also helps to educate medical staff, so they can provide primary-level rehabilitation for the underinsured, and infrastructure that enables organizations to enhance their assistive technology.

“Our partner organizations are working hard to improve opportunities for individuals with SCI.”  CO&I Program Officer Darrell Musick explains. “We received a strong cohort of applications with impressive project outcomes.”

Seeking to build relationships, Foundation staff works to establish easy communications and we welcome questions from applicants. We want everyone applying to propose work that advances their mission and ours. Recognizing that preparation of an application costs an organization time and energy, we aim to provide detailed instructions and support throughout the process. Staff-led webinars offer organizations in the process of applying an opportunity to reach out if they have questions or concerns.

In 2020, with the help of the Center for Effective Philanthropy, the Neilsen Foundation conducted its first grantee perception survey. Grantee comments about the limitations of single-year funding led to a program shift the following year when we extended the allowable grant length—inviting both one- and two-year applications. This option not only offers flexibility, but it also enables organizations to propose high impact projects that may be of broader scope or duration, while cutting back on administrative time. As a result, we have seen a significant uptick in the Independent Living category.

Darrell adds, “The two-year option is helping organizations focused on independent living to increase support for people with SCI by providing ongoing care during their early transition from rehabilitation to home, as well as transportation and accessibility to their living spaces.”

Community Support Grants are focused on enhancing an individual’s quality of life on a daily basis. Whether it’s a project to acquire new technologies or provide equipment, or an arts program that allows for greater accessibility, these grants are incredibly meaningful for the people they touch. Understanding life through the lens of SCI can be difficult for some, but the passion coming from our grantee partners paints a beautiful picture of what’s possible.

Understanding Psychosocial Research

Two women laugh as they discuss an exercise schedule at a table.
Health and wellbeing counseling

The Neilsen Foundation first invited Psychosocial Research (PSR) applicants in 2013. Since then, we have awarded over 130 grants for a total of nearly $36 million. But what is psychosocial research? And what impact could it have on people with spinal cord injury (SCI)? As we celebrate the 10-year anniversary of the portfolio, let’s take a deeper dive into this multi-faceted idea to better understand what PSR is.

When thinking about research, laboratories full of test tubes and scientific instruments come to mind—but PSR is different. It’s about understanding what people face after SCI and how their social interactions and participation in daily activities change. As this is a scientific area, the terminology can be pretty mysterious, for example, “studies of the ways in which psychic experience and social life are fundamentally entangled with each other” is one definition found on the internet. But what exactly does that mean?

Put more simply, this kind of research attempts to identify where people are in their journey and what barriers they face. Our grantee partners focus on mental health concerns that people living with SCI may face, like depression or loneliness, but also the mindsets that give a person resilience and coping skills. The “social” part of the research looks at the interpersonal and environmental factors that influence people’s wellbeing—the ability to fully participate in one’s chosen activities being key. The goal is to discover methods to help individuals with SCI by looking at the whole person, identifying ways to ease the transition back into daily life in an unfamiliar body, and to find ways to help them meet personal goals.

PSR scientists are led by input from the people living with the injury and their caregivers. Their studies often involve interviews and focus groups that allow people to express how they experience the impact of SCI—everything from health behaviors to lifestyle, as well as interactions with family members. Researchers ask questions about what is important to the SCI community, try to identify societal and physical barriers to full participation, and observe reactions to new approaches designed to help overcome physical or emotional challenges.

Topics of study in PSR are far-reaching. They include affordable and accessible housing, intimacy with partners, disability identity, employment, social isolation, pain management, and much more. When focusing on physical health, researchers also delve into concerns about pregnancy, weight gain, bowel care and bladder management, sleep disorders, and blood pressure regulation.

The goals of research supported by the Neilsen Foundation go beyond studying the issues. The aim is to develop strategies, tools, and therapies that will help people with SCI gain the confidence and skills they need to reach their personal goals. The hope is to help people take the best care of themselves as they navigate and overcome the barriers SCI puts in their path.

Approaches to Wellbeing

October 10, 2023

Six people in wheelchairs gather in a circle in a Fall park setting
A group session at Sunset Hill Education Institute

In our fast-paced, always connected world, finding approaches to improve wellbeing is more important than ever. Over the past few years, we have seen a rise in opportunities to calm the noise and find a little inner peace. The breadth of what the Neilsen Foundation supports is vast, not only across the United States and Canada, but through the various organizations we partner with. Each year we support programs that provide a wide variety of creative outlets to enhance the wellness of individuals with spinal cord injury (SCI).

Several of our grantee partners have developed adaptive health and wellness classes, including tai chi, yoga, and aerobics for people with SCI—one offers summer yoga sessions on the banks of Shaver Lake in California. Another created an opportunity to learn photography as “a means of creative expression” and a way to “channel negative emotion into something positive.” Meanwhile, Wellness for Life in South Carolina is taking wellbeing practices virtual by providing a website page aimed at serving the needs of individuals with SCI by exploring topics like sleep, intimacy, and nutrition. Their Breeze Peer-Support Groups also offer monthly presentations and outdoor adventure activities.

Sunset Hill Education Institute (SHEI) in New Hampshire used Neilsen Foundation support to create their Nature’s Way program with a holistic health and wellness coach. That recently completed, two-year project provided wheelchair accessible pathways to nature, giving people with SCI opportunities to connect with themselves—and others. “Individuals have opened up their perception on wellness and mental health,” SHEI founder Carol Conforti-Adams explains. “People in wheelchairs can really widen their perspective and look at nature and how it adapts and changes and grows. We all need to learn to be adaptive and grow.”

Wellness and good mental health are a top priority for people with SCI who are dealing with chronic pain. Researchers are looking at alternative methods of relief to help individuals who cannot find comfort using currently available treatments. Our partner grantees are studying alternatives to drugs as a pathway to better pain management. One recently completed research project tested a community-based program that used meditation, paced breathing, and relaxation training to reduce anxiety and its effects on chronic pain. Other approaches being studied include hypnosis-enhanced cognitive therapy during inpatient rehabilitation and mind-body interventions, such as guided imagery, to reduce acute and chronic pain.

Everyone deserves to feel good, be at peace, be able to participate fully in life, and have access to activities that nourish the soul. Many of our grantee partners are dedicated to increasing the wellbeing of people with SCI. A little quiet time with yourself or with groups of like-minded people can have huge benefits.

Presidents' Council of the Disability & Philanthropy Forum

Five professionals sit around a well set dinner table. They are deep in discussion.
Members of the Presidents’ Council at the 2023 meeting

Five years ago, the Craig H. Neilsen Foundation joined a peer community of top foundation executives who recognized that disability inclusion is critical to solving some of society’s most critical human rights, social justice, and health equity challenges. For the Neilsen Foundation, inclusion is one of our core values and our involvement with the Presidents’ Council pushed us to ask what else we can do to support the disability community? The impact has been a two-way street. Since joining the Presidents’ Council in 2019, we have been able to share our experiences working with the spinal cord injury (SCI) community. We have also had the opportunity to collaborate with our philanthropic colleagues, which has expanded our thinking of what it means to build a culture of inclusion and to increase leadership and participation of disabled people in philanthropy. Our involvement has influenced our grantmaking philosophy far more than we anticipated.

We believe that a key way for the Neilsen Foundation to learn and grow is through collaboration—sharing both information and viewpoints. The Presidents’ Council quickly came to a similar conclusion, with members prioritizing dialog and supporting the development of the Disability & Philanthropy Forum. The Forum emerged with the goal of sharing information and advancing the long-term vision to help the philanthropic sector integrate disability rights seamlessly into its agenda. It was exciting when the Forum announced its mission to mobilize philanthropy to dismantle ableism by increasing funding for disability inclusion, rights, and justice; amplifying the leadership of disabled people in the philanthropic sector; and educating philanthropy to build a culture of inclusion.

Another priority of the Council is the Disability Inclusion Fund, which provides funding for organizations run by and for people with disabilities. The first grants were made in 2020 and the Fund has since supported 72 disability-led groups for a total of $9.4 million. These grants celebrate work that creates and uplifts the representation of people with disabilities in the arts, media, education, community, and popular culture. To learn more about funding opportunities, visit their website.

Partnership is important to the Neilsen Foundation and over the last five years our involvement with partners on the Presidents’ Council has helped evaluate our processes and identify ways to better engage with the disability community. We have expanded our funding to build capacity for organizations that benefit the SCI community, built opportunities for those with disabilities to participate more fully in research, developed a more accessible Neilsen Foundation website, and increased support of educational programs for students with SCI.

Being more inclusive has required intentional decision making, the allocation of time, and dedication of resources. It’s not an overnight shift and will likely need ongoing attention to ensure our practices match our objectives. We hope those in the philanthropic sector realize that they are not alone in this disability inclusion journey. No matter where you are on your journey, there is no idea too big or too small if it represents progress. Every action step forward is meaningful. Start now. Let’s do this together.

2023 Craig H. Neilsen Visionary Prize Awardees Announced

September 19, 2023

The Craig H. Neilsen Visionary Prize honors the legacy of our Founder by shining a spotlight on the wide range of individuals who embody the values he exemplified during his lifetime with their work to make the world a better place for people living with spinal cord injuries. This year’s Craig H. Neilsen Visionary Prize recipients are Victor Calise, Carmen Daniels Jones, and Vincent Pierce. Each will receive an unrestricted $1 million award.

Launched in 2020, we are proud to celebrate individuals across a broad spectrum of expertise that includes artists, athletes, advocates, and researchers, as well as healthcare workers. Since its inception, the Foundation has awarded the Visionary Prize to 12 people across the U.S. and Canada.

Like our past awardees, Victor, Carmen, and Vincent have been an inspiration to others—showing determination, boldness, and a willingness to think bigger than themselves. We applaud their achievements. Here is a little information about the 2023 recipients of the Craig H. Neilsen Visionary Prize:

Victor Calise

As the Director of Belonging Culture, Equity and Inclusion at Walmart, Victor helps integrate disability into every aspect of the company—from employment to the accessible shopping experience. Prior to his time at Walmart, he spent over two decades in public service, culminating in his role as Commissioner of the New York City Mayor’s Office for People with Disabilities from 2012­–2022. A longtime disability advocate, Victor advised three mayors and agency partners on accessibility issues and chaired the Accessibility Committee of the City’s Building Code.Smiling man with gray hair, wearing a scarf and blue blazer, in front of a gray background

Following graduation in 2002, Victor became a consultant to the NYC 2012 Olympic and Paralympic Bid, working with the U.S. Olympic/Paralympic Committee and International Paralympic Committee. He also served as the Director of Special Projects and Director of Sports Marketing at United Spinal Association. Victor began his city service career in 2006 with the New York City Department of Parks and Recreation, working with the Capital Division and leading efforts to make one of the world’s largest and most complex parks systems more accessible by ensuring accessibility standards met and exceeded compliance in construction standards and managing facilities.

His leadership led to the creation of the NYC: ATWORK employment initiative, which directly connects individuals with disabilities seeking employment and businesses with open roles. He was appointed to his current position at Walmart in March 2022, and works at the company’s new Accessibility Center of Excellence.

An avid athlete, he competed in the 1998 Paralympic Games in Nagano, Japan as a member of the first U.S. national sled hockey team. Victor graduated from St. John’s University with a degree in sports management and received a master’s degree in urban affairs from The City University of New York. A native New Yorker, he lives on the Upper West Side with his wife, Susan, and two daughters.

Carmen Daniels Jones

Carmen is the President & Founder of Solutions Marketing Group (SMG). A passionate executive, she has over 20 years of experience in marketing, partnership development, diversity and inclusion, and community engagement.Smiling woman with short brown hair, wearing a vibrant yellow cardigan

In her work at SMG, which she founded in 1999, Carmen advises companies on the viability and economic vitality of the disability market and positions them as inclusive industry leaders. She drives a passionate and informed conversation around the needs and desires of the disability community.

She began her career at The Peninsula Center for Independent Living, where she worked with people with a range of disabilities. Carmen also served as Vice President of Marketing at Evan Kemp Associates, Inc., a Washington, D.C.-based medical equipment and supplies company owned and operated by people with disabilities.

Carmen served at the U.S. Department of Agriculture (USDA) as an appointee of the Obama Administration. There, she fostered relationships with small businesses and socially disadvantaged farmers throughout the rural south. She was ultimately named the Director of the USDA’s Office of Small & Disadvantaged Business Utilization. Carmen has also worked with global brands, including AT&T, Bank of America, and JPMorgan Chase & Co. As of March 2023, she has been a member of President Biden’s Architectural and Transportation Barriers Compliance Access Board. She also serves on the boards of the United Spinal Association and the World Institute on Disability.

Carmen graduated from Hampton College in Virginia with a marketing degree and now lives in Metro Atlanta, Georgia.

Vincent Pierce

Music producer, poet, and community organizer, Vincent is the director of the arts-and-justice nonprofit Open Doors—a collective of “disabled artists, nursing home residents, and allies.” As part of this organization, he travels around New York sharing his poetry and lived experience to inspire and educate others.Man wearing black baseball hat

As a teen, Vincent moved to North Carolina, where he studied music and played on multiple basketball teams, before moving back to New York in his early twenties. He turned to poetry to share his story and produced his first album, Open Doors Reality Poets Vol.1, in 2019, with a grant from the Center for Cultural Innovation. His poetry and writings are featured in the book Wheeling & Healing: A Poetry Anthology. With a grant from the Center for Cultural Innovation, Vincent also founded the music program ZING! The School for Composing, which aims to give under-served youth in his neighborhood a recording studio safe space.

In 2022, he was recognized with the New Mobility People of the Year award as a member of the Open Doors Reality Poets—a group of gun violence survivors working to uplift youngsters. Vincent also features in the award-winning new documentary Fire Through Dry Grass, which chronicles the Reality Poets and their nursing home experiences during the COVID pandemic.

In 2020, Vincent founded #NursingHomeLivesMatter, an initiative aimed at protecting the lives and freedoms of the residents at his Roosevelt Island nursing home. He now hopes to take the movement, which strives for a healthcare system that protects, respects, and cares for people of color in long-term care, national. He became the only nursing home resident to speak before the New York State Hearing on Residential Healthcare Facilities and COVID-19.

$4 Million in Student Scholarships Awarded to Colleges & Universities

September 15, 2023

Four students in wheelchairs, all dressed casually for a Fall event, link arms on a basketball court
Scholars enjoying campus life

The Craig H. Neilsen Foundation is awarding $4 million to academic institutions for scholarships to 32 students with spinal cord injury (SCI). These scholarships include support for tuition and fees, as well as funds to remove additional financial barriers the students may face while attending college—including costs associated with housing, transportation, and adaptive technology. We are proud to partner with organizations of various sizes, across the country that offer associate, bachelor’s, master’s, and doctoral degrees, and we applaud all students who challenge themselves by pursuing higher education.

The Neilsen Foundation launched this program with eight schools in 2014. It acknowledged our Founder’s dedication to education access and tried to address some of the specific needs for students with SCI. The number of institutions we partner with has grown, increasing to 11 in 2018, then up to 17 in 2022. To date, the Foundation has helped 328 students with SCI and committed approximately $25 million towards their education goals.

The organizations that partner with the Foundation are giving students with SCI the opportunity to succeed by breaking down barriers to academic success. That might mean making campus activities more accessible, encouraging peer interactions, or meeting the specific needs of individual scholarship recipients. In addition to their time in the classroom, some students have also participated in adaptive sports and joined teams or clubs on campus. To facilitate this integration into campus life, the Foundation works with the disability resource office staff and underwrites some of the programming.

To highlight the recruitment and retention success of our partner institutions, the Neilsen Foundation has launched a webpage showcasing the scholarship recipients who have graduated. Julea Juarez, who oversees the Neilsen Scholarship Program, shares, “The success of the Program relies on our partner institutions who work hard to identify students with spinal cord injuries attending their institutions. Recipients of the scholarship are supported throughout the duration of their degree program.”

Peer Mentors Help Build Paths to Success

Finding someone who understands what you are going through can be pivotal after a traumatic injury. We all need help and support—from family and friends, counselors, doctors, lawyers, and teachers—but where does one turn to learn about managing a new normal after a spinal injury? Doctors can help you understand your medical needs and lawyers are there to respond to legal questions, but who is going to help you apply for Social Security benefits? Living with a spinal cord injury (SCI) is hard to comprehend for a newly injured person and their loved ones, and finding mentors who have lived through what they are experiencing can offer insights no one else can.

For individuals with SCI, the early weeks of recovery are vital. They set the course for how you will respond to treatment and how successful your transition to life and community will be. At this time, it’s often a stranger in a wheelchair who can become the friend you didn’t know you needed. A peer mentor who has overcome their own obstacles and challenges can help guide you through an uncertain time. This support offers first-hand accounts to give an individual an understanding of how to manage their current situation and how to prepare for what may be to come.

Two men, in wheelchairs, wearing shirts and identity badges on lanyards deep in conversation during a peer counseling session
Peer mentorship at Rancho Los Amigos Rehabilitation Hospital

The Neilsen Foundation is very proud to partner with organizations who provide peer mentorship networks, which seek to match people to individuals that have more lived experience that reflect a person’s socioeconomic, cultural, and ethnic backgrounds. These mentors can provide guidance, helping individuals set goals. They help establish expectations as one transitions from the hospital to home and back into their community. Whether it’s getting back behind the wheel of a car, dating, or seeking out sports and other social groups, it’s important to learn how.

Some mentors insist their injury was a turning point—a chance to find a purpose in life and help others in need. Rancho Los Amigos Rehabilitation Center in Downey, California provides opportunities for people to share their experiences. A former gang member who was paralyzed by a gunshot wound, Juan Garibay signed up as a volunteer peer mentor and now serves as the Program Manager for the Rancho Violence Recovery and Prevention Program. He explains, “We connect individuals and family members to services and resources that are going to help them improve their quality of life.”

Others know exactly how vital peer support can be from their own experience. When Kimberly Hill’s 15-year-old son sustained a SCI nine years ago, she felt she needed a mom with lived experience she could talk to. “There’s so much that you’re dealing with: ‘What do I apply for? Who do I turn to for help? What is a spinal cord injury? What is all this terminology?’” Kimberly, now the Executive Director of the Louisiana Chapter of United Spinal Association, recalls. “Having that support could have provided a little bit of guidance and provided me with a safe person to turn to or call and cry.”

She leads a program that connects people with SCI across Louisiana and their caregivers to peer mentors: “We have been able to identify ambassadors in the different regions of our state to act as liaisons to help grow knowledge and build connections. Neilsen Foundation funding has helped us serve a huge need in caregiver peer mentoring that has recently been identified by our organization.”

$10 Million in Research Funding Announced

August 15, 2023

The Craig H. Neilsen Foundation is proud to announce its Spinal Cord Injury on the Translational Spectrum (SCIRTS) portfolio is awarding $10 million in new grants. When the Foundation began its grantmaking in 2003, it awarded one research grant totaling $200,000. Twenty years later, it has awarded a total of 519 SCIRTS grants, amounting to more than $148.5 million in research support.

Smiling woman, wearing a gray sweater, at work in a scientific facility at Duke University
Casey Steadman, a postdoctoral associate at Duke University

The SCIRTS portfolio encourages creativity and leadership in the field of spinal cord injury (SCI) research in three categories. It supports early career Postdoctoral Fellowships, as well as Pilot Research Grants that enable junior or established scientists to test procedures and collect data needed to initiate larger, more conclusive studies and clinical trials, and Senior Research Grants, which support and encourage new thinking in SCI treatments.

In the early years of the portfolio, many of the proposals we received reflected the field’s focus on cells and regeneration. Over time, researchers have heard the voice of people with lived experience and our support has evolved to include more funding for work related to issues and activities that impact the daily life of people with SCI. Studies aimed at pain relief and improving the function of organ systems throughout the body are now as common as those aimed at restoring movement or sensation.

By understanding the needs of people living with SCI and expanding our partnerships, the hope is we can develop solutions to alleviate dysfunction and improve an individual’s quality of life. Our grantee partners are finding creative new ways of thinking about and understanding how the spinal cord’s systems change after injury. Translating that new knowledge into improved medical approaches is the ultimate goal.

A third of the funded projects in 2023 are continuing work using electrical stimulation, either directly or in combination with other therapies. This research is helping scientists develop treatments for the many secondary conditions connected to SCI, including breathing, bowel, bladder, and cardiovascular issues. Other researchers are pursuing ways to protect or repair the nerves in the spinal cord following an injury. These involve efforts to understand how the damage in the cord happens and determine how specific therapies could prevent or reverse that damage to improve recovery.

A point of pride for the Neilsen Foundation’s staff is the steady stream of applications for our Postdoctoral Fellowships because today’s postdocs are tomorrow’s leaders in the field. Postdocs supported by our grants have more than double the national average of placement in research faculty positions. Some of these professors, who started their careers with a SCIRTS Postdoctoral Fellowship, have become inspiring mentors and pioneers, making breakthroughs in SCI research, and encouraging the next generation of scientists to rethink what’s possible.

We All Need to Step up in a Crisis

Partnership with our grantees means providing clear funding guidelines, open communications, and decision making that is rooted in our mission, vision, and values. It also means that, in times of crisis, we must be proactive and flexible, responding to the immediate needs of the spinal cord injury (SCI) community. This was inspired by our Founder, Craig H. Neilsen, and the work we do today is driven by the values important to him during his lifetime.

A group of facemask-wearing people in wheelchairs sit in front of a red pick-up truck. loaded with wheelchairs for those in need
Southern Arizona Adaptive Sports launched Project Renew during the pandemic

It can be difficult for organizations to shift the way they do things but, because disaster can strike at any moment, we need to be ready to help those in need. Every catastrophe creates challenges for daily life and disruption of operations for organizations that serve the community, and people with disabilities often face the greatest risk. In addition to engaging with organizations to help support relief and recovery efforts, collaborating with grantee partners has been an effective strategy to help prepare the SCI community and deploy resources.

After the 2013 Boston Marathon bombing, we considered what the Neilsen Foundation was uniquely positioned to do. That meant not only supporting immediate medical needs, but also partnering with dedicated clinicians to track the long-term psychiatric complications and quality of life of survivors. This research was shared with a network of hospitals to help prepare staff for future events. Building on the partnerships with community foundations in the wake of hurricanes in Texas and wildfires in California, we partnered with Team Rubicon to learn from their expertise in disaster response and recovery efforts.

Forging these partnerships informed our thinking when COVID hit. As the world went into lockdown, we reached out to hundreds of grantee partners and launched Pandemic Relief grants. Our Board of Directors made $10 million available to deploy quickly to organizations ready to provide food, personal protective supplies, and other necessities to the SCI community, as well as vital support services. We also supplemented grants to research institutions during the shutdown to help them keep staffing in place and ensure studies could be completed.

Ensuring the needs of the SCI community are met remains our top priority. We established an ongoing partnership with the United Spinal Association because they were better positioned and had an infrastructure to do what we could not—provide relief directly to individuals living with SCI. This collaboration takes the ongoing management of disaster relief—something outside the Foundation’s typical programming—and gives United Spinal’s leaders and chapters the capacity to respond to the needs of their members when disaster strikes.

Most recently, a partnership with the American Spinal Injury Association (ASIA) helped both of our organizations think outside the box to assist a World Health Organization/United Nations mission in Ukraine. Dr. Andrei Krassioukov spearheaded this ASIA initiative to translate medical information so that local doctors and medical volunteers could be taught how to care for the growing number of people with SCI.

It is imperative for all of us to help others in need, even if it means stepping away from traditional ways of operating. When disaster strikes, we must work to stretch our limits and partner with experts who can provide the best solutions for recovery and ongoing relief. We encourage others to envision how they can step up in a crisis.

Everyone Deserves Opportunities to Thrive

July 17, 2023

Every person with a spinal cord injury tells a different story about their initially overwhelming experience and how they learned to thrive. Those early weeks, post-injury, can be scary, frustrating, and tough, but the adversity can drive some to become advocates and mentors, empowering others to view their lives with fresh inspiration. Regardless of a person’s age, gender, or socioeconomic status, it should be possible—and easier—to find organizations dedicated to providing resources, guidance, activities, and paths to employment and education. The Neilsen Foundation partners with organizations that provide services and programs that help people as they learn about and evolve their new normal to live life with a spinal cord injury (SCI) to its fullest.

Sometimes it can feel like a fight to get the resources that we’d all assume are in place to support people and families following a traumatic injury, but there is support available. In addition to care coordinators helping the newly injured get the medical support they need, mentors with lived experience can share how they have overcome their own struggles, provide resources and tips on returning to life at home and in the community, and offer guidance through difficult times.

A man in a wheelchair smiles as he uses a modified ramp outside him home
Triumph Foundation improves accessibility with small home modifications

Through the Creating Opportunity & Independence portfolio, the Neilsen Foundation makes grants to organizations that provide financial assistance, housing modifications, job skills training, as well as opportunities to reintegrate into one’s community through arts, sports, and recreational programming. The Neilsen Scholarship Program partners with 17 academic institutions, both community colleges and four-year degree programs, to aid students who want to live out their education dreams, often away from home for the first time. Because these programs don’t solve all of the difficulties people face, the Psychosocial Research portfolio funds studies to identify unresolved issues and find new strategies to enhance coping and participation after SCI. Some of this research focuses specifically on disability justice and socioeconomic disparities that limit access to activities and community support for people living with SCI.

Denise Fyffe, the Director of the Health Equity in Disability and Outcomes Research Laboratory at the Kessler Foundation, is hopeful this research will lead to “a better tomorrow” for many low-income, underinsured people with SCI. “One of the studies we are doing, looking at socioeconomic benefits post-injury, has described some of the challenges individuals with SCI face,” she says. “We developed an early intervention program that gets people thinking about employment at the time they’re in the hospital… We have a Vocational Resource Facilitator, who is talking to newly injured individuals about starting or getting back to a career.”

The Rochester Spinal Association has used Foundation support to add a care coordinator to improve the health, wellness, and community integration for people with SCI. Executive Director Chris Hilderbrant explains, “When you have lower socioeconomic status, you just have fewer resources to get by on. In a community where a lot of people may not have graduated high school, some of the concepts around spinal cord injury are just hard to understand. If you don’t have a frame of reference, it puts you at that much more of a disadvantage to understand your own health needs. The support of a coordinator is a huge help.”

A person’s status in society should not limit their opportunities to thrive after a traumatic injury. Through our grantee partners, we want to encourage individuals with SCI to pay forward any help and support they get by taking the information they receive and their experiences and sharing them with the newly injured as counselors and peer mentors. To achieve its mission, the Neilsen Foundation relies on organizations committed to helping these individuals find the best resources, aid, and care.