Inclusive design is more than adding ramps or meeting accessibility standards—it’s about who gets to make the decisions about accessibility. It ensures that those who experience exclusion, such as people with spinal cord injury (SCI) are actively shaping the spaces, systems, and innovations that impact their lives. True inclusion not only removes barriers but also expands opportunities, creating pathways for greater participation and equity.

The most effective solutions emerge when lived experience leads the way. Our grantee partners demonstrate that true inclusion happens when people with SCI are engaged in decision making, problem solving, and innovation.

While universal design strives to create environments that work for as many people as possible, when inclusivity is embedded in the process from the start, it has a more significant impact. By engaging people with SCI directly in the design process, inclusive design helps refine and enhance universal solutions, ensuring they are meaningful in real-world contexts.

Creating Inclusive Community Spaces

Public spaces, fitness centers, and recreational programs often claim to be accessible, but who defines what that means? A space may have designated accessible parking, but if essential signage lacks braille or audio options, or elevators have controls that require fine motor skills is it truly inclusive?

Some of our grantee partners are working directly with city parks, rehabilitation centers, adaptive sports programs, and other community spaces to ensure accessibility is practical, not just present. This means:

• Involving people with a disability in the design of fitness equipment so it meets different body mechanics and needs.
• Training staff at YMCAs and gyms to support adaptive athletes.
• Redesigning outdoor areas like piers and parks based on input from wheelchair users with SCI—because a pathway is only accessible if it leads somewhere meaningful.
• Including audio wayfinding or braille.

One example of this work is a grantee partner’s project to improve access to Great Lakes fishing by redesigning a public pier with lowered fishing railings, shaded rest areas, and accessible seating options. These changes ensure that everyone can fish comfortably anywhere in the park, rather than being restricted to designated areas. This approach highlights how thoughtful, user-driven design transforms accessibility from a technical or legal requirement into a meaningful experience.

Removing physical barriers is just the start. True inclusion means designing for full engagement, where people aren’t just accommodated but are actively shaping their environments.

Accessibility in Healthcare

Accessibility continues to improve in healthcare, but fully integrating the patient’s experience remains a work in progress. Exam tables that are too high, rooms that don’t accommodate mobility devices, lighting that heightens visual impairments, and medical providers untrained in disability-specific care can all create barriers to quality care. These barriers can lead to delays or denials of essential services, often affecting underrepresented groups the most, contributing to disparities in health outcomes.

Preventive healthcare plays a vital role in reducing long-term health risks and supporting independence. One grantee partner is investigating these disparities, examining how factors like income, location, and race/ethnicity affect access to preventive services such as dental and vision care. Their early findings reveal key accessibility challenges, including:

• Lack of transfer equipment in exam rooms.
• Limited accessible parking at healthcare facilities.
• Providers unprepared to address the complex care that often accompanies living with a disability.

Most healthcare research focuses on primary care, but this project highlights how preventive services are often overlooked. More than one-third of participants reported being turned away from a provider due to accessibility issues, underscoring the need for healthcare environments to adopt universal design principles from the start. Addressing these challenges goes beyond adding more services; it requires additional medical training, access to adaptive devices, ensuring healthcare spaces meet diverse needs, and eliminating systemic barriers. True inclusion in healthcare involves people with disabilities in the decisions that shape their care, leading to more responsive, proactive, and inclusive systems that support long-term health and independence.

Strengthening Inclusion Through SCI Research

Scientific advancements in SCI care often claim to prioritize inclusion, but who determines what problems research should address? Too often, studies have focused on the SCI experience from an outside perspective, without fully integrating the voices of those actually living with it.

The North American Spinal Cord Injury Consortium (NASCIC) is trying to change this. As a grantee partner, they developed a course that trains individuals with SCI to actively participate in the design of research projects. Instead of researchers determining what questions matter on their own, this initiative aims to train people with lived experience in how to participate in the development and conduct of a research study so that they can share their experience and heighten the potential for impact.

The NASCIC course is a 12-module program created with input from over 100 individuals from the SCI community, including researchers, advocates, and people with lived experience. It provides:

• Training on how to engage in SCI research as partners rather than passive participants.
• Tools for advocacy, helping individuals with SCI ensure their voices are heard in scientific discussions.
• Stronger community connections, building networks between researchers and the people most impacted by their work.

By involving individuals with SCI in shaping research, we ensure that advancements address real-world priorities and lead to practical solutions that enhance quality of life.

Who Shapes the Future of Accessibility and Inclusion?

True inclusion isn’t just about meeting standards; it’s about ensuring that people with a disability have a voice in shaping the spaces, systems, and innovations that affect them. When individuals with lived experience take an active role in these decisions, accessibility shifts from a set of guidelines to a lived reality that reflects their practical needs and everyday experiences.

Our grantee partners demonstrate that inclusion isn’t a checkbox; it’s a process shaped by those with real-world insight. By centering their expertise, we move beyond accommodation and toward true equity—where people don’t just navigate spaces but actively shape them.

Misconceptions about spinal cord injury (SCI) are pervasive, often oversimplifying or distorting the realities of life with SCI. These misunderstandings fail to reflect the vibrant, dynamic lives individuals with SCI lead. At the Craig H. Neilsen Foundation, we recognize the importance of creativity—one of our core values—in addressing these assumptions and advancing innovative solutions in both research and programming. Together with our grantee partners, we’re not just breaking down outdated ideas; we’re showcasing how creativity drives meaningful change for the SCI community.

One common misunderstanding is that people with SCI are solely focused on walking again. While mobility can be a significant goal for many—and some individuals with SCI retain the ability to stand or walk to varying degrees—individuals with SCI have diverse priorities that go far beyond physical rehabilitation. Building strong families, managing health like bowel and bladder care, advancing in their careers, and pursuing education are significant aspects of one’s quality of life. For instance, one grantee partner developed a program focused on workforce inclusion and is addressing barriers to employment by offering job readiness training, mock interviews, resume assistance, and job placement support. Participants leave not only with the tools they need to secure employment but also with greater independence, stronger community connections, and the ability to pursue fulfilling careers. This kind of impact reflects the breadth of goals within the SCI community and the creative ways grantees are helping individuals achieve them.

Another misconception suggests that certain activities are just not possible for individuals with SCI. However, adaptive programs have repeatedly demonstrated that access, not ability, is often the deciding factor. Through scientific advancements, specialized equipment, and supportive environments, individuals with SCI participate in activities like surfing and skiing as well as other high-energy pursuits. By embracing the opportunity to challenge assumptions about what’s achievable, they take themselves and others beyond perceived barriers. As an example, adaptive surfing programs equip participants with customized boards and expert guidance, ensuring both safety and inclusion. These initiatives aren’t just about recreation—they’re about restoring confidence, fostering community, and proving that inclusion isn’t just possible, it’s necessary. When individuals with SCI have an opportunity to participate fully, not only do their lives change—it allows perceptions to shift, barriers to fall, and a more equitable world to take shape.

As the program leader from Life Rolls On Foundation described, “It has allowed us to provide more people with SCI a platform not only to surf and do something they may have never thought was possible, but we also provide a safe and comfortable environment to interact with other SCI people, helping to create long-lasting friendships and boosting self-esteem. The impact is truly amazing and priceless. You can witness transformation and see the smiles it puts on these people’s faces.”

While creative adaptations continue to expand what’s possible, it’s important to acknowledge that systemic barriers persist. A world not designed with SCI in mind still limits participation, often due to inaccessible infrastructure or exclusive environments. Addressing these challenges requires creativity not only in designing programs but also in rethinking how spaces, activities, and systems can be more inclusive. At the same time, individuals with SCI often demonstrate remarkable ingenuity, finding alternative ways to achieve their goals using the tools and resources available to them. This resourcefulness highlights the resilience and creativity of the SCI community and the need for proactive, inclusive design that minimizes barriers rather than requiring workarounds.

At the Craig H. Neilsen Foundation, we see firsthand how the SCI community rethinks its limits every day. The work of our grantee partners not only challenges myths but also builds a future where individuals with SCI are empowered to pursue their ambitions—on their terms. By shedding light on these stories, we aim to create a more informed, inclusive, and equitable world.

At its core, representation is about access—not just to being seen, but to contributing, expressing, and creating. For individuals living with spinal cord injury (SCI), breaking into media and entertainment represents more than an opportunity to tell authentic human stories. It’s about accessing the creative space to shape narratives, showcase talents, and connect with audiences in ways that redefine outdated perspectives.

Progress like this is vital, especially considering how far representation still has to go. A study by Nielsen Media Company revealed that only 4% of top TV shows in 2021 featured characters with disabilities, despite 26% of the U.S. population identifying as having a disability. The Craig H. Neilsen Foundation is proud to support grantee partners working to close this gap. By addressing barriers, advocating for accessibility, and creating equitable hiring pathways, they are expanding opportunities for people with SCI to thrive in all facets of media.

The recent success of Wicked, highlights the growing recognition of authentic disability representation. Marissa Bode, an actress with SCI who uses a wheelchair due to an injury sustained at age 11, portrays Nessarose—a character who uses a wheelchair—in the film. This casting choice marks a significant milestone, as Bode is the first actor with SCI to bring this decades-old character to life. “I love seeing disabled characters be played authentically by real disabled people because no one knows us better than us,” Bode told The New York Times.

Representation on screen is significant, but just as important are the opportunities behind the scenes. One of our grantee partners established Hollywood Working Groups for People with SCI, and is hosting workshops and webinars for studios, creating pathways for internships and jobs, and advocating for accessible production spaces. Actor Danny Gomez, who lives with a SCI and worked with grantee partner RespectAbility, highlighted the challenges of accessibility on set: ‘While on set for a commercial, I was unable to find an accessible restroom. All the other actors on set had access to a bathroom and trailers, but the company who decided to shoot didn’t even consider the needs of someone with a disability,’ he revealed. Another grantee partner renovated a historic theater to include elevators, ADA-compliant restrooms, and accessible dressing rooms, ensuring every creative—actors, directors, or crew members—can participate fully in their craft. Representation in media is about creating meaningful opportunities for people with SCI to contribute their talents and perspectives as storytellers, innovators, and leaders whose voices enrich the narratives we share.

The Neilsen Foundation remains committed to supporting initiatives that amplify the talents of individuals with SCI. By ensuring access to inclusive spaces, resources, and pathways to participation, we are building a future where creativity knows no bounds and everyone has the opportunity to have their story be told.

The journey after a spinal cord injury (SCI) often involves significant life adjustments. Relationships shift, careers take unexpected turns, and daily routines become unfamiliar terrain. But these changes don’t define a person—they reveal their capacity for growth, resilience, and creativity.

Mental health plays a crucial role in this process, shaping how individuals adapt and thrive. Through community support, innovative clinical care, and groundbreaking research, our grantee partners are helping individuals shape their story. Together, we’re proving that while the journey after SCI can be a challenge, it’s also filled with possibility.

Building Connections Through Community

Social connection is a cornerstone of mental health, and for people with SCI, community-based programs can be transformative. Peer-led support groups create space for individuals to share experiences, build friendships, and navigate their journeys with others who truly understand.

One powerful example comes from a peer support group where a woman joined her first group outing—a simple trip to a pizza parlor. For the first time since her injury, she ventured out without family or caregiver support. That small milestone sparked newfound confidence, and a week later, she voted independently for the first time in years. This story highlights the profound impact of creating opportunities for connection and independence.

Beyond support groups, programs like art therapy and adaptive sports are helping individuals reconnect with their passions, express themselves, and rebuild their confidence. These initiatives are about more than just activities—they foster mental wellbeing, restore a sense of agency, and build pathways for personal and social growth.

Bridging Care and Independence in Clinical Settings

When it comes to medical care, mental health support plays a critical role, particularly for newly injured SCI patients navigating the transition from inpatient rehabilitation to community living. For many, moving from the structured environment of a hospital to the unpredictability of home life can be overwhelming. Rehabilitation centers often focus on teaching self-care skills, but the realities of implementing those routines at home—where circumstances vary widely—require additional support.

Our partners are exploring innovative ways to ease this transition. For example, some healthcare providers are integrating mental health check-ins as part of follow-up care after discharge. These check-ins allow individuals to discuss emotional challenges they may be facing, from grief over changes in their lifestyle to anxiety about managing new responsibilities. Telehealth has become a key tool in extending these services to individuals who may not live near specialized clinics, providing a lifeline of support without requiring extensive travel. It is important to note that, although access to these services still presents significant obstacles for some, the challenges decline when communities embrace the responsibility for sharing information about newer approaches.

Some grantees have explored the concept of a team-based approach, emphasizing the importance of aligning a patient’s entire care network—including caregivers, therapists, and doctors—in supporting the person’s mental health journey. This ecosystem of care fosters a sense of stability and trust, helping people with SCI adapt to their new circumstances with confidence.

Tailoring Mental Health Support Through Research

Research continues to illuminate the critical relationship between mental health and quality of life for people with SCI. One particularly impactful tool is the Spinal Cord Injury Quality of Life (SCI-QOL) measurement system, which gives people ways to describe their mental health and concerns, has transformed how we understand the nuanced challenges faced by people living with SCI. Initially developed with funding by the National Institutes of Health and enhanced through the work of our grantee partners with Neilsen Foundation support, SCI-QOL has become widely used in research and care. Today, it is helping professionals capture and address the real-world experiences of the SCI community.

What makes SCI-QOL significant?

• This system evaluates key aspects of life, such as social participation, emotional wellbeing, and physical health, with a specific focus on the SCI population.
• The tool allows for personalized insights, such as assessing specific areas like anxiety or depression, depending on what is most relevant to the individual.
• It provides a comprehensive view that enables researchers and caregivers to identify where targeted support can make the greatest difference.

Recent research supported by the Neilsen Foundation is delving into mental health issues that have long been overlooked in the SCI community. For instance, grantees have explored the unique challenges faced by LGBTQ individuals with SCI, uncovering how social exclusion and stigma contribute to feelings of isolation and vulnerability. Participants emphasized the critical role of supportive systems and the need for healthcare providers to better understand LGBTQ-specific concerns. Similarly, new research is shedding light on women’s health, examining mental and physical challenges during pregnancy and the transition to menopause—areas previously underexplored in the SCI population. These studies are paving the way for more inclusive care and tailored support, addressing the diversity of experiences within the community.

Moving Forward Together

As we welcome a new year, the Neilsen Foundation reflects on the collective strength within the SCI community. Through the transformative work of our partners, we continue to witness the power of creativity, connection, and unwavering commitment to improving lives. Mental health is not just an individual endeavor; it is a shared journey, one that thrives on collaboration and a deep understanding of what it means to adapt and grow. Together, we look forward to a year filled with progress, possibilities, and hope—a future where people with SCI have the support they need to lead independent, fulfilling lives.

Want to learn more about programs and research shaping the future of mental health in SCI? Visit chnfoundation.org/news/ to explore additional stories, resources, and insights.

What a year. I try to bounce back and recover from the challenges life presents. Resilience can help us manage emotions, overcome serious hardships, and think of challenges as opportunities to learn and grow. Yet, there are times in our lives when this feels more difficult than others. Our health, family, community and, yes, politics, can create stressful situations, often making solutions feel out of reach. However, despite the seemingly all-consuming negativity surrounding us, we have the ability to hold ourselves accountable to a higher standard and ask ourselves, now more than ever, “how can I help?”

This mindset is at the heart of the Craig H. Neilsen Foundation’s work. Serving the community and supporting the efforts of those who seek to improve the lives of individuals living with spinal cord injury (SCI) is core to the Neilsen Foundation’s mission. This commitment is unwavering and demands reflection, requiring us to continually seek solutions that serve our constituents more effectively.

Over the years, the relationships we’ve built in the scientific, philanthropic, and nonprofit communities, have shaped our understanding of the role we can play helping others bring their aspirations to fruition. Collaborating with these partners has strengthened our understanding of how to facilitate growth, as an organization and as people, and continues to drive the evolution in how we serve. We find inspiration in the inventive ways researchers try to solve problems as well as the energy of grassroots organizations who hit their capacity, only to then develop ways to expand their services and further benefit their communities.

Our job is to support our grantee partners by giving them some of the tools they need to get things done. Sometimes support comes through funding but, support can also come by just talking through what someone needs. We know that the polarized world around us impacts grassroots, nonprofits, and academic institutions that are already under great pressure to fill gaps in both services and scientific innovation. We must trust our communities, broaden our thinking, and find creative ways to move forward toward our goals.

How can we expect individuals at organizations, who are already giving so much of themselves, to give more? I see the frustration and the fear that differing opinions might hinder progress. Colleagues have shared concerns that our collective ability to work collaboratively is withering, not growing. In both the scientific and nonprofit world, the worry about what might happen has always been there, but we can’t be stopped by the “what if?” Now is the time for meaningful dialogue—an opportunity to remain steadfast in our values while being open to new ways of working together.

The ability to transform people’s lives is a truly humbling challenge that keeps things in perspective and motivates me to maintain a positive outlook. It feeds my resiliency as well as my desire to be of service. I encourage you to nurture your own resilience, strengthen the will to accept change, and, in the process, find your own answer to how you can help.

Listening to different perspectives on how to be of service can often create an opportunity to recenter thinking—to look beyond yourself and focus your energy towards a greater good. Imagine the solutions that could be uncovered if we open ourselves up and explore options outside our comfort zone. As I reflect on the shared progress of the thousands of grantee partners who give of themselves and use Neilsen Foundation support to improve the world for people living with SCI, I am in awe. From all of us at the Craig H. Neilsen Foundation, have a safe holiday season and I hope you continue to find moments of joy.

All my best,

Kym Eisner, Executive Director

To thrive in an ever-changing environment, we need to evolve—as individuals and as organizations—to face the challenges ahead. We do this by building on past successes, using newly developed tools to the best of our ability, and forging partnerships with those who share our values and goals.

The Neilsen Foundation has seen this evolution in the research world. Scientists who once focused narrowly on cells of the nervous system are now expanding their work to ensure it is relevant to solving the wide array of complications faced by people with spinal cord injury (SCI). Our researchers are increasingly collaborative, not only partnering with experts from other disciplines, but also integrating people with lived experience into their teams to gain insight about life with SCI. Including the voices of the SCI community helps researchers prioritize the most pertinent issues and carry out their studies with the community’s needs in mind.

When we began to fund research over 20 years ago, many studies sought to answer basic questions about whether nerve cells in the spinal cord could regenerate or be repaired. While these foundational questions are still important, improving people’s quality of life and translating good science into clinical reality has become our main focus. Surveys have shown that most people want new ways to treat the effects SCI has on functions such as bowel, bladder, and blood pressure control. As a result, the number of grants we fund in these areas has increased substantially to better align with community needs.

One area that has seen huge expansion is the use of electrical stimulation of spinal nerves to restore function. Our grantee partners are testing a variety of devices that send electrical pulses into the spinal cord, trying to regulate heart rate, blood pressure, respiration, digestion, and sexual function, as well as bowel and bladder control. Importantly, these studies have evolved beyond asking whether the devices produce physical results. Now, researchers are examining how usable these devices are for people, ensuring they work in real-world settings.

SCI impacts nearly every system in the body, so it’s clear that no single approach can address everything. To apply a combination of therapies, a study must consider not only how each component works, but also how it affects the others. In the real world, the treatment also must work in the context of all other medications and devices people with SCI already use. Incorporating these ideas and integrating rehabilitation into animal testing has required a real evolution in thinking about therapy development.

The ways in which research results are communicated have also been changing. It’s no longer enough to publish findings in a scientific journal—there’s an increasing push for data sharing to promote collaboration and transparency. This practice allows researchers to revisit and combine datasets to ask deeper questions and potentially speed up progress. Emerging approaches such as Artificial Intelligence (AI) are beginning to be incorporated to analyze data, recognize patterns, and help make predictions. AI is at an early stage but may ultimately play a role that could lead to better clinical decision-making and more effective therapies.

Our journey forward is one of continuous learning, collaboration, and innovation. By listening to the voices of individuals living with SCI and embracing new ideas and technologies, we have the opportunity to transform lives. That is what success looks like.

We are thrilled to announce Jennifer French as the recipient of the 2024 Craig H. Neilsen Visionary Prize. This prestigious award honors individuals whose innovative work and dedication have significantly improved the quality of life for people living with spinal cord injury (SCI). Jennifer’s contributions to the SCI community exemplify the pioneering spirit and commitment that Craig H. Neilsen championed throughout his life. The Visionary Prize, accompanied by an unrestricted $1 million award, highlights her remarkable achievements and ongoing impact. The Visionary Prize honors Craig H. Neilsen’s relentless drive and commitment by recognizing individuals who embody his values of determination, innovation, and the ability to inspire others.

This year, as we honor Jennifer, Founder and Executive Director of the Neurotech Network, she has dedicated her life to advancing neurotechnology and improving the quality of life for people with SCI. After a snowboarding accident in 1998 left her paralyzed from the chest down, Jennifer refused to accept the limitations imposed on her. She participated in a clinical trial for an implanted device that stimulates her hip and leg muscles, enabling her to stand. Her determination not only helped her be upright under her own power but also advanced the technology for thousands of other potential recipients, including injured soldiers returning from war.

In her TED Talk, Jennifer emphasized the profound impact of technology, stating, “Enabling technologies like implanted devices and some very savvy external ones give people with disabilities the ability to partake in activities that they never were able to do before or that they miss so much. So, at the end of the day, it all comes down to how we treat each other as people, how we treat each other as human beings.” Her passion for inclusion and technological advancement shines through in her public speaking engagements, where she has inspired audiences at the National Academy of Sciences, the National Institutes of Health, and various TEDx events.

Jennifer’s influence extends beyond the technological realm. As an accomplished athlete, she won a silver medal in sailing for Team U.S.A. at the 2012 Paralympic Games in London. She co-founded the Warrior Sailing Program, providing wounded veterans with the opportunity to experience the freedom and empowerment that sailing offers. Jennifer’s efforts have significantly advanced the inclusion of people with disabilities in various fields, earning her the title of U.S. Sailing’s Rolex Yachtswoman of the Year. She has also been an outspoken advocate for engineering innovations to help people with spinal cord injuries, ensuring their voices are included within the research community.

The Craig H. Neilsen Foundation is honored to recognize Jennifer French for her tireless efforts and remarkable contributions. Her visionary leadership and unwavering commitment to improving the lives of those with SCI make her a deserving recipient of this year’s Visionary Prize. We look forward to witnessing her continued impact and supporting her future endeavors in transforming the landscape of spinal cord injury care and technology.

Discover the inspiring stories of our past Visionary Prize winners and their groundbreaking contributions to the SCI community here.