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.

As the academic year commences, the Craig H. Neilsen Foundation is awarding $3.7 million to our partner colleges and universities across the country in support of 26 students with spinal cord injury (SCI) on their higher education journeys. These scholarships include tuition and fees, plus supplemental support aiming to eliminate barriers to students’ education such as costs associated with accessible housing, assistive technology, and transportation.

To foster our Founder’s belief in the importance of access to education, the Neilsen Scholarship Program (NSP) has supported academic institutions who strive to make their campus accessible to students with SCI since 2014. It began with eight schools and has evolved to comprise 17 partner institutions that include a wide range of colleges and universities serving various student populations.

In total, the Foundation has provided scholarships for 301 students with SCI since its inception, supporting Neilsen Scholars who have completed academic programs that range from Associate’s degrees to Doctorates. We are thrilled for all of the graduates and are proud to showcase many of them on our “Meet the Graduates” page. One graduate, Adam Booker from the University of Alabama at Tuscaloosa, shared his experience, saying, “With a graduate-level degree, one that I achieved because of this Scholarship, I have the freedom to pursue a career in my period of focus, and that is a freedom unlike any other.”

Access to education for students with disabilities is imperative to the progress of inclusion. Higher education enriches lives by introducing students to a wider world and opening doors to new opportunities. As it is often the first time living away from home, the transition to college life is especially challenging for students with disabilities. Accessible housing, campuses, transportation, and necessary assistance are critical to their success—along with social acceptance and a campus-wide culture that says, “all are welcome.” This inclusive environment not only supports students with disabilities but also enriches the entire campus community.

Ensuring the success of Neilsen Scholars and other students with disabilities takes a team of offices and people on campus. Disability services offices play a large role in the success of NSP on each institution’s campus. To promote the Foundation’s value of inclusion and support these responsibilities, we also provide grants that fund general support for the institution’s disability services office. These dollars have been used to provide programming for students with disabilities and to create greater accessibility of physical spaces for students, which furthers the culture of inclusion and accessibility on campus.

Our partner institutions actively exchange ideas and collaborate with Neilsen Foundation staff to facilitate NSP activities on their respective campuses. They promote this scholarship opportunity, recruit students with SCI, evaluate access for students, facilitate partnerships with local organizations who support the SCI community, and support students for the duration of their education. We are grateful to our partner institutions for their commitment to our Neilsen Scholars.

To learn more about our partner institutions and connect with them, use the logos on the NSP page of our website.

The Neilsen Foundation has supported research focused on spinal cord injury since its inception. We have funded a wide range of research over the years, including studies to establish a new understanding of the injuries as well as those that are advancing treatments that will improve lives. For 2024, we are proud to announce that a group of 26 grants have been selected for funding, totaling almost $10 million in the Spinal Cord Injury Research on the Translational Spectrum (SCIRTS) portfolio.

Many topics will be studied, all directed toward improving quality of life for people living with spinal cord injury (SCI). Some projects look at restoring movements, such as walking or hand function, as well as responses to touch or reducing pain. Others focus on improving breathing, balance, or cardiovascular health. Hearing the daily needs of people living with SCI, we are particularly pleased that nearly one-third of the new grants pay close attention to bladder and bowel function. These are issues that directly impact a person’s dignity as well as their health, so the goals of this work range from improving continence, stimulating urination and bowel movements, as well as preventing urinary tract infections.

Research in the SCIRTS portfolio is generally about how cells, organs, and behaviors are affected by SCI or how these body parts or activities respond to therapeutic strategies. Those strategies might be drugs, cellular therapies, electrical stimulation, or rehabilitation. Most importantly, these approaches are being tested in combination, which is often how people experience therapy in stages of their recovery.

Previously, studies were designed to ask questions about only one therapy at a time to understand if it had a reliable benefit, but that is not how patients receive care. It is now recognized that it can be important to test different types of therapy simultaneously.  Rehab works together with medicines and the other types of treatment to stimulate nerve activity and growth, so they are being tested together and showing results that are greater than the sum of the parts.

SCI is generally described as the loss of signals from the brain to the body that control movement and other functions, but the effects of this profound injury are really in both directions. Injuries to the spinal cord block messages from the body to the brain, and the brain itself changes in response. Researchers are now looking more closely at mental experiences of people after SCI and the source of these changes, including both pain syndromes and cognitive function.

New SCIRTS grantees are exploring how damage within the spinal cord affects the health and function of cells in the brain that control our experience of discomfort, depression, awareness, and memory. Their focus is on the biological underpinnings of these psychological experiences. This complements the Neilsen Foundation’s Psychosocial Research grants, which conduct studies that ask about people’s experiences after SCI and test behavioral therapies in clinical and community settings.

More than ever, SCIRTS researchers are building upon historic progress to test the most promising approaches. This search for knowledge is the process by which treatments of the future can be designed, moved ahead to clinical trials, and ultimately become part of a standard doctors visit to improve the quality of care and overall health for people after SCI.

Learn more about our SCIRTS application process and funding opportunities here.

Including a variety of voices and viewpoints in research improves the quality and impact of the questions being asked. Diversity encourages innovative problem solving. Traditionally; however, many groups have faced barriers to participation in scientific work, some physical, stereotypical, and/or structural. People from ethnic minorities as well as the disability community need to be included as essential collaborators in the scientific workforce.

This is partly due to a phenomenon, often called a “leaky pipeline,” where people from these groups drop out of the field at each career transition point—when moving from undergraduate to graduate, to postdoctoral, with very few staying in the field all the way to faculty positions. Despite their interest in science, and their abilities, when trainees from these underrepresented groups lack encouragement, support, and the opportunity to see themselves in their mentors, they give up their career dreams more often than those who seem to fit the image of what a scientist “looks like.”

Being committed to the value of promoting inclusion and, by doing so, increasing consideration of diverse perspectives, the Neilsen Foundation is working to address some of these barriers and develop ways to overcome them. Our Research Inclusion Supplements provide additional funds to grantee partners who bring students from underrepresented groups into their labs and introduce them to SCI-focused research projects. Through our Postdoctoral Fellowships, which provide training and mentorship to early career scientists, we support trainees with a diversity of viewpoints in making the most of this critical period in their career. By providing this funding to develop the next generation of SCI researchers and encourage a more representative workforce, we hope to plug some of the “leaks” in the career pipeline.

Research Inclusion Supplements are meant to encourage grantee partners to engage with undergraduate and graduate students from underrepresented populations to expose them to SCI research early in their education, which can have a profound impact on their career trajectory. These supplements are available to SCI researchers who are currently funded by the Neilsen Foundation with at least one year remaining on their grant. For the past two years, a wide variety of individuals from underrepresented groups have been recruited into laboratories and encouraged to get involved in SCI research.

All along the path to becoming a SCI researcher, training and mentoring are central components to an individual’s success. The trainees seeking a Postdoctoral Fellowship grant must present a formal training plan that their mentors help them create. Having these plans in mind from the beginning helps the mentee-mentor team to identify goals, set milestones, and manage expectations throughout the fellowship period. Over nearly two decades of funding Postdoctoral Fellowships, we have seen our former fellows excel in SCI research as creative scientists and leaders in the field.

There is nothing that can patch all of the leaks in science’s leaky pipeline, but we are working to provide young scientists the opportunity to experience and succeed in SCI research. By supporting trainees as they travel through their career path, we hope to increase the outflow of impactful research from that pipeline by stemming the loss of diverse talent along the way.

As the Craig H. Neilsen Foundation launches its second decade of Psychosocial Research funding, we are proud to announce that 10 new grants totaling $3.5 million are being funded in 2024. Psychosocial Research (PSR) covers a wide range of issues that affect the mental health of people living with a spinal cord injury (SCI), from moving out of the hospital back into the community, to gaining confidence in coping with challenges of daily life, to developing therapies that promote healthy living. Our grantee partners for this year will focus on ways to encourage physical activity and participation, as well as mental and physical health issues that impact the quality of life for people with SCI.

Some of our PSR grantees are studying mental health risks, such as depression, while others are looking at the experiences of people living with SCI to identify obstacles and motivational barriers to participation in activities of all kinds. Healthy behaviors that range from developing personalized plans to promote physical activity, to strategies for taking control over one’s healthcare needs, to enhancing programs with specific goals, such as quitting smoking, are all areas of interest. Two of our new grantees received Neilsen Foundation support during their postdoctoral training and are now leading their own research programs, an important next step for them as scientists and for the field of psychosocial research.

Regular exercise has a positive impact on overall physical and mental health so examining what motivates people to maintain a healthy and active lifestyle is important. Our grantee partners are studying the personal, environmental, and other barriers to physical activity and testing behavioral therapies that encourage healthy activities that best fit a person’s needs. Another significant health risk is smoking, which is more common among people with SCI than the general population. One researcher is asking what are the motivators as well as the barriers for people with SCI to giving up smoking, and what can healthcare providers do to help them quit?

Physical barriers are important obstacles to maintaining health after SCI. Some of the new grants being made will focus on access to clinics and examination rooms, ground and air transportation, and how to deal with complications related to SCI as they emerge. These studies are designed to explore the issues and develop new informational content created specifically for people with SCI. The research involves interviewing individuals with SCI to create a better understanding of what factors promote or hinder their ability to access care, transportation, etc., and tailor the informational sources to the needs of the end-users.

A practical example is one study that is looking in-depth at wheelchair breakdowns in diverse populations, recognizing that minority groups and people living in economically challenged areas have less access to affordable repair solutions. Without a functioning wheelchair, many people with SCI lose their independence and face being isolated in their homes. This study will document wheelchair breakdown and repair experiences and create an “action plan” to help individuals with SCI find resources. Other transportation studies focus on air travel and community transit options for people living with SCI. Their results will be used to develop new training for airline personnel and shared with local transit authorities to try to improve transportation standards within communities.

Psychosocial research is less familiar to most people than laboratory work to develop new drugs or surgical approaches aimed at repairing the spinal cord, but it gets directly to the needs of people living with SCI. It is work that requires close communication between researchers and people with lived experience, and a joint approach to developing new solutions. Neilsen Foundation grants are selected to give these projects support to define barriers that impact daily life and develop new approaches to overcoming them.