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.

Managing pain is one of the highest priorities for the spinal cord injury (SCI) community. When a person loses feeling in part of their body due to a SCI, they might not feel a touch or a pinch, but they may still experience severe and chronic pain in those areas. This kind of pain is the result of changes in the spinal nerves and how the brain interprets them. Scientists are working to understand why these changes create pain as a guide to developing more effective treatment options.

There are many approaches to pain relief. Available drugs help alleviate the pain for some, but they carry risks of side effects or addiction, and, unfortunately, many people with SCI have pain that is drug resistant. Other needed options are being studied, including the use of stem cell-derived grafts to silence pain messages within the spinal cord. These cellular therapies are still being tested only in laboratories, and so these potential solutions are on a longer-term horizon.

Other alternatives to drugs are part of combination treatments in rehabilitation. Exercise therapies and psychological treatments, like yoga and massage, are proving successful. So are some types of nerve stimulation. Hypnosis has been added to the mix, with people finding effective relief from a guided state of relaxation and calm. Scientists are now studying exactly how this helps reduce pain so they can better understand and incorporate hypnosis into therapy.

While these scientists have made strides, there is still much to be done. In addition to funding research to learn more about SCI pain and develop more effective treatments, the Neilsen Foundation also supports work that looks at the effect that chronic pain has on people’s lives and helps them understand and cope with it. Chronic pain impacts both physical and mental health. It can lead to—or worsen—depression, isolation, and anxiety issues that can thwart rehabilitation and progress, destroy hope, and lead to other health issues.

Psychosocial researchers and therapists are helping individuals with SCI and their caregivers learn to cope with pain, and keep it from interfering in an active, healthy lifestyle. Drawing from these studies, Neilsen Foundation grantee partners at the University of Miami have developed educational materials to better inform people about the pain they experience and make them aware of alternative methods of pain relief. New materials have also been developed to inform doctors about the experience of pain after SCI and how best to relieve and manage it. And research at Oakland University and the University of Minnesota is identifying how people with SCI convey their pain to their healthcare providers. The results will help create a shared decision-making tool that will address the needs of patients and their doctors.

Understanding chronic pain and seeking therapies that provide relief are critical. There are opportunities to think creatively, reexamine existing treatments, and we are eager to see new ideas yet to be presented. We are proud to continue with funding to grantee partners who help us to achieve our mission. These researchers are seeking the answers and breakthroughs that will bring comfort to those who need it most.

The Neilsen Scholarship Program (NSP) was built on values and ideals that were important to our Founder, Craig H. Neilsen. During his lifetime, Craig began assisting students living with spinal cord injury (SCI) who had a desire to attend college but may not have had the means to pay for tuition. He also wanted to help those students who struggled to cover the expenses associated with adaptive technology, personal care attendants, or other things they needed to help remove the barriers to a quality of life on campus.

When the NSP was launched, we had to develop a creative way to build support for students because the Neilsen Foundation does not make grants to individuals. The solution was to create partnerships with academic institutions that would identify and provide support to students with SCI on their campuses. These grants help underwrite the cost of tuition and fees, as well as providing supplemental support to offset other costly expenses related to living away from home. And, because attending classes might also include additional barriers for students with SCI, this support could include the personal care attendants and adaptive technology needed to fully participate.

To date, we have helped 273 students with SCI pursue their educational goals. Many of them have been inspired to take what the scholarship has given them and give back—creating their own ways of helping others. In that sense, the NSP has become a program that goes well beyond the Foundation and the schools we support.

But none of this would be possible without our partnership with the 17 academic institutions we now work with, including coordination between Disability Services and Financial Aid staff. To encourage discussion and shared planning, Neilsen Foundation staff host webinars that help everyone involved understand the needs of new generations of students with SCI. The schools have been willing to share information about what they’ve been able to do on their campus with other NSP partners and learning from each other’s experiences facilitates the development of practices that most benefit the students. This helps make a college education more accessible—not just in a physical sense—and benefits all students with a disability on the campus by enriching the institutional culture.

Normalizing interactions between able-bodied students and their peers with SCI in the classroom and around campus helps to lessen stigma about disability and boost inclusivity. Participating in adaptive athletics programs also helps students with SCI push their limits, highlight their abilities, and build their sense of school spirit. Many NSP graduates have raved about their experiences as college athletes, with some graduates having moved on to coaching positions to help others achieve an athletic dream. Students enjoyed campus life with the ability to focus on their education without the added financial burden. The NSP gave them all the confidence they needed to follow their educational goals.

To highlight what the students are doing post-graduation and acknowledge their accomplishments, last year we created a Graduates page on the Neilsen Foundation website. We asked them to share a memory of their time in college. Many are thriving, employed in their field of interest, and often striving to make a difference—just like Craig did during his life. One graduate is hoping to establish a scholarship program to help others struggling with the costs of college, while another has returned to the University of Alabama at Tuscaloosa to serve as a coach for the wheelchair tennis team. We are proud that our scholarship program and the institutional partners who help steward it have served as an inspiration for so many brilliant young minds.

How do you send the message to someone that you value their ideas, efforts, and vision? In a world where researchers, clinicians, and nonprofit leaders are constantly chasing the next grant, we set out to honor outstanding individuals who are at a mid-point of their career as a way to encourage them to continue with their trailblazing ideas. The Craig H. Neilsen Visionary Prize was launched in 2020 to highlight the legacy of our Founder’s gift to the world of spinal cord injury (SCI). It acknowledges the efforts and influential voices of people who embody the values that were important to Craig during his lifetime. To date, 12 individuals have been awarded the Visionary Prize, which comes with an unrestricted gift of one million dollars. There are no expectations for how the money will be used, but our hope is that the acknowledgement will provide a confidence boost and highlight the importance of their work.

One of the inaugural Visionary Prize recipients was Dr. Brian Kwon, a compassionate surgeon and thoughtful scientist who, in addition to caring for his patients, is dedicated to solving the mysteries surrounding SCI. He is a devoted mentor, sharing his knowledge and experiences with trainees at University of British Columbia’s International Collaboration on Repair Discoveries (ICORD) and he serves as the Director of Research for the Vancouver Spine Research Program.

When awarded the Visionary Prize, Brian used the money to create the SCI Innovation Fund at the University of British Columbia Hospital Foundation. This fund encourages creative thinking by allowing researchers in his organization to test out what he calls “cool new ideas” before beginning the application process for a large grant. “It gives us the ability to think a bit outside the box and take on things that are maybe a little unconventional or risky,” Brian explains. “We have embarked on some really novel things that we wouldn’t necessarily have been able to do. We have discretionary funding that we can draw on to try something new and, all of a sudden, we have data to get a much larger grant. We’ve actually been able to leverage these funds and get an additional $2 million grant.”

But the Visionary Prize has given Brian a much bigger goal than funding research—he hopes his contribution to start this fund expands the discussion about philanthropy and encourages others to invest in his organization: “If funders know that you believe in something enough to put your own money into it, then it’s a much different discussion when you’re trying to raise money to support SCI research,” he states, revealing a vision that mirrors values important to our Founder.

Each of the Visionary Prize awardees inspires the SCI community and beyond as they continue their leadership in their chosen fields—be that medicine, the arts, business, research, advocacy, or athletics. We believe that Mr. Neilsen would be proud to see how their bold work and determination are improving the lives of others.

Sharing knowledge can stimulate better and richer conversations. At the Craig H. Neilsen Foundation, we value open communication among our programmatic and scientific grantee partners. We encourage researchers to push in new directions, but the key to advancement is passing on the knowledge gained so others may benefit from what was learned.

Many of our grants involve sharing information from new research that, in the short or long term, will help individuals with spinal cord injury (SCI), their families, and physicians make better decisions about care. Researchers are looking at the strain on caregivers as they assist people with SCI during the first year after injury in one ongoing Psychosocial Research portfolio grant. Interviews being conducted will inform the development and dissemination of an Internet-based guide to assist caregivers. In an effort to move out of the laboratory and use that knowledge in the community, our grantee partners of a Creating Opportunity & Independence project in Philadelphia are creating the Next Step Series—an in-depth resource to inform the SCI community about everything from pressure sores to bowel and bladder problems to accessible housing.

Disseminating information to people living with SCI exemplifies much of the work that has been funded. Just last year, the SeePain guide was developed. This comprehensive tool, created by a group at The Miami Project to Cure Paralysis, is aimed at educating SCI consumers and helping them communicate with their healthcare providers about chronic pain. Learning about research results is vital for individuals with SCI, and there is not a specific type of research grant we focus on. One grantee partner developed information about bowel and bladder management—one of the top priorities for many people with SCI seeking a better quality of life. There is also new information for individuals who are hoping to become parents. One grant enabled researchers to get the word out about their advances and discoveries in sperm motility, and guidelines for breastfeeding are available on the Spinal Cord Injury Research Evidence website.

Some of our funded programs become examples that can be replicated by other organizations. The Nature’s Way wellness program for people with disabilities worked so well at Sunset Hill Educational Institute that its staff is planning to share its experiences as a model for other organizations. And grantee partners at the Oregon Spinal Cord Injury Connection are providing information and resources to peers at Connecticut’s United Spinal chapter after finding success with a community health worker program to reach low-income clients in rural areas.

Grantee partners are encouraged to share not only their scientific papers, but their data via the Open Data Commons for SCI registry—so it can be available for analysis in the future. And, having heard the call for “nothing about us without us,” we also encourage Integrated Knowledge Translation (IKT), the involvement of people with lived experience throughout the research process. IKT is a set of guidelines developed by researchers, clinicians, and members of the SCI community. In addition, the North American Spinal Cord Consortium (NASCIC) has developed a Research Advocacy Course to teach people about the SCI research process so they can become more involved in it.

We hope the knowledge gained by both researchers and those leading new community programs spreads, to help as many people as possible. If sharing becomes an even bigger part of caring, more organizations can use the knowledge and collaborate to improve the lives of people living with SCI.

How often are you presented with something your mind immediately tells you is out of your reach? Not just out of your comfort zone, but just not “possible.” We all must face the things we find difficult or frightening from time to time. People with a spinal cord injury (SCI) are faced with many challenges that appear insurmountable—sometimes even activities enjoyed with ease before their injury. Using our mission and values as a guide, the Neilsen Foundation aligns with grantee partners that are encouraging the SCI community to push through perceived physical and mental limitations and embrace a newfound talent or passion waiting to be developed.

For instance, the idea of lifting daredevils with SCI into the treetops of Colorado to experience one of the only fully wheelchair-accessible high ropes courses in the world would have seemed impossible some years ago. Now, it’s a summer activity led by creative outdoor enthusiasts. Advances in assistive equipment and technology also help athletic teams compete at the highest level, while enabling grantee partners to lead hiking expeditions and climbing and wilderness programs. Feedback we have received suggests these types of activities offer so much more impact than just trying something new. They can “help reduce anxiety and boost wellness,” while giving individuals with SCI “a sense of community, joy, connectedness, and self-accomplishment.”

Extreme sports and mental toughness may be all the rage, but not everyone is up for that kind of thing. When your physical goals don’t include athletics and adventure, rediscovering the ability to paint or enjoying nature through photography might do wonders to improve your outlook. Accessible arts programs are thriving from Vermont to Texas, and opportunities to expand a love for photography have been supported from California to British Columbia.

Do you still think the “impossible” is so far out of reach?

Resources like peer support can help individuals newly injured overcome barriers that seem overwhelming by envisioning a future with potential rather than limitations. This can start with meeting a friendly stranger in the hospital—someone who has experienced life as you are about to, who can advise you about things you might encounter during your rehabilitation and beyond. Their understanding, guidance, and encouragement can help a person see how to make the most out of life. These peer mentors can introduce individuals with SCI to professional resources that set them on a new course with milestones that lead to greater independence. For some, getting behind the wheel of a car can be freeing, while others might want to get back to an activity they once loved, or even become an advocate or a mentor to others.

At the Neilsen Foundation, we meet so many people who have found a true purpose and a healthy new outlook on life following injury. We are moved by people who push past perceived limitations and encourage others to do the same. Every one of us should follow their example and test what we think are our limits—even for a minute. Then, next time, you might find yourself doing it for two minutes.

In celebrating over 20 years of funding and over 2,500 grants awarded, we also salute the many organizations providing services and conducting research on behalf of the spinal cord injury community. Our grantees are our partners in achieving our mission. Being willing to share ideas and listen to the perspectives of others are ways to enhance these partnerships, so last year, we worked with the Center for Effective Philanthropy to conduct a Grantee Perception Survey. In the feedback we received, there was an increased appetite for connection among fellow grantees and, although the Neilsen Foundation does not convene its grantee partners, we do have a great tool for learning more about who we fund, what we fund, and where we fund.

The Search Funded Grants link on our website was developed to acknowledge the work being done and to build connections between organizations and researchers interested in knowing more about our partners. You can search grants on our website in two places—at the bottom of our homepage or near the top of our Programs page. Both have a bright gold button to make it easy to find. The links take you to a large database of Neilsen Foundation grants.

“But how do I use it?” you may ask. We are happy to provide a few tips. In this day and age, most of us know to look for a magnifying glass icon/search box, but here are a few tips to help search effectively:

1. The search tool at the top offers users a comprehensive list of Neilsen Foundation grants. Each grant title links to a page with more information about that grant, including information provided by the organization to describe its work.
2. The web tool is hard-wired to use “research” and “researchers” in the headers, but this listing really is inclusive of Neilsen Foundation grants—programs, education, and research. Each grant is coded by the Neilsen Foundation’s portfolio acronym, COandI (Creating Opportunity & Independence), for programs, SCIMF (SCI Medicine Fellowships) or NSP (Neilsen Scholarship Program) for education grants, and, for research, SCIRTS (SCI Research on the Translational Spectrum) or PSR (Psychosocial Research).
3. You can enter text in the Search box at the top of the page to focus on any topic. Alternatively, you can use the word ‘AND’ for combinations of interests and portfolios, e.g., ‘pain AND chronic,’ ‘recreation AND COandI,’ or ‘bladder AND SCIRTS.
4. The menus on the sides of the page are additional tools that allow users to limit the results to specific years, grantees, organizations, or locations. Again, the listing includes all types of grants and collaborations, not just research. The drop-down menus under FILTERS on the left offer suggestions, or you can use the “More” links to search for other people or places. The headers on the right menu allow you to browse all places and organizations included in the search result.

At the Neilsen Foundation, we look for ways to make interactions with those interested in the Foundation’s mission—especially the organizations we support—more meaningful. This tool is intended to be an opportunity for our partners to learn about and connect with one another. We know that searching through long lists can be overwhelming and we understand that no text search is perfect, so we hope these tips get you off to a good start. If you want more information about the Foundation’s funding, or other information on specific topics, our staff are happy to help.

Historically, there is a power imbalance in philanthropy between funders and applicants. The Neilsen Foundation needs its grantees to achieve its mission and, of course, its grantees need financial support to underwrite their programs and research projects. It is a relationship of mutual importance enabling us all to meet our goals. Applying for grants is inherently hierarchical but, over the last few years, we have worked to change our processes as well as our language to highlight that it is the beginning of a partnership. We see our grantees as partners—from application to funding and beyond—and it’s essential that our intentions and actions align.

We are thrilled when we hear that funded projects are going well. But, when they are not, we invite those discussions, so necessary changes can be made to achieve the project’s goals. We want to help our grantee partners succeed by making the best use of grant dollars. Foundation staff is open to sharing ideas, challenging assumptions, and collaborating to help support a grantee’s goals. That doesn’t mean we can be everything to everyone, but a frank conversation in both directions is critically important. These types of partnerships allow us to serve the spinal cord injury community in the best way we can, while encouraging the organizations that we support to be dedicated stewards of their funding.

In an effort to put these values into action, Neilsen Foundation staff try to remove barriers. Communication is encouraged throughout the process, from informational sessions and webinars to setting up one-on-one conversations. These give us the opportunity to clarify how our funding works, help everyone manage issues as they arise, and build better partnerships. These interactions have prompted the Foundation to make very intentional changes—rescheduling application deadlines to align with academic timelines, expanding programmatic grants to include capacity building, and making efforts to clarify or simplify our application processes.

There are also times when we hear ideas from grantees that aren’t right for the Neilsen Foundation. These may be requests that are outside our funding scope or suggestions to shift our grantmaking in directions that are not well-suited to our mission, vision, and values. People’s willingness to raise difficult questions demonstrates how important partnership is, even when, after consideration, we may not change how we make grants.

Partnership is more than just dollars in a grant. The most important thing that develops when grantees become partners is trust. Trust allows us to tackle difficult issues without the fear of impacting funding or the relationship. We acknowledge that the Foundation must take the lead in building trusting relationships, but we hope the organizations we support—and those we don’t—feel comfortable approaching us with hard facts and tough feedback. By working towards the goals we are all trying to achieve, we make ourselves better—together.