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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When the Craig H. Neilsen Foundation was established, its mission was focused on spinal cord injury (SCI), so of course we were inclusive, right? Our intentions were there but we weren’t thinking about inclusivity beyond the needs of people living with SCI. Over the last 20 years, we’ve continually questioned how we achieve our mission and asked: ‘Are we doing our best to ensure that the Foundation’s decisions are reflective of its values?’ Establishing a broader programmatic mindset, as well as encouraging greater diversity in the scientific community, allows us to put inclusion—one of our five values—into action.

To support and grow a more inclusive scientific environment, earlier this year the Foundation allocated $1 million to promote our Research Inclusion Supplements. Our goal is to encourage our current research grantee partners to recruit and support undergraduate and/or graduate students from groups that are historically underrepresented in the biomedical, clinical, and social sciences. Including students from diverse backgrounds, especially those with disabilities, early in their academic careers in the SCI research process will help evolve the priorities of the field with new ideas and perspectives on issues relating to people living with SCI.

Paralysis touches the lives of people from all parts of our society, so attracting students from many backgrounds to the field of SCI research is a priority. To support the growth of the future scientific workforce, we see it as a responsibility to be more intentional in this effort. If the Neilsen Foundation of tomorrow is looking to learn from a more diverse group of experts, we must help build that today.

At the end of 2022, we invited 40 current grantees to apply for a Research Inclusion Supplement. The feedback has been encouraging so far, as we consider the first round of applications. “I’m really excited,” Neilsen Foundation Program Officer Jacob Shreckengost says. “We had people come in from racially and culturally underrepresented backgrounds, as well as people with disabilities. We’re hitting the places we’re supposed to be hitting.”

As the opportunity to apply for a Research Inclusion Supplement expands, we hope grantee partners will start recruiting more students with disabilities and from other underrepresented backgrounds into their labs. We are hopeful that our efforts will encourage others to think about how they can be more intentional and start their own inclusion journey. Imagine—this could lead to a future in which disability, race, culture, and gender will no longer present barriers for students hoping to improve the lives of people living with spinal cord injury.