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.

When I was little, I remember being taught the nursery rhyme, “Sticks and stones may break my bones, but words will never hurt me.” My younger brother’s favorite was, “I’m rubber and you’re glue. Everything you say bounces off me and sticks on you.”  Well, although these may have been go-to strategies for parents in the 70s and 80s, they no longer apply. Words do hurt and, if you hear something enough times, it’s impossible to just let them bounce off. Words impact how we feel about ourselves and how others define who we are as people. Given the influence this has on our mental health and wellbeing, I have recently reflected on some words and phrases that are newer to my everyday vocabulary and carry a lot of power.

Ableism—This is a big one. Once you are sensitized to it, you will see it everywhere. Simply, ableism is discrimination in favor of able-bodied people. People with disabilities are often underestimated or devalued and their disability is looked at as something that needs to be fixed. There is so much implicit bias in our culture, so to truly combat ableism, people with a disability must have a seat at the table for key decisions. When their lived experience and perspectives are a part of the development of an idea from the start, the impact is much greater. Although I want to believe that people are well intended, most communities weren’t built with people with disabilities in mind and it’s time to evolve.

Inclusivity—It is easy to say “we are inclusive” but to put inclusivity into action, we must be proactive. It can take time, resources, and a hefty dose of humility. Acknowledging that you are not as “inclusive” as you thought can be tough, but that’s NOTHING compared to the hurdles people living with a disability face every day. A great place to begin is for your organization to create an inclusivity policy that provides equal opportunity for people who may have been marginalized in the past. Make an effort to enhance diversity and ensure an employee’s opportunity regardless of background.

People-First Language—This might be a small shift in habit, but it is important to be aware of how meaningful it is. By using people-first language, we put the individual before the description (diagnosis, gender, race, etc.) and describe a characteristic of the person and not what the person is. Saying someone is a spinal cord injured woman is not putting the human being first. Respecting the individual would be to put them first and state, she is a woman with a spinal cord injury. I understand that this can be a little tricky when using the term Disabled—some prefer to use ‘Disabled people,’ referring not to medical impairment, but to barriers set up by society that limit people. This language can serve to bring a diverse group of people together and communicate shared experience with the goal of creating social change.

There are other words or ideas that were once new and are now a part of how I make decisions. Are we creating an environment with equity versus equality? If it’s equal, I have given the same 6” box to everyone to help them see over the fence, no matter how tall you are or if you’re sitting in a wheelchair. If I am focused on equity, then I’d provide each person with a box tall enough, specific to their needs, to see over the fence. What about the word trust? When making decisions for the Neilsen Foundation, we build trust by seeing and working with our grantees as our partners, recognizing that accountability must go both ways. This helps us grow relationships and foster collaboration. In the world of applications, reports, and budgets, operationalizing how organizations can trust each other can be difficult on many levels. It requires a change in thinking, and then, a change in behavior. I hope you will think of how good it felt the last time someone trusted you and find a way to apply that to your institutional or corporate relationships.

I consider myself to be a thoughtful ally. I genuinely care about the people in my community, I am authentic in my interactions, and I do my best to make values-based decisions. But that is not enough. In the process of writing this piece, I’ve learned more about things I didn’t know I didn’t know. In 2024, I encourage you to look harder at the words you’re hearing and find opportunities to let these ideas influence your behavior. No doubt, there is a place where you can use your voice, power, or position to help move us forward in fighting Ableism, building equity and trust, and empowering relationships. So, let’s examine those nursery rhymes. How about “Itsy Bitsy Spider?” Resiliency at its best.

On behalf of the entire Neilsen Foundation family, we wish you a happy and healthy holiday season!

Kym Eisner, Executive Director

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

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

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

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

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

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

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

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.