Partnership with our grantees means providing clear funding guidelines, open communications, and decision making that is rooted in our mission, vision, and values. It also means that, in times of crisis, we must be proactive and flexible, responding to the immediate needs of the spinal cord injury (SCI) community. This was inspired by our Founder, Craig H. Neilsen, and the work we do today is driven by the values important to him during his lifetime.

It can be difficult for organizations to shift the way they do things but, because disaster can strike at any moment, we need to be ready to help those in need. Every catastrophe creates challenges for daily life and disruption of operations for organizations that serve the community, and people with disabilities often face the greatest risk. In addition to engaging with organizations to help support relief and recovery efforts, collaborating with grantee partners has been an effective strategy to help prepare the SCI community and deploy resources.

After the 2013 Boston Marathon bombing, we considered what the Neilsen Foundation was uniquely positioned to do. That meant not only supporting immediate medical needs, but also partnering with dedicated clinicians to track the long-term psychiatric complications and quality of life of survivors. This research was shared with a network of hospitals to help prepare staff for future events. Building on the partnerships with community foundations in the wake of hurricanes in Texas and wildfires in California, we partnered with Team Rubicon to learn from their expertise in disaster response and recovery efforts.

Forging these partnerships informed our thinking when COVID hit. As the world went into lockdown, we reached out to hundreds of grantee partners and launched Pandemic Relief grants. Our Board of Directors made $10 million available to deploy quickly to organizations ready to provide food, personal protective supplies, and other necessities to the SCI community, as well as vital support services. We also supplemented grants to research institutions during the shutdown to help them keep staffing in place and ensure studies could be completed.

Ensuring the needs of the SCI community are met remains our top priority. We established an ongoing partnership with the United Spinal Association because they were better positioned and had an infrastructure to do what we could not—provide relief directly to individuals living with SCI. This collaboration takes the ongoing management of disaster relief—something outside the Foundation’s typical programming—and gives United Spinal’s leaders and chapters the capacity to respond to the needs of their members when disaster strikes.

Most recently, a partnership with the American Spinal Injury Association (ASIA) helped both of our organizations think outside the box to assist a World Health Organization/United Nations mission in Ukraine. Dr. Andrei Krassioukov spearheaded this ASIA initiative to translate medical information so that local doctors and medical volunteers could be taught how to care for the growing number of people with SCI.

It is imperative for all of us to help others in need, even if it means stepping away from traditional ways of operating. When disaster strikes, we must work to stretch our limits and partner with experts who can provide the best solutions for recovery and ongoing relief. We encourage others to envision how they can step up in a crisis.

Following a spinal cord injury, there is urgency to find quality treatment, compassionate care, and emotional support. Fortunately, across the country, there are facilities dedicated to meeting this need. However, patients with complex injuries aren’t typically the first consideration when it comes to the design of a hospital room, where individuals with a spinal cord injury (SCI) will remain during a critical time in their recovery. With the incredible growth of technology and the advances of accessibility, a hospital room can be designed around the touch of a button.

 In the last five years, the Neilsen Foundation has seen a large uptick in grant applications requesting support for in-hospital technology upgrades from portable devices to rethinking how people’s needs are met.  With the creative ideas our grantee partners are presenting, building a hospital room that can be controlled by a patient gives an individual independence at a time in their lives when they might feel that everything is out of their control. This can be an important step to recovery.

In 2020, the University of Utah opened the Craig H. Neilsen Rehabilitation Hospital. This state-of-the-art facility was designed to be fully accessible with a one-touch and voice-controlled system that extended throughout the hospital (see photograph). This technology creates an environment that is easier for patients and their families, as well as staff, and adds little to no cost when incorporated into a building’s initial architectural design. There are other medical and rehab centers around the country with newer facilities, like the Shirley Ryan AbilityLab in Chicago and the University of Miami, which have also created a more accessible space for individuals with SCI.

“I see the ease with which people flow through the space,” Jeff Rosenbluth, the Medical Director of the University of Utah’s Spinal Cord Injury Acute Rehabilitation program, explains of the Craig H. Neilsen Rehabilitation Hospital. “I don’t think people understand how embarrassed patients are to call the nurses back and forth to close a door, change the channel on the TV or turn the volume up and down, or fix the blinds. They don’t want to feel that dependent. They don’t want to bother you… I’m impressed how big of a deal it is to control simple things in your life.”

The technology is also helping to provide hope and healing for young patients with SCI at Phoenix Children’s Hospital in Arizona. The Neilsen Foundation supported the purchase of an assistive technology device that allows users to control aspects of an adaptive hospital room, including bed positioning and height, nurse call, computer access, and zone lighting all with a voice command or one-touch interface.

Technology can also improve accessibility once people leave the hospital, so our grantee partners are working to make sure individuals with SCI have the ability to modify their homes with some of the same tools they had access to during their early weeks of recovery. The Center for Independent Living of Broward, Florida has renovated homes and installed smart technology devices such as automated door openers, thermostats, and even electrical outlets. Similarly, engineers at MultiCare Foundations are developing an Assistive Technologies Lab that will provide outpatients with access to devices, so they can test them at home to maximize independent living.

We are inspired by how our grantee partners are using technology to make huge strides for the wellbeing of people living with SCI. By harnessing these tools and being thoughtful about how to use them to our advantage, barriers we once thought were insurmountable are being removed. Putting the needs of people first, thinking creatively about how to integrate technology, rehabilitation, and independent living, we look forward to seeing what’s coming next.

When the sun is shining, there really is no better time to get outside and enjoy all that the season has to offer. Maybe try a sport or hobby you have only dreamed about. With so many opportunities for adaptive athletics across North America that are focused on the outdoors, there has never been a more exciting time to join a team or find a community group to inspire the adventurer in you!

At the Neilsen Foundation, our Creating Opportunity & Independence (CO&I) portfolio works with nonprofit organizations that run exceptional programs geared towards providing people with spinal cord injury (SCI) access to outdoor activities. When summer calls, most people love the idea of getting outside—maybe establishing a fitness goal or meeting new friends. Sports and recreation projects have always been a big part of CO&I, and this year more than a quarter of all the applications received come from organizations that provide opportunities to connect with the great outdoors.

If you are looking for fun this summer, from the East Coast to the West Coast, there are programs to fit every personality and skill level.

In upstate New York, Sunnyview Rehabilitation Hospital’s Adapted for Action program offers hiking and golf, and South Carolina Spinal Cord Injury Association provides yoga and wellness sessions. There’s ziplining, swimming, and track and field for the whole family at Georgia’s BlazeSports, and workouts with the United States Rugby Association in Alabama.

Team sports like softball and football are up for grabs at Midwest Adaptive Sports in Missouri, and, in Colorado, Breckenridge Outdoor Education Center offers camping, rafting, and the experience of life among the trees with one of the only fully wheelchair-accessible high ropes courses in the world. Individuals with SCI can enjoy life on the water with the first adaptive sailing program in Canada—The Disabled Sailing Association of British Columbia, and, if you have a passion for the sea, there’s Shared Adventures’ upcoming annual A Day at the Beach event in Santa Cruz, California.

Engaging within your community in an active way is so much more than just trying something new; it can also help reduce anxiety and boost wellness. Breckenridge’s Development Director Hallie Jaeger insists access to outdoor recreation and “finding a sense of community in nature” can lead to improved wellbeing. “The sense of joy, connectedness, awe, and self-accomplishment…is very difficult to put into words,” she explains. The Neilsen Foundation is proud to celebrate our grantee partners’ commitment to motivating people and prioritizing their wellbeing.

We acknowledge it might be tough for individuals recovering from a traumatic injury to think of a return to activities that now feel out of reach. We applaud the courage it takes to push your comfort zone, and the efforts of program leaders, peer mentors, and volunteers, who provide the encouragement that makes participation so much fun! So, go outside and enjoy the day!

The indignities faced after spinal cord injury (SCI) range from loss of independence and privacy to the perpetual fear of “having an accident.” The inability to control one’s own bowel and bladder impacts every aspect of daily life. Consistently one of the top priorities identified by people with SCI, managing bowel and bladder needs continues to be an unmet challenge that has not been well represented in funding research grants.

Because of this mismatch, we wanted to attract more focus to the issue. In March 2017, the Neilsen Foundation convened a three-day workshop with the goal of identifying key issues surrounding bowel and bladder dysfunction and developing strategies for boosting research efforts. We stepped in to provide some leadership, asking researchers and physicians, as well as people with SCI to identify the most urgent issues and imagine what could be done within 10 years.

Since then, we approved approximately $4.5 million in grants for nine research studies. And, working with our partners at Paralyzed Veterans of America, an updated Clinical Practice Guidelines (CPGs) for Management of Bowel Dysfunction was published in 2020, and a CPG update for bladder management is expected to be completed in 2024. Funding for research focused on bowel and bladder care by federal agencies has also expanded in the last few years.

The hope is that researchers with new ideas and crosstalk between experts from different fields will lead to exciting advances as more resources and funding opportunities become available. “It’s rewarding to know that our efforts motivated the development of these important studies,” Neilsen Foundation Program Officer Tracey Wheeler explains. “Researchers had noted many challenges in progressing their ideas, due to lack of funding and other roadblocks, and the Foundation prioritized this research, ensuring treatments for SCI bowel and bladder dysfunction would advance.”

Some of the new research is aimed at increasing our knowledge of how bowel dysfunction develops following SCI. New treatments being studied include drug and dietary therapies to prevent, manage, and reverse the dysfunction. Electrical stimulation designed to improve both bowel and bladder care has also become a major topic of research to help people with chronic injuries. The goal these efforts share is to identify successful new treatment options that will reduce the indignities of bowel and bladder management experienced by people with SCI.

Everyone deserves peace of mind, and improving the quality of life for people living with SCI is our goal. The development of and access to readily available, less-intrusive options must be a priority. We have seen growth in the numbers of researchers focusing their talents here, and we are hopeful their advances will become tomorrow’s treatment. We are excited to see where the next, best idea is coming from.

Spinal cord injuries are often the result of a traumatic, sudden event that no one can prepare for. One person is injured and, overnight, a whole family is changed. In what feels like the blink of an eye, family members take on new and wholly unfamiliar roles as caregivers. For most, being there for a loved one is not even a discussion point—it’s a given. However, the shift from partner, sibling, child, parent, or friend to full-time caregiver changes relationship dynamics. There’s a whole new way of life for an individual with a spinal cord injury (SCI) to get used to—and they can’t do it alone.

That support is so important. In the months following a traumatic injury, care can be needed 24/7. People who take on this critical role for newly dependent loved ones face a steep learning curve, and finding time to give the needed personal and medical care can force a rethink about careers to provide around-the-clock assistance.

The focus is on the person learning to live with SCI, which means the needs of caregivers can be neglected. Too often, the stress, frustrations, and concerns are hidden for fear of impacting others. But, not asking for and receiving the help one may need means the caregiver’s mental and physical wellbeing come second. That leads to a situation that is not healthy for anyone.

For the last 10 years, the Neilsen Foundation’s Psychosocial Research portfolio has funded research that focuses on caregivers and selfcare. The researchers start by asking caregivers about their needs and use that information to design skills-training programs and online educational resources. Emotional support for caregivers and cognitive therapy strategies are also being developed. Some researchers focus on parental caregivers and others on transitions across acute, rehabilitation, and community settings, helping families learn to advocate for the assistance they require. The much-needed acknowledgment that help is well-deserved and available goes a long way in supporting a caregiver’s mental health.

Dr. Susan Charlifue from Craig Hospital in Denver, Colorado, has dedicated much of her career to researching care for family caregivers. She insists providers must look after themselves as well as their loved one with SCI. “These people have a lot of issues, and they neglect themselves far too much, and by neglecting themselves they’re not really helping their loved ones,” she says. “It’s important to acknowledge the work they have to do, and they have to acknowledge it’s fine to cry, it’s fine to say no, and it’s OK to ask for help.” She notes that for some caregivers, a simple “thank you” is reward enough.

Help can also be found online via resources listed at the Christopher & Dana Reeve Foundation and FacingDisability, and in peer groups, such as United Spinal’s Wives and Girlfriends of Spinal Cord Injuries. But some families find solutions by hiring paid caregivers.

COVID compounded the issue, making it incredibly scary to bring people and supplies into homes. This left many families and “friend bubbles” fending for themselves, yet still needing support. If you were able to hire assistance, qualified professional home healthcare workers became scarce.

To solve this problem, Neilsen Foundation grantee partner Rochester Spinal Association recently created a Service Coordinator position to help individuals with SCI find the care they need.

“There’s not enough people to help,” Executive Director Chris Hilderbrant states. “There are programs that pay for personal care, but they don’t pay very well. We need society to respect personal care as a career and pay the folks better, giving them better benefits… They’re not just homecare workers. We need to make these careers a lot more desirable.”

The Foundation understands that everyone across the caregiving spectrum needs support, and funds those seeking to identify the best ways to help. We would like to follow the lead of our partners and applaud the work of those who provide the care.