$4.4 Million in New Psychosocial Research Grants Awarded

May 12, 2023

The Craig H. Neilsen Foundation is proud to announce new grants totaling over $4.4 million in its Psychosocial Research portfolio. Our 2023 grantee partners are helping to expand the field of psychosocial research and include more early career investigators, as well as a mix of returning grantees, first-time recipients of Neilsen Foundation support, and postdoctoral trainees.

An African-American man in a wheelchair seeks advice from a therapist. The bald-headed man is wearing a white sweater and gray pants. The female therapist has shoulder-length brown hair. She is wearing a blue T-shirt and black pants.The Psychosocial Research (PSR) portfolio supports science that explores the intersection of social, psychological, and behavioral consequences of spinal cord injury (SCI). These factors affect quality of life, but few researchers have focused on this area. Our partner grantees are looking at the whole person, identifying ways to ease an individual’s transition back into daily life in an unfamiliar body. They consider people’s changing psychological needs and how to make sense of them, listening to how individuals want to live, and developing new tools and therapies to help them achieve their goals.

For our part, we hope to strengthen partnerships by listening to the research community and learning from it, so we can make PSR funding as impactful as possible. Over the past few years, in addition to helping our partners bridge gaps in their studies during the pandemic shutdown, we increased the funding amounts in all PSR categories. We are trying to better support the actual expenses associated with a project by acknowledging inflation, rising travel and equipment costs, as well as establishing childcare allowances. By investing in SCI researchers, we are one step closer to ensuring people affected by and living with SCI can experience full and productive lives in their communities.

We continue to be impressed by the thoughtfulness and creativity of our grantee partners. It’s great to see researchers coming back to the Neilsen Foundation, challenging themselves anew, and offering inspiring ideas. We love seeing study results leading to next steps that show progress is being made.

The portfolio includes areas of focus that continue to be high priorities for people living with SCI. Four new grants will support strategies and interventions related to the management of chronic pain. From testing the effectiveness of hypnotic cognitive therapy to the feasibility of sprint interval training, researchers’ willingness to think beyond traditional treatments speaks directly to the Foundation’s values. We are also supporting multiple studies that will focus on the wellbeing of peer mentors, to identify key factors that contribute to burnout and “compassion fatigue,” and explore how to set healthy boundaries for both mentors and mentees.

Like all Neilsen Foundation portfolios, PSR continues to support vital projects led by people who are trying to make a difference. We are proud to support these bold scientists who continue to be forward-thinking. To learn more about the types of grants funded through the PSR portfolio, you can search for funded grants on the Programs page of our website.

It's About Dignity: Managing Bowel & Bladder Care

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.

Smiling young man in a power chair on a college campus. He is wearing glasses and a green sweater. He appears to be happy and at peace.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.

Better Because of You

April 15, 2023

A group of wheelchair users wave their hands in the area during a high-energy fitness classAs spring begins and flowers start to bloom again, it seems easier to find inspiration. Family, friends or even a stranger on the street can open our eyes to fresh ideas from a different perspective. When the Neilsen Foundation began its grantmaking in 2003, the focus on improving the world for people with spinal cord injuries was clear, but how this goal would be accomplished was both ambitious and uncertain. Our grantmaking was transactional. With the expansion of our programming, our focus on our mission, vision, and values, as well as our desire to foster a culture of creativity and collaboration, we have evolved by placing relationships at the core of our grantmaking philosophy.

Our grantees are our partners. We understand the Foundation cannot achieve its mission without them.  Collaborating with others has also helped us expand how we put both our mission and our values into action. We continue to grow by sharing ideas, learning from like-minded organizations, and ensuring the voices of people with lived experience are a part of the conversation. Understanding we are just one voice, not the voice, has allowed us to remain flexible and evolve to better serve our various constituencies.

Over the last 20 years, our thousands of grantees have informed our processes, pointing out unintended barriers and sharing thoughtful solutions. Our connections to the American Spinal Cord Injury Association, United Spinal, as well as Unite2Fight Paralysis remind us of the specific needs of those living with spinal cord injury. At the end of May, with the support of the Center for Effective Philanthropy, we’ll launch our second Grantee Perception Survey to gather candid feedback from our recent grantees.

Relationships with organizations whose missions don’t specifically focus on disability, like the Nonprofit Finance Fund or Team Rubicon, have allowed us to discover alternative ways to approach our day-to-day business. Working together serves to strengthen their disability awareness, as well. We appreciate how all of these partnerships have made us stronger.

Where do you look to find new ideas? Can you expand the circle of people you typically reach out to? Are there new partners or collaborators that might help you approach things differently? Working with others allows us to share risk, expand our workload, and be a part of something bigger. It can be unnerving to initiate these conversations, because your assumptions may be challenged—and you might be pushed to do things differently. But if you can genuinely listen, putting ego and the fear of the unknown aside, you might find inspiration.

As Helen Keller said, “Alone we can do so little; together we can do so much.”

Imagine what’s possible,

 

 

Kym Eisner
Executive Director

Caring About Caregivers

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.

A caregiver attends to an elderly wheelchair user

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.

Funding with a Broad Reach

March 15, 2023

A team of wheelchair basketball playersSpinal cord injury profoundly changes life and accessing resources is hard—no matter how old you are, where you live, or the color of your skin. The Neilsen Foundation’s commitment to supporting smaller, grassroots organizations, or those located in a town outside an urban center, acknowledges the need to fill gaps in support across the spinal cord injury (SCI) community. Guided by passionate advocates, collaborative program staff, and expert advisors, bigger doesn’t always mean better.

To embrace the world of SCI, we strive to be proactive in our funding. From increasing investigator salaries and supporting grantees during the pandemic to training the SCI doctors of tomorrow, it is important for us all to be thinking ahead.

The Palo Alto Veterans Institute for Research engages with the SCI community in rural settings to identify the healthcare needs of those who identify as sexual and gender minorities.

The WheelCats and ThunderCats (pictured) in Mississippi invite locals of all ages with SCI to play basketball and enjoy success at tournaments across the U.S., and Jacob’s Pillow Dance Festival offers dancers with SCI in New York and New England the chance to show off their artistry and passion through movement.

The Neilsen Foundation also looks to support research with creative approaches, no matter where a scientist is in their career trajectory. We partner with research centers from coast to coast, in college towns like Bloomington, Indiana, and Columbus, Ohio, as well as universities in major metropolitan areas.

Meanwhile, the 17 schools who oversee the Neilsen Scholarship Program on their campuses include four-year universities as well as institutions like Portland Community College in Oregon, where 23 students have received both tuition assistance and supplemental support to defray their living and campus expenses.

As we mark 20 years of grantmaking at the Neilsen Foundation in 2023, we’re taking a moment to celebrate success with our partners and grantees. They help us achieve our mission and honor the legacy of our Founder, Craig H. Neilsen, by seeking out new ideas, pushing boundaries, and reminding us we have the ability to make a difference.

Empowering the Every(woman)

Everyone needs to be heard. Validation can be empowering. Encouragement can come from the smallest success to the biggest victory. Individuals with a disability often have to shout louder to be heard, but those with lived experience must break through the noise. We must support those voices because they make an important difference and should be a key part of the conversation.

The Craig H. Neilsen Visionary Prize was launched in 2020 to honor our Founder and celebrate influential voices in the world of spinal cord injury (SCI). Because it carries an unrestricted $1 million award, we knew it would be impactful for the recipients, and it appears the acknowledgement means almost as much as the financial support.Dr. Kim Anderson-Erisman smiling and looking hopeful

Kim Anderson-Erisman, PhD, (pictured) was one of three people awarded the Visionary Prize in 2021. Honored for her scientific works as well as her advocacy, she admits that receiving the prize gave her a fresh way of looking at herself, and a renewed drive to approach what was in front of her. For Kim, the world of SCI is education, diversity in the workplace, innovative rehabilitation technologies, bowel and bladder research, as well as relief from neuropathic pain.

“One of the biggest things that the Craig H. Neilsen Visionary Prize did for me was revitalize me to keep on pushing through all the hard things and then continuing to do these kinds of things that are important to people with spinal cord injuries,” Dr. Anderson-Erisman explains.

With a newfound confidence, she took the lesson from the award and translated it into action. After fighting for the needs of people in the SCI community throughout her career, she was receiving recognition that empowered her to step up to the next stage of her storied career.

“Everything I had been doing for the last 20 years meant something,” Kim adds. “It was validation. There were a lot of struggles and I put myself out on the line and this meant something to people—and it made a difference—and fueled me to keep on doing that. It validated me raising my voice when something needs to be said in support of people with SCI… I speak out even more now!”

Craig Neilsen was a man who spoke up for others. Our hope is that all of the recipients of the Visionary Prize feel the same validation and confidence to forge ahead with their own visions to make the world a better place.

Training the Next Generation of Spinal Cord Injury Physicians

February 15, 2023

In 2006, the Craig H. Neilsen Foundation responded to a simple request to help underwrite a fellowship to train a physician to care for patients with spinal cord injury (SCI).

After receiving similar requests yearly, the Spinal Cord Injury Medicine Fellowship portfolio was launched in 2011 to provide grants to nationally accredited institutions.

two masked colleagues enjoying a work breakThese grants support fellows the institutions recruit and ensure funds are available to maintain the SCI rehabilitation residency programs. To date, the portfolio has supported 110 residency fellows by partnering with 17 sites to ensure that early-career physicians are provided opportunities to receive this highly specialized training and the tools they need to properly care for people with SCI.

The SCI Medicine Fellowship portfolio and its goals have continued to expand, covering costs associated with research and ongoing education in addition to salaries. This allows fellows supported by the Neilsen Foundation the opportunity to expand their breadth and depth of knowledge by engaging with colleagues and participating in national meetings as part of their training.

Collaboration and leadership to train physicians in spinal cord injury medicine has also come from the Department of Veterans Affairs (VA) hospitals, the largest employer of SCI physicians in the country. Initially, the VA provided training at their facilities, while the Neilsen Foundation has supported fellowships at institutions not affiliated with the VA. In the last few years, we have partnered more often to co-fund training, which is intended to encourage the fellows to experience different health systems and broaden their commitment to SCI medicine.

Adam Stein, MD, the Chair of Physical Medicine and Rehabilitation at Northwell Health in New York and a longtime supporter of the SCI Medicine Fellowship portfolio, who trained at a time when there were no accredited fellowships, insists the training is “critical” in providing SCI patients the care they need.

“These patients have an uncommon, though highly visible, condition, and you don’t become competent in caring for these individuals by going to medical school or doing a basic residency,” Dr. Stein explains. “It’s like asking if it’s important if a neurosurgeon does brain surgery.”

He believes many of the institutional fellowships available today would not exist if it were not for the Neilsen Foundation’s support.

“Residency training in the U.S. is largely funded by the federal government,” Dr. Stein adds, “but in 1996 every institution was frozen at their approved number of residents. That number has never been increased. Spinal cord injury medicine didn’t exist in 1996, so the Neilsen Foundation’s ability to fund a number of these residency spots has allowed these fellowships to expand. I don’t think all of them would have existed if not for the support of the Foundation.”

At the Neilsen Foundation, we are committed to and focused on the care and wellbeing of individuals with SCI, and our hope is that by working with our partners in the community, the efforts will help ensure people living with SCI get the care they deserve.

Making Progress with Pregnancy,
Infertility, and Intimacy

A man in a wheelchair looks adoringly at his pregnant wife. The couple is pictured in a Fall woodland settingLove is in the air and Valentine’s Day is an annual reminder for us to celebrate romance, friendship, connection, admiration, sexuality, and reproductive wellbeing— none of which end with a spinal cord injury (SCI).

For over a decade, the Craig H. Neilsen Foundation has partnered with researchers, who focus on intimacy, infertility, and breastfeeding after SCI, which speaks directly to the Foundation’s vision of a world where individuals with SCI and those who care for them live full lives.

Intimacy and sexual satisfaction are an important part of life that are challenges for many people post-SCI. With patience as well as the help of partners, sex therapists, and healthcare experts, these challenges melt away leading to deeper connections, pleasure, and sensuality.

Intimacy is highest when there’s an emphasis on what the whole body feels, and all the sensations, during intercourse. For many whose sexual sensation is altered by SCI, sensual exploration becomes vital, and some discover different areas of the body become erogenous. Even parts of the body directly affected by the injury can become pleasure zones again, given time, creativity, and practice.

The Neilsen Foundation has partnered with researchers throughout North America, who are committed to the wellbeing of individuals with SCI and fulfilling all their needs.

At the University of Michigan, intimacy research focused on female sexuality includes a trial of nerve stimulation to enhance the sexual experience for women with SCI, while research efforts at Kent State University are investigating how spinal cord injury changes the nerves controlling the reflexes that undermine important sexual functions in men.

Meanwhile, at the University of Miami, studies focus on semen and impaired sperm cell function, which often results in infertility. Researchers have spent decades studying cost-effective and less invasive ways to help infertile men with SCI become biological fathers.

Another innovative reproductive health project focuses on the psychological needs for women with SCI, who are thinking about or planning a first pregnancy. A tool being developed at the Shirley Ryan AbilityLab presents information about possible health issues and questions for women to consider, to better equip them with information and readiness to make this life-changing decision.

For new mothers with SCI, a team at the University of British Columbia is studying lactation and breastfeeding challenges, such as child positioning and issues related to engorged breasts, for new mothers with SCI, and seeking solutions. These findings are being shared with health professionals and new moms to help them understand and better manage postpartum.

Among all the science, here at the Neilsen Foundation we understand the importance of connection, intimacy, and the needs of the SCI community, and we remain committed in our goal to fund research, programs, and projects to enhance the wellbeing and quality of life for individuals with SCI. Long live love!

What a Difference 20 Years Can Make!

January 17, 2023

In 2003, the Craig H. Neilsen Foundation awarded its first grants—four grants to be exact. Three programmatic grants totaling just under $50,000 and one research grant for approximately $200,000. Our goal was to advance spinal cord injury (SCI) research and increase access to programming for those living with SCI. Fast forward 20 years, and at the end of 2022, the Foundation has awarded just under 2,300 grants with a total contribution to the world of SCI of over $355 million.

Celebrating 20 Years of Grantmaking icon

Over the decades, our grant programming has expanded significantly. In addition to funding basic research and community programming, 2006 marked the first grant to underwrite a SCI medicine fellowship to ensure doctors were being trained to meet the needs of people living with SCI. With more than 100 rehabilitation specialists trained in SCI medicine to date, training young doctors wasn’t the only programmatic expansion. The Neilsen Scholarship Program, which began by partnering with one academic institution, now collaborates with 17 across the country, underwriting both the costs of attending school, as well as supplementary support (e.g., personal care attendants, assistive technology, mobility equipment) to remove barriers students with SCI may encounter.

Over the years, the ways the Foundation has supported research have continued to expand, and in 2014 we launched a Psychosocial Research portfolio to focus on the psychological impact SCI has on individuals and their families. By adding additional opportunities in research funding, the Foundation continued to encourage scientists to take creative risks, to fill gaps in knowledge, and to develop data that will transform promising medical and psychosocial approaches in treatments that benefit people living with SCI. We are also very proud to have partnered with more than two dozen organizations with similar goals, and, to honor the legacy of our Founder, the Craig H. Neilsen Visionary Prize was created in 2020, to celebrate individuals changing the world for the SCI community. To date, we have awarded $9 million to nine visionaries, whose expertise includes advocacy, the arts, athletics, research, and healthcare.

In addition to the growth of the various funding mechanisms, the Foundation has also refined its mission, vision, and values, and we are always searching for opportunities to put those values into action. Our mission has evolved, acknowledging the importance of enhancing quality of life, our research portfolios have expanded with focus from the bench to the bedside, and in the past few years, we have found ways to proactively support grantees in times of crisis.

This is not the end point or destination for the Foundation—it is only where we are on our path to achieving our vision, in which individuals with spinal cord injuries, and those who care for them, live full and productive lives as active participants in their communities.

As we begin an exciting 2023 at the Neilsen Foundation, we would like to thank all our partners and grantees for 20 years of achievements, none of which would have been possible without you.

Funding to Expand Inclusion and Diversity in Research

The Craig H. Neilsen Foundation is launching an initiative in 2023 to inspire its current research grantees to think more deliberately about how they can recruit people with spinal cord injury, as well as those from other disability and underrepresented communities, into their laboratories.

Beginning this month, the Foundation will provide Research Inclusion Supplements to encourage and support undergraduate and/or graduate students from groups that are historically underrepresented in the biomedical, clinical, and social sciences.

 

Grantees who are part of the Foundation’s 2022 and 2023 Psychosocial Research (PSR) or SCI Research on the Translational Spectrum (SCIRTS) portfolios, with at least 12 months remaining on their grant, will be eligible to apply for this supplement. We hope this will incentivize our partners in SCI research to think more inclusively.

“Inclusion is one of the Craig H. Neilsen Foundation’s five values and encouraging greater diversity in the scientific workforce allows us to put this value into action,” Executive Director Kym Eisner explains. “Expanding the participation of persons with disabilities in the design, conduct, and implementation of SCI research can accelerate progress toward fulfilling our values.”

Naomi Kleitman, Senior Vice President of Grants and Research, continues, “To build diversity within the field, as well as expand it within the laboratories that we support, it is important to attract and support students from diverse communities to SCI research.”

Stipends will support undergraduate and graduate students, who will be mentored by experienced SCI researchers, as well as some additional laboratory costs.

Invited grantees may submit a supplement request, via the Foundation’s ProposalCentral portal, by April 1, 2023, with a second deadline of October 1, 2023.

Working together, we can imagine a future that is diverse, equitable, and inclusive.