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.

Making Choices That Matter

December 15, 2022

To our collaborators, colleagues, and friends, as the year comes to an end, I hope everyone will take the opportunity to spend the holidays with family and friends.

I consider myself an optimistic person, but I had moments in 2022 that sent shockwaves to my core. Between ongoing concerns about the pandemic, the economy, and politics, I heard too many conversations about all the things that make us different. But when did different become an ugly word? Celebrating our differences and finding common ground creates an opportunity to develop a collective idea. If we look beyond ourselves and a singular idea, our potential is endless.

At the Foundation, we make decisions using our Values as a lens. Driven by ideas that were important to Craig H. Neilsen in his lifetime, they are not only who we are but who we aspire to be. As I reflect on them as more than just words on a page, I find myself inspired. If each of us is committed to putting at least one (or two) of these values into action in 2023, think of the barriers we could remove and the broken system we’d change.

  • Collaboration—Leverage collective knowledge and encourage sharing of resources and expertise to foster progress and embrace new ideas
  • Creativity—Seek bold initiatives to catalyze progress and encourage innovative thinking that pushes boundaries
  • Excellence—Support research conducted with rigor and transparency and transformative programs that show significant potential
  • Inclusion—Commit to breaking down barriers, expanding opportunities, and promoting equity to help people of every background and ability reach their potential
  • Leadership—Lead by example to seek out visionary ideas and improve life after spinal cord injury

Now, if you’ve glossed over them as just another bulleted list, please, go back and really read and reflect on them. Where do you see yourself? Can you identify how you might make a proactive, intentional choice to help ensure people living with a disability live the life they deserve? If that feels like too big a charge and just one more thing to overwhelm an already busy season—try breaking it down. Find a small shift you might make that, over time, will grow into the change you want to see. Imagine what’s possible!

From all of us at the Neilsen Foundation, we wish you a happy, healthy, and safe holiday season.

With profound appreciation,A colorful Happy Holidays message card

 

 

Kym Eisner
Executive Director

Collaborating to Support Disaster Relief

The Craig H. Neilsen Foundation and United Spinal Association (USA) have become a formidable team when disaster strikes. The two organizations have worked together over the years on smaller projects, but it wasn’t until the pandemic that they truly partnered, sharing ideas and resources to directly support the SCI community. A $1 million grant supported United Spinal’s activities and COVID-relief outreach in 2020.

In 2019, the Neilsen Foundation awarded United Spinal a three-year grant tosmiling man seated in mobility scooter moves back into his renovated home develop an emergency preparedness program for individuals with SCI. A large grant to establish a Disaster Relief initiative followed in 2021. This provides vital grants to its chapters across the country, as well as its individual members. With this support, United Spinal established a grant program to support people living with SCI impacted by hurricanes, wildfires, and other natural catastrophes. (Pictured right: Renovated Louisiana home destroyed by Hurricane Ida ready for move-in.)

The initiative speaks directly to the mission of both organizations. Because United Spinal has the ability to respond directly to individuals, which is outside the scope of the Neilsen Foundation’s funding mandate, this partnership is extremely important—and it has grown in 2022. This year, after Hurricane Fiona swept through Puerto Rico, United Spinal provided 100 individuals in need of assistance with grants of $3,000 each and are in the process of responding to requests in the aftermath of Hurricane Ian. The grants have helped those impacted to purchase gasoline for generators, replace food items, cover displacement costs, and repair equipment and property.

“Our team has been working closely with the individuals to understand their situations,” Abby Ross, USA’s Chief Operating Officer, says. “We are managing insurance coverage and claim status and identifying vendors to assist with repairs, while responding to the needs with financial grants to assist with recovery.

“The process has been slow as folks have been displaced and it takes time to gather information, so we anticipate working for a few more months to make sure assistance is provided.”

Through 2022, the Disaster Relief initiative has brought help and hope to those impacted by storms, floods, and wildfires all over the United States, in areas like Louisiana, New York, and Oregon, providing over $3.1 million in funding.

$8.5 million in Programming Grants Awarded

November 15, 2022

The Craig H. Neilsen Foundation is proud to announce grants, totaling $8.5 million, to over 70 organizations serving people affected by and living with spinal cord injuries (SCI) throughout the United States and Canada.

From a Mississippi youth wheelchair league to a dance school in Massachusetts to a Maryland group supporting the newly injured and their families, our 2022 grantees are as diverse as ever.

Through our Creating Opportunity & Independence (CO&I) portfolio, the Neilsen Foundation supports organizations that provide programs for those living with SCI of all ages and backgrounds. Many of these include community-driven activities and services that fill important gaps in opportunities for the disability community.

Each year, programs supported by CO&I provide opportunities for thousands of people living with SCI to engage in their communities and improve their quality of life. The wide reach of the Neilsen Foundation’s partnerships includes organizations involved in arts, sports and recreation, independent living, rehabilitation, assistive technology, employment, and education, helping them continue with programs, establishing new projects, and building capacity.

Our Founder, Craig H. Neilsen, set the example of giving to worthwhile causes, rehabilitation clinics, and even individuals in need by launching the Foundation’s programmatic funding with three grants given to programs in Nevada and Minnesota. The portfolio has thrived, funding over 70 new grantees this year, and striving to champion community integration, remove barriers, promote access and self-efficacy, and increase health and wellness in rehabilitation and in the community, among other things.

The portfolio is ever evolving and looking for ways to support the SCI community by partnering with innovative non-profits and funding amazing projects.

“The overall impact of the CO&I portfolio on individuals with spinal cord injuries, from large and small organizations, is really impressive to observe,” Program Officer Darrell Musick says. “Grantees are providing education, accessibility, and life-changing opportunities to participate in activities across the health, wellness, and recreation spectrum.”

Neilsen Scholarship Program Going Strong After Eight Years

The Craig H. Neilsen Foundation currently partners with 17 schools across the United States to reduce socioeconomic barriers in higher education. Through the Neilsen Scholarship Program (NSP), students with spinal cord injuries (SCI) are supported in and out of the classroom.

Neilsen scholars at the University of Illinois, Urbana-Champaign

Select institutions are invited to participate in the NSP in the hope students will be inspired by the example of our Founder, Craig H. Neilsen, and become leaders and visionaries. Launched in 2014 with eight universities and colleges, the program has helped 242 students with SCI in their educational endeavors. Pictured right: Neilsen Scholars at the University of Illinois, Urbana-Champaign.

The scholarship provides tuition and fees for the duration of the students’ education in their selected degree program, and supplemental support funds to eliminate barriers to academic success, including housing and living costs and assistive technology and personal care needs. The academic institutions that partner with the Foundation also receive support which benefits students on campus living with a disability.

In recent years, the Foundation has helped its partner institutions support students with SCI, so they can pursue their higher education dreams and goals without the concern of financial hardship.

Every four years, members of an advisory board assist Neilsen Foundation staff in the selection of the institutions that will be invited to take part in the Program. Selected colleges and universities then provide student recommendations to the Foundation.

Lyndsay Cumberland, the Assistant Director of Corporate & Foundation Relations at the University of Alabama, Tuscaloosa, says, “Most of our students in the Neilsen Scholarship Program would not be able to pursue higher education without the help from the Program.

“Because of the NSP, these students are less worried about finances and are able to enjoy the college experience as every other student on campus.”

She adds, “Most of our students in the NSP are also athletes in the Adapted Athletics program, which has grown from five to over 30 athletes, who are winning national championship titles.

“They have the opportunity to play in a facility dedicated to them—the first of its kind on a college campus in the United States.”

Bryan Hilbert, the Disability Resource Center Director at the University of Nevada, Las Vegas, explains the scholarship and supplemental funding has allowed the institution staff and administration to “place an emphasis on supporting students with spinal cord injuries.”

“Designing our spaces and processes to be welcoming to those with SCI has caused us to reimagine what inclusivity means,” he adds.

“The greatest help is empowering individuals who have the potential to be great students, advocates, and leaders who haven’t been able to develop those abilities due to a lack of funding or access to education.

“The Neilsen Scholarship gives those students the access and support they need to change their lives and impact their communities.”

Craig H. Neilsen Visionary Prize Announced

October 20, 2022

Yannick Benjamin, Joshua Basile, Esq., and Dr. Oluwaferanmi O. Okanlami are awarded $1 million each in honor of Craig H. Neilsen for their contributions to the world of SCI.

Los Angeles, CA – Today, the Neilsen Foundation, the largest private funder of spinal cord injury (SCI) research, education, clinical training, and programmatic support in the U.S. and Canada, announced the recipients of the 2022 Craig H. Neilsen Visionary Prize. This year’s Visionary Prize celebrates Yannick Benjamin (New York City), Joshua Basile, Esq. (Washington, DC), and Dr. Oluwaferanmi “Feranmi” Okanlami (Ann Arbor, Michigan), three trailblazers who honor Craig H. Neilsen and his legacy through their values and work ethic.

Craig H. Neilsen overcame barriers during his lifetime and empowered others to do the same. Prize recipients reflect many of the ideals important to Mr. Neilsen during his lifetime: they are unafraid to take bold risks, possess boundless determination and passion, and can inspire others. Established in 2020, the Visionary Prize is awarded annually to important voices whose contributions have improved the lives of those affected by SCI.

“The Neilsen Foundation is honored to award Yannick, Joshua, and Feranmi the 2022 Visionary Prize,” said Kym Eisner, Executive Director of the Neilsen Foundation. “These three individuals exemplify the values of the Neilsen Foundation and the dedication our founder had to enrich the lives of people living with SCI. They have already made an extraordinary mark in their efforts to change the world for the better and we can’t wait to see what they do next.”

“My father would be so proud to see the influential contributions of Yannick, Joshua, and Feranmi,” said Ray Neilsen, Co-Trustee & Chairman of the Board. “The Visionary Prize reflects my father’s extraordinary determination, inexhaustible passion, and ability to inspire those around him. We look forward to following this year’s incredible awardees as they continue with their impressive careers.”

Yannick Benjamin is a New York City-based sommelier and proprietor of Contento, a restaurant in East Harlem committed to accessibility for all. In 2003, a car accident left Mr. Benjamin paralyzed but that did not stop him from pursuing his dreams of attending college and becoming a world-class sommelier. He is currently an Advanced Sommelier with the Court of Master Sommeliers, actively working at the University Club, and he has also been employed at Le Du’s Wines for over seven years.

As the cofounder of Wheeling Forward, a powerhouse nonprofit driving progress in the disability community, Yannick has worked tirelessly to bring awareness and visibility to seldom-heard voices in the wine industry and to champion inclusivity. He brings his energy and passion to East Harlem, where he has realized his dream as the co-owner of Contento.

As a para-athlete, Mr. Benjamin also competed in several races, including the New York, Boston, and Chicago marathons. His deep connections in the wine world have helped Wheeling Forward build a broad base of supporters and inspired many sommeliers and wine distributors to give back to the community.

Joshua Basile, Esq. is a DC-based attorney, Founder of Determined2Heal and SPINALpedia, and Community Relations Manager of accessiBe. Joshua decided to pursue a legal career to help and fight for the catastrophically injured after suffering his own traumatic injury in 2004. Mr. Basile’s life changed forever during a family vacation when he suffered a severe spinal cord injury resulting in permanent paralysis. As a quadriplegic, he knows firsthand the daily struggles of the catastrophically injured and the importance of improving one’s quality of life.

After graduating magna cum laude from law school and passing the Maryland and District of Columbia bar, Mr. Basile joined Jack H. Olender & Associates. He also cofounded SPINALpedia.com, an online social mentoring website that allows the spinal cord community to motivate each other. In 2019, Mr. Basile was inducted into the National Disability Mentoring Coalition’s Susan Daniels Mentoring Hall of Fame. His competitive attitude also continues outside of his legal career; he is an inventor of both a device and a sport. He holds a patent for a golf device he created that allows those with physical limitations to putt a ball anywhere on a green or a miniature golf course. His putting device is used in Slingshot Golf, the sport he created, which allows participants of all abilities to play against each other. Josh is also one of the driving forces behind accessiBe’s non-profit initiative accessFind, the world’s first search engine for accessible websites.

Dr. Oluwaferanmi “Feranmi” Okanlami is an Assistant Professor of Family Medicine with a joint appointment in the Department of Physical Medicine and Rehabilitation at the University of Michigan. He serves as the Director for Medical Student Success in the Office for Health Equity and Inclusion and in 2021, was named the Director of Student Accessibility and Accommodation Services. Born in Nigeria before immigrating to the U.S. at a young age, Dr. Okanlami earned a master’s degree in Engineering, Science, and Technology Entrepreneurship from The University of Notre Dame, and completed his Family Medicine Residency at Memorial Hospital in South Bend, Indiana. Feranmi received his MD from the University of Michigan before matching into Yale University’s Orthopedic Surgery Residency Program.

At the beginning of his third year at Yale, he suffered a spinal cord injury, paralyzing him from the chest down. After two surgeries and intense rehabilitation, he regained some motor function.

Nationally, Dr. Okanlami serves as the Disability Issues representative on the Steering Committee for the Group on Diversity and Inclusion at the Association of American Medical Colleges, while sitting on the National Medical Association’s Council on Medical Legislation. He was also selected by the White House Office of Public Engagement to participate in the Health Equity Leaders Roundtable Series and was honored with one of Michiana’s 2017 Forty Under 40 awards. Dr. O, as he is affectionately known, has a catchphrase “Disabusing Disability,” which he uses to demonstrate that DISability doesn’t necessarily mean INability, and serves the goal of creating a health system that is both inclusive and accessible for all. In 2020, he stepped up as the faculty lead for the COVID-19 hotline for the University of Michigan and was appointed to the COVID Campus Response Committee. He also serves on the Council for Medical Legislation at the National Medical Association.

Finding Our New Normal

August 17, 2022

As students are getting ready to go back to school and communities continue to evolve strategies to navigate the next COVID variant, our desire to “get back to normal” is stronger than ever. However, rather than going back, let’s reframe our narrative and, instead, find ways to collectively move forward.

At the Neilsen Foundation, our values inform our choices.  They build on Craig’s resiliency and drive for greatness—and are foundational to who we are and aspire to be.  Our new normal allows Creating Opportunity & Independence applicants the ability to request longer grant terms, as well as increased funding levels in both of our research portfolios.  We now proudly provide funds so our grantee partners can include the cost of accommodations for people with a disability in their grants.  In the coming months, you’ll also see increased communication efforts because hearing from and collaborating with our grantee partners, is critical to the Foundation fulfilling its mission.

Over the last 2½ years, the pandemic forced us to change our practices, find creative solutions to new problems, and discover the strength to break through barriers.  These hard-fought lessons have informed who we are today. Now—together—as we work to create a future that ensures people affected by and living with spinal cord injuries can live full and productive lives, I invite you to Imagine What’s Possible.

Be well,

Kym Eisner

Kym Eisner
Executive Director

Imagine What's Possible

May 20, 2022

Spring is in the air. As skies clear, flowers bloom, and the opportunity to see one another expands, I am putting on my pandemic-colored glasses and moving forward.

Ensuring our partners and grantees have the support they need, both time and money, and increasing relationship-building opportunities with the Foundation staff continue to be top priorities.  We recognize that smaller nonprofits fear they won’t have the capacity to keep the lights on, that researchers are challenged finding basic supplies for their labs, and that students living with spinal cord injuries are faced with the decision of going back to in-person learning, even when COVID is a threat to their health and wellbeing.  We remain committed to listening to and trusting in our partners.  Where there is an opportunity for us to reduce barriers, be more hands-on, and advance your opportunities, we’re in!

The Neilsen Foundation Board and staff have been looking ahead, thinking about what the world of SCI might look like a decade from now.  Here are a few topics we are currently discussing:

How has research been translated into practice?

How can individuals with a newly-sustained injury more easily re-integrate into their communities?

And, with every issue we are trying to solve, are people with lived experience engaged in the process?

If we are going to achieve our vision of a future where individuals living with a spinal cord injury, and those who care for them, live full and productive lives as active participants in their communities, we’ll need to be creative, inclusive, and collaborative.  Continuing to build a healthy and thriving community is only possible if we work together to imagine what’s possible.

Be well,

Kym Eisner
Executive Director

Looking Ahead to 2022

December 6, 2021

To our collaborators, colleagues, and friends,

I hope everyone had a wonderful Thanksgiving holiday and took the opportunity to spend time with family and friends. When my kids were little, we went around the Thanksgiving table and shared what we were thankful for. Who knew that just being at the same table with those we love would be so high on our list this year? The pandemic has continued to challenge “getting back to normal,” but as 2021 quickly comes to an end, I want to share some of the lessons you have reminded us of throughout the year.

  • Challenge your own assumptions
  • Default to trusting one-another
  • Engage with your community
  • Partner with people who have lived experience
  • Don’t be afraid to ask for help
  • Share your knowledge
  • Communicate freely
  • Accommodations that promote equity are a right, not a privilege
  • Lead by example
  • And—Imagine what’s possible!

You may read this list and see some ideas that resonate.  Or you may read this list and think it doesn’t apply to you.  No matter how you accepted or dismissed the concepts above, I encourage you to read it again and ask yourself, “Can I be better, can I do more?”  Is there something that you rejected, but on second look, might not be so unreasonable?  Is there something you’re passionate about that wasn’t mentioned?  If so, find ways to share that message—you never know when your words will inspire others.

I am a firm believer that, together, we can create a future that ensures people affected by and living with spinal cord injuries live healthy and productive lives in their communities.  But, to make this vision a reality, we need to put our ideas into action.  In 2022, look for collaborative partnerships; challenge yourself to develop creative approaches; and break down barriers with more inclusive attitudes.

From all of us at the Neilsen Foundation, we wish you a happy, healthy, and safe holiday season.

With profound appreciation,
Kym