Charitable organizations are often founded in a beloved individual’s name and dedicated to a particular health condition. What’s less common is one with the level of endowment and annual giving of the Craig H. Neilsen Foundation, a private foundation devoted to helping people with spinal cord injuries.
Founded in 2002 by its namesake, who passed away in 2006, the foundation really picked up momentum in 2011, when its endowment was fully funded. Since then, the foundation has shot up from around $7 million a year to $27 million in 2016, making it a force in science research related to spinal cord injuries, as well as improving quality of life for individuals with them. According to the NIH, there are about 12,000 spinal cord injuries a year in the United States.
With $456 million in assets, Neilsen is a well-heeled grantmaker with a laser-like focus, making it a significant player in its niche—the name pops up in relation to new surgical techniques, brain-to-computer interfaces, Paralympics racing wheelchairs and instruments for quadriplegic musicians.
Like so many foundations dedicated to medical research of some kind, the story behind Neilsen is a personal one. Craig Neilsen was a successful developer who founded gaming company Ameristar Casinos, Inc. He was also a quadriplegic, following a spinal cord injury from a car crash in 1985.
His life experience and passion for the issue led to the foundation, which has a mission of supporting “programs and scientific research to improve the quality of life for those affected by and living with spinal cord injury.”
The grantmaking is, however, spread across a handful of priorities. A little over half of funding goes to its program called Spinal Cord Injury Research on the Translational Spectrum, through postdoc fellowships and research project grants. Two other, smaller program areas are devoted to research as well, the first going toward behavioral, social and psychological factors affecting people with spinal cord injuries. And there’s a Spinal Cord Injury Medicine Fellowships program designed to support more physicians focusing on this field.
The second-largest focus is the Creating Opportunity and Independence program, which backs service providers and innovative projects to improve quality of life. This kind of funding goes to things like educational projects and assistive technology.
The foundation remains in the family, to some extent—Craig Neilsen’s son Ray Neilsen is currently a trustee and chairman of the board—but four out of six trustees are MDs or otherwise come from research backgrounds. Each grantmaking program has its own peer review board, as well.
While there is a strong personal motivation behind the giving, this funder has a significant impact on a niche of research that doesn’t receive a huge amount of support, relatively speaking. NIH funding for research related to spinal cord injury hovers around $80 million annually. There’s also a U.S. Army program devoted to spinal injury research, and other charities funding the topic, like the Christopher & Dana Reeve Foundation or the Travis Roy Foundation.
But at the level Neilsen is funding, it’s one of the biggest sources in the mix, and it's aiming to be influential in the field. According to the foundation’s 2016 annual report: “Honing our ability to be proactive leaders in the field has been a guiding principle for 2016. The foundation can act alone, but the broadest potential for real impact lies in influencing the direction other organizations might take along with us.”