On Our Minds
The Neilsen Foundation staff often find themselves in interesting conversation with colleagues, grantees and members of both the philanthropic and spinal cord injury communities. It’s an exciting time in the SCI field with advances in science and the ongoing discussions about disability inclusion. We value collaboration, the sharing of ideas and developing innovative approaches to solving difficult issues. Periodically we share thoughts and ideas with the hope of creating opportunities for dialogue.
Translation: What Are We Really Talking About?
By: Naomi Kleitman
Translation is carrying an idea from inception to implementation. In health research, this process involves many steps to ensure the safety and effectiveness of new therapies. To succeed, these steps require a strong collaboration between bench scientists developing new therapies and clinicians who know the most about treatment of people with SCI. It should also include the voices of the people for whom the treatments are being developed.
Researchers have made some leaps of faith in moving from the laboratory to clinical testing and made great progress. For instance, spinal stimulation was listed by Science News as #9 in their Top 10 Science Stories of 2018. This is not an end, but a great beginning point for studies now needed to define how the stimulation works to restore function, in whom, and with what additional training, dosing and functional testing. As intriguing as demonstrations of new connections between nerve cells are, functional changes in people are the real goal. We must remain vigilant in asking the hard but important questions about what we need to know to speed safe translation where it is warranted. All clinical trials pose both potential benefits and risks. Studies in people are rarely win or lose – they are most valuable if they are well designed and indicate not only that an intervention worked even a little, but also whether our reasoning to justify the clinical testing was based on strong, sound reasoning. That knowledge will benefit all of our efforts to translate from bench to bedside.
In the News
Helping Others Face a New Way of Life
LAS VEGAS, NV (UNIVERSITY OF NEVADA, LAS VEGAS) - Scholarship donors look forward to their student recipients finishing school and going on to lead inspiring, fulfilling lives. But one Neilsen Foundation Scholar is making a big difference already. Meet Bradley Boe.
Website on Clinical Trials is Online
LONDON, UK (Wingsforlife.com) - A team of experts developed the website SCITrialsFinder.net. There, patients can easily enter their level of injury and then find out where appropriate clinical trials are. Here are the 3 most important questions.
Kessler Foundation Hosts Conference on Sexuality and Relationships after Spinal Cord Injury
EAST HANOVER, NJ (CISION PRWeb) - A two-day conference held at the Wilshire Grand Hotel in West Orange, NJ on June 21 and 22, 2019, focused on issues related to sexuality and relationships after spinal cord injury. A one-day conference for people with spinal cord...
Pitt and CMU researchers discover how the brain changes when mastering a new skill
PITTSBURGH, PA (EurekAlert!) - Mastering a new skill - whether a sport, an instrument, or a craft - takes time and training. While it is understood that a healthy brain is capable of learning these new skills, how the brain changes in order to develop new behaviors is...
Experimental Spinal Cord Treatment Helps Texas Man Regain Some Motion After Paralyzing Accident
BOSTON, MA (Wbur.org) - Kent Stephenson is on a treadmill, working to put one foot in front of the other as a team of trainers help guide his legs. There's a harness holding him upright, but Stephenson is, in a sense, walking again - 10 years after a motocross...
Nonprofit Notebook – April 29, 2019
HARTFORD, CT (Hartford Business.com) – The Gaylord Sports Association received a $15,000 grant from Disabled Sports USA through the Craig H. Neilsen Foundation for adaptive sports programming and equipment for people with spinal-cord injuries.
Advancing Efforts to Hire People with Disabilities Across New York’s Economy
NEW YORK, NY (GothamGazette.com) – In the fairest big city in America, everyone deserves the opportunity to be employed. Unfortunately, the reality is that people with disabilities in the United States are twice as likely to be out of the workforce as their...
Dance/NYC Announces Recipients of Disability. Dance. Artistry Residency Program
NEW YORK, NY (Broadway World.com) – The service organization Dance/NYC and its program partners Gibney and Spaceworks are pleased to announce the recipients of the Disability. Dance. Artistry. Residency Program, made possible by the generous support of the Craig H....
New Tools to Help Women with Physical Disabilities Make Decisions about Pregnancy
ANN ARBOR, MI (Michigan Medicine Blog) - Two recently awarded grants hope to help women with physical disabilities determine whether or not to become pregnant and reduce the associated stigma. Becoming a mother is often a very personal decision for a woman.
University of Calgary studying relationships built during spinal cord injury rehab
CALGARY, ALBERTA (Global News) - The University of Calgary is conducting a new study that takes a closer look at the relationship between spinal cord injury (SCI) survivors and their caregivers. The study is financed by the Craig H. Neilsen Foundation and both the...