U2FP CureCast

We’re continuing our conversation around spinal cord stimulation in part 2 of this multi-episode series with Sam Maddox, a long-time SCI science writer and U2FP’s Scientific Advisory Board Director. Today we’re going to focus on what’s happening currently with some spinal stimulation researchers, what clinical outcomes they are targeting, how they are connected to each other and how their approaches differ. Additionally, you’ll hear Matthew and Sam share the insight they gained from their time at a recent neuromodulation conference, The Moving Beyond Isolated Systems Symposium. This symposium was the first-ever multi-disciplinary, multi-generational gathering of the international e-stim field, organized by Susan Harkema and David Magnuson of the University of Louisville. (You can read the in-depth write-up Sam produced on this event in the More Resources section below.) We hope this series on spinal stimulation provides a mix of basic and higher level concepts, as well as addressing the big questions that are still on the table. We’re always trying to make these conversations better and the only way that we can do that is with your feedback. Share your thoughts by emailing us at [email protected]. Find more resources, including related scientific studies and past conversations we've had with researchers studying spinal stimulation, go here: https://u2fp.org/get-educated/curecast/episode-72.html

Jason and Matthew talk with U2FP Scientific Advisory Board (SAB) Director and Science Writer, Sam Maddox in the first part of our series on Spinal Stimulation. We’ve been thinking about the need for a discussion on what spinal stimulation is, why it's been studied so extensively, who are the influential scientists and players in the space, the trajectory of where and how it started as an exploration for restoring function in SCI, and - most importantly - what this all means for folks with a spinal cord injury. This conversation is part one of a series that kicks off with some history, background and milestones in the stim field. We will follow up on subsequent podcasts with where it appears to be going, recent advancements in the research, and the various companies working to bring their version of spinal stim to market. If you have not listened to our previous podcasts covering spinal cord stim, check out our interviews with Susie Harkema, Gregoire Courtine, David Darrow, Chet Mortiz, Kendall Lee and Kristin Zhao, and also the interview with the first women to be implanted with epidural stimulators; Kathy Allen and Sandra Mulder. (Visit this episode's webpage for access to all these resource links: https://u2fp.org/get-educated/curecast/episode-71.html) --- Guest Bio: Sam Maddox (of Los Angeles, California) is former Knowledge Manager and spinal cord injury research writer for the Reeve Foundation. He is the author of several books related to chronic health and paralysis, including four editions of the Paralysis Resource Guide, published by the Reeve Foundation. In 1992 Maddox wrote the first comprehensive history of spinal cord injury research, The Quest for Cure: Restoring Function After Spinal Cord Injury. He wrote and published the widely acclaimed resource book Spinal Network, and is founder of New Mobility magazine. Maddox was a panel member on The Consortium for Spinal Cord Medicine, which develops and disseminates evidence-based clinical practice guidelines to professionals and consumers. He is currently writing and producing books as a resource for the newly injured: SCI: First 90 Days. He has been a reporter for many magazines, including Time, Money and People. Maddox is a graduate of the University of Colorado, where he taught in the School of Journalism.

Jason and Matthew interview Jim Harris, a wilderness photographer who was injured in 2014. Jim was recently featured in Outside Magazine regarding his experience with psilocybin and its connection to some restored mobility. This conversation is a follow-up to our previous podcast with Dr. Jessica Nielson on the potential use of psilocybin after SCI. However, in this episode, we specifically focus on one of our community member's direct experience with exploring the use of psychedelics and his advocacy to decriminalize their use in Colorado. Guest Bio Before sustaining a spine injury at the end of 2014, Jim Harris made his living from hard days in the mountains. Following six years of teaching wilderness mountaineering courses, Jim began shooting photos, video, and writing for clients like National Geographic, Camp 4 Collective, Powder Magazine, and outdoor brands. His work reflects a deep firsthand expertise of wilderness travel and DIY adventure. Since being paralyzed, Jim has pushed towards a remarkable recovery and is finding fresh opportunities to be involved in adventure storytelling. More Resources - Jim Harris' Website: https://perpetualweekend.com/ - Check out this survey on psychedelics and spasticity from the Miami Project: https://umiami.qualtrics.com/jfe/form/SV_2lf8kbdV7ogHxjg

The research of psychedelics as a therapeutic for anxiety, depression, and PTSD has gained a lot of traction over the last decade. Given their potent effects on the nervous system, what are the unique benefits and possible side effects of psychedelics for the SCI population? And further, what is their potential to elicit functional recovery? If you ask the community, it doesn’t take long to find anecdotal evidence that the benefits go beyond just the psychological realm. Read Jim Harris’ account in Outside Magazine, as an example (https://www.outsideonline.com/outdoor-adventure/exploration-survival/psychedelics-research-paralysis-treatment-jim-harris/). In this episode, Matthew and Jason speak with Jessica Nielson to explore the potential psychedelics may hold for the SCI community. Jessica is an SCI and Bioinformatics researcher at the University of Minnesota. She is also the Executive Director of Psychedelic Society of Minnesota. They discuss psychedelic research and where it could cross paths with spinal cord injury. They also discuss the hypothesized mechanism of psychedelics and whether they might or might not bring about some of the range of changes that SCI self-experimenters have reported. Guest Bio Jessica Nielsen is a tenure-track Assistant Professor in the Department of Psychiatry & Behavioral Sciences, and Core Faculty in the Institute for Health Informatics at the University of Minnesota, and is the Executive Director of the Psychedelic Society of Minnesota. Jessica completed doctoral training in the lab of Dr. Oswald Steward at UC Irvine focusing on animal models of spinal cord injury, and did postdoctoral training with Dr. Adam Ferguson at UCSF, where she developed a preclinical database of SCI studies that seeded the Open Data Commons for SCI. During her time at UCSF, she began conducting research on the psychedelic tea, ayahuasca, to investigate whether it might be an alternative treatment for post-traumatic stress disorder (PTSD). She is currently conducting computational psychiatry research to identify more precise phenotypes of PTSD from large clinical data repositories, and is Principal Investigator of the first psilocybin clinical trial at the University of Minnesota. She is currently co-developing a new survey study around how people with SCI respond to psychedelics, to inform the community about risks and benefits to promote harm reduction as the hype around psychedelics reaches a broad range of patient populations interested in using psychedelics to alleviate suffering.

Matthew and Jason talk with Ann Van de Winckel, a researcher and physical therapist at the University of Minnesota, Medical School, who is doing fascinating work to help restore body awareness below the level of injury - yes, you read that right - using cognitive multisensory rehabilitation (CMR). Dr. Van de Winckel’s work is showing reductions in neuropathic pain, sensation and motor recovery with people who’ve suffered from spinal cord injury. This discussion spans Ann’s unique blending of Eastern and Western medical strategies, how her current research is developing, and the opportunities for combining CMR with other interventions to gain functional recovery for those with SCI. - Watch Dr. Van de Winckel’s presentation on neuropathic pain relief from our 2021 Symposium here: https://u2fp.org/get-educated/annual-symposium/video-library/2021-presentations-2.html - Find more information on her research and check on upcoming research trials here: med.umn.edu/bio/physical-rehab-main/ann-van%20de%20winckel Guest Bio Ann Van de Winckel is Assistant Professor in the Division of Physical Therapy and in the Division of Rehabilitation Science, Department of Rehabilitation Medicine, Medical School, University of Minnesota. She is the Director of the Brain Body Mind Laboratory. Her research focus is to investigate brain mechanisms of how mind and body approaches may work to improve daily life of people with chronic conditions and chronic pain. She has 22 years of experience in body awareness-related brain imaging research and research about the mechanisms of Cognitive Multisensory Rehabilitation, which is a physical therapy approach that focuses on recalibrating body awareness in adults with neurological conditions and/or with chronic pain. More recently, her research has been geared towards implementing body awareness-related interventions in clinical trials and in brain research in adults with low back pain, in adults with spinal cord injury and in adults with spinal cord injury-related neuropathic pain.

This episode features Thomas Cloyd, who is competing in the Bank of America Chicago Marathon for Team U2FP next Sunday, October 9th. Thomas’ reasons for joining Team U2FP go well beyond just this race. His history with U2FP goes back almost a decade when he helped Matthew Rodreick and others in the SCI community pass the SCI/TBI Research Grant bill here in Minnesota in 2015. That bill was the catalyst for U2FP’s Cure Advocacy Network (CAN), which has now passed over $25M in SCI research funding via these legislative advocacy efforts. And since it’s hard to get grant money to lobby state legislatures, Team U2FP is one of our primary sources of funding for CAN. Thomas speaks to the power he felt being a part of that first organizing effort, how he completed his first marathon ever for Team U2FP in a quad rugby chair, and some of the unique benefits - both physically and emotionally - that he saw in himself while training for this event and why you should consider testing your own limits on behalf of the SCI community. Consider donating to Thomas’ race efforts here (https://u2fp.app.neoncrm.com/np/clients/u2fp/campaign.jsp?campaign=106&fundraiser=10006914&). And if you’re inspired to throw down and join Thomas as a member of Team U2FP, either in the Chicago Marathon next year, or in a physical challenge or race of your choosing, email us here: [email protected]. Want to hear more from Thomas? Check him out on episodes 52 and 53 of CureCast - our popular series on sexual function where he participated in a candid discussion about sex after SCI.

Jason and Mathew talk with Andrew Park, a clinician-researcher at Craig Rehabilitation Hospital in Denver, Colorado. Jason met Andrew while in Denver for one of U2FP’s Cure Advocacy Network stakeholder meetings last February. During that meeting, Andrew’s passion for his work became evident. In this podcast, we talk about what’s behind that passion, including: his path to becoming a researcher; his research interests and philosophy; a system-level path to functional recovery for the SCI community; and much more. Join us for this energetic and insightful discussion. Finally, we want to acknowledge that while Dr. Park works at Craig Hospital, our conversation was a reflection of Andrew’s personal opinions and not the opinions of Craig Hospital. Bio: Andrew Park, MD, is a physician in spinal cord injury (SCI) medicine and an early investigator at Craig Hospital. In his role, he provides clinical care to individuals with SCI on both an inpatient and outpatient basis. He performs translational research at Craig Hospital and holds joint appointments at the University of Colorado Department of Physical Medicine and Rehabilitation and Veterans Affairs Spinal Cord Injury and Disorders Center (VA SCI/D). He is performing research at both Craig Hospital and VA SCI/D with parallel research focused on inflammatory mediators of secondary complications after SCI. These studies laid the groundwork for his research interests at the intersection of clinical care and understanding of mechanisms related to immune dysfunction after SCI.

Jason and Matthew talk with Lucia Webb, U2FP’s Operations Director. We focus on a seemingly minor aspect of our work - our racing and fundraising initiative, Team U2FP - and breakdown why it’s critical for so much of what we do, especially the legislative bills we’ve passed through our Cure Advocacy Network. We talk about the impact of Team U2FP for everyone - not just marathon racers and wheelers - as well as opportunities to become involved in and support our work.

Jason and Matthew interview Dr. Camillo Castillo, Physical Medicine and Rehabilitation Physician at Frazer Rehabilitation Hospital in Louisville KY along with his Clinical SCI Navigation team: Emily Coons, Brendan Doksa and Heather Connor. We are raising a simple question about the introduction of spinal cord stimulation (SCS) to the clinic: are we ready to receive it? What will that look like? Who follows the person with the stimulator? Who sets the parameters for stimulation? How is it paid for? And what part of SCI is it intended to treat? Many of us might assume that these questions will work themselves out, but for anyone who has lived through a SCI knows that things don’t simply work themselves out. So, what can we as a community do to influence the ways in which innovative and curative treatments, not just SCS, unfold for our community, all of our community? Take a listen and please send us your feedback at [email protected] Read Dr. Castillo's Bio on our website: https://u2fp.org/get-educated/curecast/episode-64.html

Jason and Matthew interview Dr. Uzma Samadani, a neurosurgeon working in Minneapolis, Minnesota. Dr. Samadani participated in the EStand trial (https://www.estand.org/) along with David Darrow, Ann Parr and Taye Nettoff. We decided to interview Dr. Samadani based on her experience of implanting epidural stimulators in people with SCI - as part of her clinical practice - instead of the current approach, which is to limit access to only those enrolled in a relevant clinical trial. We talk about her process for making this decision and its attendant complexities, as well as her experience with the EStand trial. We encourage you to listen back to our interviews with spinal stimulation researchers: - David Darrow (Episode 30) - Susan Harkema (Episode 41) - Gregoire Courtine (Episode 44) - Jason Carmel (Episode 45) - Chet Moritz (Episode 13) - Andre Krossioukov (Episode 26) - Mayo Clinic researchers Kendall Lee, Kristin Zhao and Igor Lavrov (Episode 11) Revisiting these conversations will give you better context and a broader understanding of today’s discussion with Dr. Samadani and its implications. Also, please listen to the interview we conducted with SCI community members, Kathy Allen and Sandra Mulder (Episode 31), both participants in the EStand Trial. Lastly, check out our upcoming Science and Advocacy Symposium (register here) which will feature spinal stimulation presentations from Drs. Reggie Edgerton, Susan Harkema and David Darrow.