U2FP CureCast: Recent Episodes
Matthew Rodreick & Jason Stoffer
Unite 2 Fight Paralysis exists to unite and empower the international spinal cord injury community to cure paralysis through advocacy, education, and support for research. Get Educated and Get Involved.
Many of our discussions about SCI recovery deal with developing research strategies or interventions that are on the horizon. Today, we are discussing an intervention that can restore function right now: nerve transfer. Nerve transfers can be thought of as animating dead wires by redirecting current from live wires. To explain what's actually happening, we’ve brought on Dr. Justin Brown, who has pioneered the field and our friend, Macy Lauren Ledet, a recipient of nerve transfer surgery. Justin has...More info: https://u2fp.org/get-educated/curecast/episode-145.html
Zac Wolfe is known for his grit and determination. He is a great example of how you can live a full life with a spinal cord injury and still maintain the fire to push for better outcomes. A few years ago, Zac enrolled in a Department of Defense, SCIRP-funded clinical trial using transcranial Direct Current Stimulation (tDCS) to improve upper limb function. In this conversation we bring on Zac and the principal investigator of the study, Dr. Ela Plow of the Cleveland Clinic, to discuss how tDCS works along with the details of the study and what function Zac recovered. We also talk about the role of belief and determination in study participants, the importance of advocacy, why siloed thinking hinders research progress, how small functional gains become cascades for additional recovery and much more. This is an interesting conversation that I know you’ll enjoy, so let’s get to it! More info: https://u2fp.org/get-educated/curecast/episode-144.html
AI with our guest Abel Torres-Espín. If you haven't listened to part one, you can find the link on our episode page. In today's episode, we wanted to focus more on what Abel is currently working on, including a recent publication of his, and continue the discussion about AI's limitations, opportunities, it's slop, biases, and most importantly what we can do to utilize artificial intelligence for deepening spinal cord injury research in optimal ways. Again, you'll want to check out the publication we discuss along with Dr. Torres-Espín's research page, both of which are linked on the episode page: https://u2fp.org/get-educated/curecast/episode-143.html
Today we are talking to Dr. John “Kip” Kramer about neuropathic pain. Dr. Kramer is a Principal Investigator and Associate Director of Operations at the International Collaboration on Repair Discoveries or iCORD at the University of British Columbia. His research interests include: Neuropathic pain, anesthesiology, MRI, Outcome measures and clinical trials. In this discussion we cover...More info: https://u2fp.org/get-educated/curecast/episode-142.html
We are very sad today as we re-broadcast this conversation with Reggie Edgerton. You may have heard that Reggie has died. We've lost a brilliant mind, and a long-standing research scientist who was focused on spinal cord injury. Reggie was a frequent presenter at our Symposia and a generous teacher and mentor to those in and outside the academy.We wanted to rebroadcast this episode as a remembrance of him but also because Jason and I were so impressed in this interview with Dr. Edgerton’s relentless curiosity, despite his pedigree and experience. That he was still, all these years later, trying to puzzle over how to improve plasticity after a spinal cord injury using neuromodulation and rehab. It was always a pleasure talking to Reggie. We are very sad that he is gone. I hope you listen to the interview and enjoy just how influential he was to the field of SCI research. Thank you, Reggie! Thank you for all the years of sharing your relentless curiosity with us. It's much appreciated.
M University. We interviewed Dr. Dulin not too long ago about the research funding analysis project that she did in partnership with us. If you haven't listened to that, please check it out. Because that interview wasn’t central to what Jen works on in her lab, we promised her we'd have her back to talk about the scientific work she’s been pursuing for the last 20 years or so. Jen is working on neural stem cells, neural progenitor cells, for the purpose of regeneration, to graft cells into the injured cord in an effort to promote regeneration and restore function of a variety of kinds: motor, sensory, autonomic. This is a great discussion, so let's get into it.
In this episode of Curecast, Matthew Rodreick and Quinn Brett sit down with award winning hip-hop artist Brother Ali, who shares roots in Minnesota with Quinn. The conversation traces his journey from Minneapolis to Istanbul, reflecting on cultural identity, disability, and the power of community. He discusses the challenges and perspectives that come with living with albinism, the importance of art in expressing personal experiences, and the need for informed hope in the face of adversity. The conversation emphasizes the value of communication, the complexities of community, and the shared human experience of loss and resilience.More info: https://u2fp.org/get-educated/curecast/episode-139.html
This conversation explores U2FP's upcoming 20th Annual Science and Advocacy Symposium, reflecting on the past, present, and future of spinal cord injury research and advocacy. Jason and Matthew discuss the significance of this event, the importance of community engagement, and the need for legislative action to restore funding for spinal cord injury research. They describe some of the key speakers, sessions, and the unique opportunity for attendees to participate in advocacy efforts, starting with our in a Roll On The Capital happening on the last day of the conference.More info: https://u2fp.org/get-educated/curecast/episode-138.html
Today we are chatting with Dr. Michael Kilgard, a Researcher and Professor at the University of Texas and the Director of the Texas Biomedical Device Center. Michael is a leading voice in the field of neuroplasticity, our body’s ability to structurally and functionally adapt its nervous system throughout our lifetime. We discuss the potential and limitations of neuroplasticity for functional improvement after spinal cord injury and the role of Vagus Nerve Stimulation (VNS), in particular. We also cover the...More info: https://u2fp.org/get-educated/curecast/episode-137.html
Today we are talking with Dr. Nathan Makowski, a researcher at the VA Medical Center, Case Western Reserve University, and the MetroHealth System in Cleveland, Ohio. Nathan's research specializes in the development of neuroprosthetics and the evaluation of their capacity to improve mobility outcomes after paralysis. Separate from his research roles at those institutions, Nathan is also the board chair for the non-profit organization, GiveAHand.tech. We discussed the idea of using an open-source mechanism to...More info: https://u2fp.org/get-educated/curecast/episode-136.html
Today, we're talking to Dr. David Darrow for a second time. Check out episode 30 for our first discussion. David is a neurosurgeon and assistant professor in the departments of neurosurgery and psychiatry at the University of Minnesota. Many of you will also know that he is a researcher and the primary investigator of the successful and ongoing E-Stand trial, which uses epidural stimulation and optimization protocols for delivering functional outcomes for the SCI community. We discussed the E-Stand trial, how it's progressing, and highlights from its now eight years of running. We also talk about the FDA and the quandary of determining what is meaningful in the eyes of research participants, as well as with regulators. And we get into spinal cord stimulation data sharing, the exciting horizon of combinatorial therapies, and much, much more. As you will hear on this call, David is a smart, innovative, forward-thinking ally of the SCI community. More info: https://u2fp.org/get-educated/curecast/episode-135.html
In this conversation, Dr. Michael Fehlings discusses his journey into neurosurgery, focusing on spinal cord injury and the challenges of balancing clinical practice with research. He emphasizes the importance of community collaboration and innovative approaches in clinical trials, particularly in the context of regenerative medicine. Dr. Fehlings also highlights the significance of understanding secondary injuries and the impact of Riluzole in spinal cord injury treatment. He advocates for a global statistical framework to...More info: https://u2fp.org/get-educated/curecast/episode-134.html
In this episode, we reflect on the power of showing up—not just physically, but with purpose, passion, and skill. We're just getting back from Madison, Wisconsin, where our incredible advocates continue to show up for spinal cord injury legislation there. Our guest today is Adrien Cohen, the head of SCI Ventures - a philanthropic venture fund for spinal cord injury. Adrien dove into this work after his brother sustained a spinal cord injury, bringing his unique expertise in...More info: https://u2fp.org/get-educated/curecast/episode-133.html
Today we are talking to Mason Branstrator in the second of a two-part series on supporting general wellness while living with a Spinal Cord Injury. Quinn Brett, U2FP’s Development and fellow wellness pursuer is joining me for the discussion. Mason Branstrator is a dynamic and influential personality in the world of Spinal Cord Injury and his mission is to improve life for our community in any way that he can. Mason’s social media presence is one platform that he uses to accomplish this goal. His reels grace my Instagram feed from time to time and I am consistently impressed with his content, especially as it pertains to health and wellness. In light of the wear and tear that full time advocacy can have on our population, it is important to remember to take care of ourselves so that we can keep showing up to the front lines and maintain our general quality of life. In these two episodes we discuss low-cost or free, accessible tools for self care that have been staples for myself, Quinn and Mason. We frame this discussion using the 6 Pillars of Lifestyle Medicine, which are: Nutrition, Exercise, Sleep, Stress Management, Substance Management and Relationships or Purpose. In this episode we cover the last three pillars.
Today we are talking to Mason Branstrator in the first of a two-part series on supporting general wellness while living with a Spinal Cord Injury. Quinn Brett, U2FP’s Development and fellow wellness pursuer is joining me for the discussion. Mason Branstrator is a dynamic and influential personality in the world of Spinal Cord Injury and his mission is to improve life for our community in any way that he can. Mason’s social media presence is one platform that he uses to accomplish this goal...More info: https://u2fp.org/get-educated/curecast/episode-131.html
Today, we’re joined by Dr. Evan Joiner from Columbia University for a truly fascinating conversation about spinal cord stimulation—but we start somewhere completely unexpected. Before becoming a neurosurgeon, Evan actually began his career as a soap opera actor. Yep, you heard that right. We dive into how that unlikely path led him into medicine, and ultimately, to neurosurgery. Along the way...More info: https://u2fp.org/get-educated/curecast/episode-130.html
Today we are talking with Dr. Chase Cornelison, an Assistant Professor in the department of Biomedical Engineering at the University of Massachusetts, Amherst. Chase brings his unique perspective as a chemical and biomolecular engineer to the problem of spinal cord injury. The Cornelison lab investigates how...More info: https://u2fp.org/get-educated/curecast/episode-129.html
Today we are having a conversation with Alexander “Sasha” Rabchevsky. Sasha is many things: a professor, a researcher, a paraplegic, and a U2FP board member. He is also one of the old guard of research advocates. And he is frustrated...More info: https://u2fp.org/get-educated/curecast/episode-128.html
Today we are talking to Drs. Dimitry Sayenko and Adam Thrasher about their SCI humanitarian project in Tanzania called “Peak to Peak.” Dimitry is an MD, PhD and an associate professor in Neuromodulation and Neurosurgery at Houston Methodist Hospital, in Houston, Texas. We interviewed him previously about his work in episode 93, which I encourage you to check out. Adam is a PhD Researcher, Associate Professor and Associate Chair of the Department of Health and Human Performance at the University of Houston, in Houston, TX.Dimitry and Adam are long time friends and colleagues, and they saw Adam’s sabbatical at the Nelson Mandela African Institute of Science and Technology in Tanzania as an opportunity to More info: https://u2fp.org/get-educated/curecast/episode-127.html
In this episode, we have another insightful conversation with Dave Marver, CEO of ONWARD Medical. We discuss their FDA cleared transcutaneous stimulation device, the ARC-EX, as well as their other devices in the pipeline. Additionally...More info: https://u2fp.org/get-educated/curecast/episode-126.html
Today we are talking about bioinformatics with Dr. Abel Torres Espin. Abel is an Assistant Professor and Director of the health data DRIVEN lab at the School of Public Health Sciences at the University of Waterloo in Canada. He has worked with...More info: https://u2fp.org/get-educated/curecast/episode-125.html
Today’s guest is Dr. James Krause. James is a Distinguished University Professor and Director of the Center for Rehabilitation Research in Neurologic Conditions at the Medical University ofSouth Carolina. Dr. Krause has worked in the field of spinal cord injury throughout his career focusing on research designed to improve health, employment, and participation for people with SCI and other disabilities...More info: https://u2fp.org/get-educated/curecast/episode-124.html
Today’s guest is Dr. Chet Moritz. Chet is the CJ and Elizabeth Hwang endowed professor in the departments Electrical and Computer Engineering, Rehabilitation Medicine and Neurobiology & Biophysics at the University of Washington (UW) in Seattle. He also serves as the Co-director for the Center for Neurotechnology. Chet’s work in Transcutaneous Spinal Stimulation (TSS) heavily contributed to the Onward Medical Arc-EX device which recently gained FDA approval.More info: https://u2fp.org/get-educated/curecast/episode-123.html
Today we are re-airing another episode of the Unexpected Journey Podcast. This is such a great, quick little interview with my friend, colleague and Development Director at U2FP, Quinn Brett. In this episode...More info: https://u2fp.org/get-educated/curecast/episode-122.html
On today’s episode, we are re-airing an episode of The Unexpected Journey podcast. This one is an interview of yours truly. It focuses on my journey to SCI advocacy after my accident in 2017. We talk about my life before and immediately after my wreck, and why I became active in this effort for more and better research outcomes. I also talk about the mission, passion and initiatives here at U2FP.More info: https://u2fp.org/get-educated/curecast/episode-121.html
Welcome back to our final episode in this three-part series about the barriers to progress and the treatment of spinal cord injuries. We’re once again joined by neurosurgeon, researcher and lived experience advocate, Dr. Kent New. In this episode, we finish up our discussion of the many barriers to developing treatments, focusing primarily on regulatory agencies. We then move on to consider potential solutions to the problems we've uncovered in...More info: https://u2fp.org/get-educated/curecast/episode-120.html
This is our version of a special bulletin. And we are interrupting our regularly scheduled programming with this update on a major setback for SCI research. On March 15th, Congress passed a bill which eliminated arguably the most effective Spinal Cord Injury Research program in the world...More info: https://u2fp.org/get-educated/curecast/episode-119.html
Welcome back to our second episode in this three-part series about the barriers to progress in the treatment of spinal cord injuries. We’re once again joined by neurosurgeon, researcher and lived-experience advocate, Dr. Kent New. In this episode, we discuss the problems associated with preclinical, as well as early- and late-stage clinical trials. If you missed it, you can ...More info: https://u2fp.org/get-educated/curecast/episode-118.html
Today’s conversation is the first in a three part series with Dr. Kent New on the barriers to progress for SCI treatments. Kent is a neurosurgeon and researcher who was educated at Georgetown and Duke Universities. His career led him to brain tumor research and clinical practice at the Mayo Clinic in Jacksonville, Florida and then to overseeing clinical research at Ascension St. Vincent’s Hospital. In 2014 Kent suffered a C6 level spinal cord injury from a motor vehicle accident. He is uniquely qualified through his...More info: https://u2fp.org/get-educated/curecast/episode-117.html
Today I’m talking with Jason Biundo. Jason is a lived-experience graduate student at Harvard Medical School. He earned a dual degree in Neuroscience and Biology from the University of Massachusetts, Amherst. It's worth noting that some of that degree was earned from a hospital bed while recovering from his spinal cord injury at Spaulding Rehabilitation Hospital. Beyond this, Jason is a personal friend of ours and U2FP advocate. We begin our conversation exploring...More info: https://u2fp.org/get-educated/curecast/episode-116.html
Today we’re talking with Dr. Jacob Goldsmith. Jacob is a research scientist at the James J. Peters Veterans Affairs Medical Center and an Assistant Professor in the Department of Neurology at the Icahn School of Medicine at Mount Sinai. Our conversation will explore the interesting relationship between Testosterone and Spinal Cord Injury. More info: https://u2fp.org/get-educated/curecast/episode-115.html
In Chapter 8 of Kate Willette’s advocacy bible, “Don’t Call it a Miracle,” she tells us the story of a human cell with special, regenerative characteristics. A cell that, although not a stem cell, perpetually repairs and replaces neural tissue throughout our life. It's called an olfactory ensheathing cell (OEC) or glia (OEG). Parts of the story seemed like the wild west with questionable scientists taking some risky chances, pulling cells out of people's noses and injecting them into their spinal cords, leading to catastrophe. Other, more conservative scientists were doing work that resulted in almost unbelievable results in... More info: https://u2fp.org/get-educated/curecast/episode-114.html
We’re back with round two of stem cells and their application to Spinal Cord Injury, with our tour guide, Alina Garbuzov. In this episode, we wrap up our overview of stem cell types, sources and potential uses in spinal cord injury. We also field some listener questions from part 1 and talk about the work that Alina is doing at the Mark Tuszynski Lab at UCSD. We realized after the fact that these two conversations are...More info: https://u2fp.org/get-educated/curecast/episode-113.html
This is the first in a two-part series covering the role of stem cells in spinal cord injury with Dr. Alina Garbuzov. Along with the experience she brings as a person living with an SCI, Alina is a researcher, working in the Mark Tuszynski Lab at the Center for Neural Repair at the University of California, San Diego. Today's conversation is part one, where we introduce Alina and learn about her...More info: https://u2fp.org/get-educated/curecast/episode-112.html
Today we’re talking with Dr. Jen Dulin from Texas A&M University. Dr. Dulin is a spinal cord injury researcher, but this discussion is a little different as it's not about the active research she’s doing in her lab. Instead, we discuss a project that U2FP pitched to Jen a couple years ago: could we do an analysis on the last 15 years of spinal cord injury research funding trends, themes, and categories, so we can understand - in detail - what's happened over that time period. Dr. Dulin happily said yes to our idea, and we then incorporated several people with SCI to help her with that project. And the data we’ve helped her compile so far looks to be...More info here: https://u2fp.org/get-educated/curecast/episode-111.html
Today we are talking to Arash Bayatmakou and Dale Hull, the organizational heads of NorCal SCI and Neuroworx, respectively. NorCal SCI is a resource non-profit serving the SCI community of northern California. Neroworx is an outpatient rehabilitation center in Salt Lake City, Utah. The main focus of our discussion is the lack of access to outpatient rehabilitation after SCI and the creative collaboration these organizations have crafted to address it. We also chat about their upcoming symposium, which aims to find solutions to the rehab crisis. This conversation is a great example of how the SCI community can identify creative solutions to the problems that affect all of us with lived experience of this injury. More info: https://u2fp.org/get-educated/curecast/episode-110.html
Today we are talking about Brain Computer Interfaces (or BCI) with Luke Bashford and Daniel Kramer. Daniel is a neurosurgeon and faculty member at the University of Colorado, Anschutz. He is also the co-founder of the Neural Engineering Research and Design of Colorado (or NERDco). Luke is a researcher in neuroscience and neurotechnology. He is co-affiliated with the University of Colorado and Newcastle University in the UK. More info: https://u2fp.org/get-educated/curecast/episode-109.html
Today’s guest is Dr. Gordon Mitchell, a professor of neuroscience at The University of Florida. He’s also the founder and director of the University’s Center for Breathing Research and Therapeutics. In this episode, we discuss the role of intermittent hypoxia and its effect on neuroplasticity and recovery of respiratory and motor function. more info: https://u2fp.org/get-educated/curecast/episode-108.html
Today's guest is Dr. Elizabeth Bottorff, a postdoctoral researcher in the biomedical engineering department at the University of Minnesota who is studying sexuality after spinal cord injury. More info: https://u2fp.org/get-educated/curecast/episode-107.html
Today’s episode is a brief primer on how this podcast got started and the kind of conversations you can expect here. You’ll learn about our hosts - Matthew Rodreick and Jason Stoffer – their relationship to SCI, why they do this work, what they hope this podcast can achieve and how this work is an extension of the broader mission of U2FP?Yes, it’s a great place to start for new listeners. But regular listeners may learn something new, particularly about our hosts, Matthew and Jason, and what compels them to keep doing this difficult but necessary work.More info: https://u2fp.org/get-educated/curecast/episode-106.html
Today's episode is my conversation with Dave Marver, the CEO of ONWARD. No doubt you've heard of ONWARD. We discuss the recent news about their transcutaneous stimulation device and their effort to gain regulatory approval, along with the results from their Uplift TRIAL. You'll find links to the trial and related articles on our website to help understand what that is. More info: https://u2fp.org/get-educated/curecast/episode-105.html
This week we are talking with Jake Beckstrom, who is U2FP’s Co-Manager of the Cure Advocacy Network along with our Wisconsin advocate Michael Moore. It's a great conversation where we talk about the drama that took place this year with our legislative work in Wisconsin, where we past our $3M SCI Research in the Wisconsin Assembly, but were unable to then pass it in the Senate. It was a nailbiter that came down to the wire, and Jake and Mike had front row seats for the dramatic, if disappointing end. But they are undeterred. And they stopped by to talk to us about how they are still chasin the cheddar in Wisconsin.
Our guest today is Leann Rees. Leanne is a physical therapist with a PhD from Melbourne, Australia. She’s been in the business of rehab and reintegration for 30 years, 20 of which were spent in spinal cord injury. Leanne’s doctoral thesis examined many aspects and consequences of the media portrayal of spinal cord injury and that is what we’re talking today. This is a fascinating discussion about the historical and contemporary portrayals of SCI and how that portrayal influences the SCI Community and general population. More info: https://u2fp.org/get-educated/curecast/episode-103.html
Today we’re talking with Dennis Bourbeau. Dennis is a highly regarded clinical and academic researcher in the area of bowel/bladder/and sexual function. He works for the Louis Stokes Veterans Administration Hospital and the Metro Health County Hospital in Cleveland, OH. He’s also a faculty member at Case Western Reserve University. Dennis has graciously agreed to come back to chat with us a second time and give us an update on his work, specifically in bladder control devices. We also discuss the critical importance of connecting with and understanding the patient population, the process of getting a device to the market, and much more.More info: https://u2fp.org/get-educated/curecast/episode-102.html
Today we are talking to V. Reggie Edgerton, a Professor Emeritus of Nuerobiology at UCLA and co-founder of the spinal stimulation company, SpineX. Reggie Edgerton is a giant in the field of neuromodulation. Some have called him the father of spinal stimulation, and his influence can be found in...More info: https://u2fp.org/get-educated/curecast/episode-101.html
Today we are celebrating our 100th episode of U2FP’s CureCast podcast! No guest would be more appropriate for that celebration than Kate Willette. Kate and Mathew started the podcast 6 years ago and she co-hosted the first 34 episodes. Kate also wrote the book “Don’t Call it a Miracle” which is required reading for anyone with a spinal cord injury. Kate was dragged into the world of advocacy when her husband, Bruce, became a quadriplegic in 2001 and she refused to sit idly by. Being an educator and writer by training, she took the bull by the horns and demystified the science of spinal cord injury, giving our community tools for advocacy.More info: https://u2fp.org/get-educated/curecast/episode-100.html
Today we are bringing you part 1 of the “Your Voice Here” series. This collection of interviews was recorded during U2FP’s 2023 Science and Advocacy Symposium in Minneapolis. In this episode, you’ll hear from Physical Therapist, PhD and Researcher, Leanne Rees; Neuroscience student Jason Biundo; and Motivational speaker and Onward Marketing Consultant, Scott Chesney. We cover a variety of topics in this episode, among them: Leanne’s research on the media portrayal of SCI; how Jason’s climbing accident focused his interest in neuroscience to spinal cord injury research translation; and Scott’s wisdom from 38 years of lived experience with an SCI. In the way of topic warning, we do briefly discuss suicidal ideation in our third conversation with Scott, if that is something you would prefer to avoid. I hope you enjoy hearing these conversations as much as I enjoyed being a part of them.More info: https://u2fp.org/get-educated/curecast/episode-99.html
You might be wondering why we are interviewing the founder of the National Breast Cancer Coalition, Fran Visco. Well, it turns out that she is the person primarily responsible for the formation of the Congressionally Directed Medical Research Program (CDMRP) out of the Defense Department. One of their many programs is SCIRP - the Spinal Cord Injury Research Program. Fran was the first peer reviewer for breast cancer after CDMRP was formed. Today's interview conversation was extraordinary for illuminating the parallels and insights between two very different disease conditions. It was so insightful to listen to someone who has been advocating in a different space - breast cancer (Fran is also a survivor of breast cancer) - for some 30 plus years, but who has run up against the same barriers in the research system that we in the SCI space deal with as well. To talk with Fran about the similarities in our work and advocacy efforts was fascinating and fantastic. As many of you know, we in the SCI community always hear the money refrain: that what we really need is “more money, more money, more money.” Well, cancer receives a lot more money than spinal cord injury, obviously. But what’s fascinating, and what our conversation shows, is that...More info: https://u2fp.org/get-educated/curecast/episode-98.html
Today we are talking with Jordan Squair and Mark Anderson about their September 2023 paper published in the journal Science: “Recovery of walking after paralysis by regenerating characterized neurons to their natural target region”. The work is akin to the first gardeners figuring out how to make plants grow. But instead of plants, it's injured neurons. Squair and Anderson are both highly accomplished scientists who also happen to be best friends. They work together with Gregoire Courtine’s group and NeuroRestore at the...More info: https://u2fp.org/get-educated/curecast/episode-97.html
Today we’re talking with Dr. Kajana Satkunendrarajah. Kajana is an associate professor and researcher at the Medical College of Wisconsin. She is also an ally of our legislative efforts in Wisconsin to pass an SCI Research Grant bill there. We discuss Dr. Satkunendrarajah’s NIH R01 grant submission to study her lab's recent discovery of cervical level neurons connected to respiratory function. This leads us into a conversation about the process of grant submissions and the uncertainty and waiting game that all academic researchers must play. We also talk about Kajana’s broad SCI research interests, the tools she employs in her research, her current study examining the relationship between music and neuronal response, and much more!More info here: https://u2fp.org/get-educated/curecast/episode-96.html
Today's conversation features my co-host Jason Stoffer, our new development director, Quinn Brett, and their filmmaker and adventure buddy Robbie Prechtl. Last year, Jason and Quinn completed a rim to rim trip of the Grand Canyon on handcycles(!). They were accompanied by Rob and a team of friends who came along for the adventure and assistance. In case you don’t know, doing a rim to rim journey through the Grand Canyon means descending down to the basin of the canyon and then coming back up on the other side – a descent of 4,500 vertical feet from the south rim to the Colorado river, and then an ascent of 6,000 vertical feet to the north rim. It’s over 20 miles of narrow trails that were never intended for the adaptive trikes they were using. There are three parts to this conversation: first, the physical trip itself - what led to it and how harrowing was it? Second, we explore the notion of identity, pre- and post-injury. As extreme athletes and lovers of the outdoors, how do they adapt their SCI reality to continue to push boundaries? And lastly, how does all this relate to U2FP’s mission: this crazy, audacious, adventurous goal to cure paralysis? We believe this goal requires the SCI community’s direct involvement. Sometimes that seems like an adventure. Sometimes it seems like a crazy impossible canyon to traverse, and that comes up a little bit towards the end of the conversation as well. More info here:https://u2fp.org/get-educated/curecast/episode-95.html
Every year, U2FP puts on an annual science and advocacy symposium. It's a two day event where we bring together people from the SCI community, researchers, clinicians, industry representatives, and funders in an effort to educate our community about the science of curative therapies. We also hope it provides them with a better understanding of the scientific enterprise. But it’s also a conference to educate folks in the scientific community by hearing directly from individuals who live with a spinal cord injury. The overarching questions are: What are we each thinking about this whole enterprise? What are our perceptions and blind spots? And what are we hoping it will deliver to us in terms of restorative therapies. Finally, and most importantly, how can we – the SCI community - engage more effectively in advocating for restored function? Today's podcast is brief. It's a collection of micro-interviews that we conducted during our 2023 Science & Advocacy Symposium here in Minneapolis. During this two day event our podcast producer Julie and my co-host Jason set up a podcast booth and interviewed whoever wanted to come and talk about the symposium, talk about themselves, and talk about their position relative to the big picture. We called it Your Voice Here. Some are scientists, some are people who represent organizations, some are from companies, and most are folks with a SCI. I hope it gives you a little flavor of our symposium and what everyone was thinking about. More info: https://u2fp.org/get-educated/curecast/episode-94.html
Today we are speaking with Dimitry Sayenko. Dimitry is an MD, PhD and an associate professor in Neuromodulation and Nuerosurgery at Houston Methodist Hospital, in Houston, Texas. Our conversation starts off with an exploration of Dimitry’s fascinating beginnings, studying muscle atrophy and bone density in the context of aerospace in both Russia and the U.S. We also talk about his current work studying transcutaneous electrical stimulation and end with a lively exchange of when new discoveries should be implemented in the population. It’s a great conversation that addresses the balance between a researcher’s drive for mechanism and safeguards against the burning desire of the community for functional recovery and risk assessment. More info: https://u2fp.org/get-educated/curecast/episode-92.html
Today’s conversation is a highly anticipated one. For years we’ve been hearing about the groundbreaking work of Jerry Silver to render the injury scar permeable to axon growth. That work led to development of the pharmacologic NVG-291 and the associated company NervGen Pharma. The research has finally advanced to a human SCI clinical trial, led by Monica Perez, PT, PhD, who's today's guest. Dr. Perez is the scientific chair of the Arm and Hands Lab at Shirley Ryan AbilityLab and a Professor of Physical Medicine and Rehabilitation at Northwestern University in Chicago. In this conversation we talk about what led Monica into SCI research, her role as Principal Investigator in this clinical trial, the background and study design of the trial and its current recruitment of participants.More info: https://u2fp.org/get-educated/curecast/episode-92.html
Today we’re talking with Ceren Yarar-Fisher, PhD, PT. Dr. Yarar-Fisher is Vice Chair of Research of Physical Medicine and Rehabilitation in the Dept. of Neuroscience at The Ohio State University. She’s also the director of clinical research at the Belford Center for Spinal Cord Injury. In this episode, we start off exploring the unique origins of Ceren’s interest in science and later spinal cord injury. We also talk about her research interest in SCI functional recovery through rehabilitation and nutrition, her role at the multi-disciplinary Belford Center and this year’s inaugural SCI Days at OSU. Ceren’s passion for her work and the creativity that fosters her research questions are evident throughout this discussion.More info here: https://u2fp.org/get-educated/curecast/episode-91.html
Our guest today is Meghan Moynihan. Megan is the executive director of the Institute for Functional Restoration, or IFR, a not-for-profit organization based at Case Western Reserve University in Cleveland, Ohio. The IFR seeks to further functional recovery in spinal cord injury by developing commercial strategies to get that research to market. We discuss Megan's background as a researcher and her unique perspective based on 17 years with the Food and Drug Administration along with her current work as executive director of the IFR. It is an illuminating discussion on the so-called valleys of death that any therapy must survive to make it to the clinic.More info here: https://u2fp.org/get-educated/curecast/episode-90.html
Our conversation today is with David McMillan, an assistant professor at the University of Miami Leonard M. Miller School of Medicine, Department of Neurological Surgery, and Director of Education and Outreach for The Miami Project to Cure Paralysis. Jason and Julie recorded this interview with David onsite at this year's Science and Advocacy Symposium in Minneapolis, where we had a booth set up. The conversation is more casual than our usual ones and is completely unscripted. David was walking by and Jason pulled him in to chat about his connection to spinal cord injury, the work that he does at the Miami Project and his thoughts on this year’s symposium.
Today’s episode is a bit different. We’re turning the mic towards our own work here at U2FP to let you in on what’s cooking. Jason and Matthew begin by discussing some unique developments with our Team U2FP racers involving extreme heat, adaptive trikes, and a trek along the rim of the Grand Canyon(!). We also discuss U2FP’s upcoming symposium, including how we designed the spinal stim panel, our focus on approaches that combine more than one curative avenue (eg stimulation + stem cells, etc) along with a special CureCast live feature that’s happening. Finally, we talk about U2FP’s growth trajectory and a new position opening up at the organization.
Today we are talking with Yi-Kai Lo and Katie Velez of the SCI research and tech company, Aneuvo. Anuevo has been busy working with investors, the FDA, and multiple research sites to clinically deploy the ExaStim, a novel transcutaneous stimulation device. The goal of their current ASPIRE study is to improve upper limb function. We discuss Dr. Lo’s background in tech and how he was inspired to put that training to use in the field of spinal cord injury. We learn about his drive to pursue challenging projects and his decision to start a business, driven by a passion to bring real functional improvements to the injured population. We’re also joined by Katie Velez, who speaks about her role at Aneuvo to market their device and grow the company. She brings a lot of depth to this conversation, owing to her previous experience working with large tech companies. There’s also some great exchanges around the problems, opportunities and motivations that are reflected by the size of a company. It’s an insightful and in-depth discussion.
The topic of today’s conversation is the Vagus nerve. In Latin, Vagus means wandering or straying, which this conversation does a fair bit of due to the interesting subject matter. Our guide on this path is Dr. Patrick Ganzer of the Miami Project to Cure Paralysis. Dr. Ganzer gives us a great overview of the vagus nerve including its possible evolutionary benefits, early explorations and its unique attributes. More importantly, Dr. Ganzer explains how the vagus nerve can be stimulated to open a window of neuro-plasticity and improve functional outcomes in spinal cord injury. We also talk about his research in phase 1 clinical trials and what is on the horizon.More info here: https://u2fp.org/get-educated/curecast/episode-86.html
Today's guest is Dr. Kim Anderson, a friend and a very influential researcher who we have a really great conversation with. We begin with the story of her spinal cord injury along with her early studies and research, and that leads into one of the things she’s known for: her work on patient preference as a result of directly surveying the spinal cord injury community. Finally, we explore how this trajectory in her work influenced the research community going forward. I think you're going to enjoy this conversation. We sure did.More info: https://u2fp.org/get-educated/curecast/episode-85.html
Today, our guest is Louise Phipps Senft. Louise is the mother to a son with an SCI, and founder of Blink of an Eye, a nonprofit organization that is committed to addressing that initial moment when everything changes after a spinal cord injury. A big theme of this conversation is trauma. And one of the things that arises in our dialogue with Louise is how this emotional trauma kind of goes under or undiagnosed – both with the injured person AND with the family and the extended community. Louise is an extraordinary person who will tell us a bit about the story of her family and how they've responded in the aftermath of her son’s SCI. We’ll also talk about her son and where he is now. You can find more information about Blink of an Eye at blinkofaneye.org.
More info here: https://u2fp.org/get-educated/curecast/episode-84.html
What you are about to hear is one of the richest conversations we’ve ever had on the show. Our guests today are Gabriel Rodreick (Matthew’s son) and Julie Censullo (CureCast producer) who are here to discuss an audio-art project they created together called “Life Begins in the Stillness” - which we play at the top of the episode. We then dive into their relationship with spinal cord injury, with each other, with art and with the creative process.
This conversation goes deep into the ripple effects of SCI beyond the injured individual; how it slams headlong into our families and friends; and how Gabe’s injury propelled Matthew to join the work of cure advocacy and the pros and cons of that decision. You’ll also hear one of the best discussions I’ve heard on the topic of inspiration and what is meant by “inspiration porn” in the SCI community.
As we open with Julie and Gabe’s 7 minute work, Life Begins in the Stillness, I suggest you find a place where you can be still. Then close your eyes and pay attention to how the sounds and thoughts interact with your body and being.
More info here: u2fp.org/get-educated/curecast/episode-83.html
CureCast co-host Jason Stoffer was injured 5 and ½ years ago. Earlier this year, his friend Lewis Johnson sustained a spinal cord injury. The similarities are uncanny: they were both in the same career field; they both went to the same inpatient hospital; and they both attended the same inpatient rehab facility.
For Jason, the big question on the table is this: What has changed in 5 years? What progress are we making? Are newly injured folks getting the same message I got from my clinicians?
We asked today’s guests to give us some high level answers to those questions. Dr. Shekar Kurpad is Professor and Chair of Neurosurgery at the Medical College of Wisconsin and Candy Tefertiller is the Executive Director of Research and Evaluation at Craig Hospital in Denver.
More info here: u2fp.org/get-educated/curecast/episode-82.html
What if we could take all the neural trash that forms in the spinal cord after an injury, the stuff that hinders connectivity, and turn it into treasure? This is the idea behind cellular reprogramming. Today's podcast guest, Dr. Arshak Alexanian, is a biochemist and the Chief Scientific Officer at the Wisconsin biotech firm, Cell Reprogramming & Therapuetics, LLC. We met Dr. Alexanian not too long ago while advocating for our $3M SCI Research Grant bill in the Wisconsin legislature. Dr. Alexanian believes so strongly in the possibility of cellular reprogramming that he took the leap out of academia and into private business to help make it happen.
Today's guest on the podcast is Kim Eisner, the executive director of the Craig H. Neilsen Foundation. This year happens to be the Neilsen Foundation’s 20th anniversary. For those who are unfamiliar with the Foundation, its namesake Craig H. Neilsen, was an entrepreneur who sustained a spinal cord injury in 1985 and formed the foundation in 2002. This was an attempt to catalyze research and support for people living with a spinal cord injury. In the last 20 years, The Neilsen Foundation has contributed almost $360,000,000 to both research and nonprofit organizations serving people with spinal cord injuries. Given this milestone, we wanted to talk with Kym Eisner about the foundation’s work, hear some of the history of the foundation and learn what’s going on right now.
More info here: https://u2fp.org/get-educated/curecast/episode-80.html
Have you ever wondered what it feels like to participate in an SCI clinical research trial? How do you find out about these trials? How do you find out about these trials? Does anyone make a recovery? What are some reasons that you might take the leap - or not?
On today’s podcast, you’ll get some answers to these questions and many more. Our guests, Mandy Mackenzie and Laura Grabowski, have each participated in a number of clinical trials and we’ve put them in the hot seat to give you an idea what it’s like.
More info here: u2fp.org/get-educated/curecast/episode-79.html
Today’s episode is a rebroadcast of our conversation with Grégoire Courtine from two years ago. Dr. Courtine has been pivotal in the successful application of epidural stimulation in humans with SCI, in both his research and device commercialization. In this episode, we talk about Dr. Courtine’s motivation to study spinal cord injury and epidural stimulation in particular. We discuss the translation of his early rodent model research into humans and the mechanism of the therapy, such as targeted modulated stimulation coupled with intention and the reorganization of spared neural tissue. We also discuss the device’s application and it’s outcomes in different severities of injury, as well as his hopes for future application.More info here: u2fp.org/get-educated/curecast/episode-78.html
Today our guest is Dan Hellenbrand, a renaissance man of sorts. Dan sustained a cervical injury (C5-6) as a carpenter back in 2003 and ended up going back to school to become a SCI researcher, as well as an advocate for curative therapies. We have an interesting conversation about early physical therapy, the role of belief and competition with yourself and how that aids recovery. We also discuss Dan’s research and interest in mitigating early damage at the injury site, acute versus chronic injury strategies, the Wisconsin bill to fund SCI research, and what sustains advocacy passion in the long run.More info here: https://u2fp.org/get-educated/curecast/episode-77.html
Today's conversation is a rebroadcast of our interview with Samuel Stupp back in 2022. We thought it was a good time to revisit this conversation, given Dr. Stupp’s most recent publication, which you can learn more about below in the summary review done by U2FP’s science writer, Sam Maddox. More info and research links here: https://u2fp.org/get-educated/curecast/episode-76.htmlAs always, please share your thoughts with us via email at curecast@u2fp.org. Thanks for listening!
Today’s episode revisits important elements and loose ends of spinal cord stimulation (SCS) that didn’t fit neatly into the arc of our first three conversations on this topic. We’re calling this installment the ‘Junk Drawer’ - not because we consider these loose ends to be junk, but because they represent the multi-directional potential of stimulation’s promise that are on the horizon. This includes strategies we haven't fully broached such as combination therapies and clinical trials that are in the works - including one that U2FP helped design and coordinated funding for - as well as well as other strategies such as deep brain stimulation and intra-spinal stimulation.As always, please share your thoughts with us via email at curecast@u2fp.org. Thanks for listening! BioSam 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.
Today we talk with Bill Murphy, a bioengineer out of the University of Wisconsin Madison. We recently met Dr. Murphy when he came to the Wisconsin Capitol in support of our $3M SCI Research Grant bill back in January. Bill’s team has been working on developing biomaterials to improve the body’s ability to receive and utilize Chondroitinase ABC (ChABC). ChABC is an enzyme that holds lots of promise for jump starting axon regeneration, a key element for repairing the damaged spinal cord. But ChABC is notoriously unstable, having a short shelf life once it’s formulated as well as degrading quickly after it enters the body.Jason and Matthew talk with Dr. Murphy about the specifics of his research strategy to improve the use of ChABC, and how it could be used in combination with other therapeutic interventions. We also discuss his support of our bill and his reflection on what it was like to walk through and meet legislators with us as we advocated for our bill to fund SCI research in Wisconsin.As always, please share your thoughts with us via email at curecast@u2fp.org. Thanks for listening!Guest BioBill Murphy is the Harvey D. Spangler Professor of Biomedical Engineering and Professor of Orthopedics & Rehabilitation at the University of Wisconsin. His research group has developed new classes of biomimetic materials inspired by nature. They have used their materials to create new medical devices, human cells, and human tissues. He has over 200 publications, filed over 60 patents and co-founded 4 start-up companies based on those inventions. He also serves as Founding Director of the Forward BIO Institute, which catalyzes innovation in research, entrepreneurship and training, and pushes groundbreaking technologies out of academia and into the private sector.More info and resources: https://u2fp.org/get-educated/curecast/episode-74.html
This is the third and final (for now) installment of our 101 tour of spinal stimulation. We're joined again by Sam Maddox, U2FP's Scientific Advisory Board Director and veteran science journalist. Today, we discuss the commercialization of spinal stim, detailing the path that these therapies will need to traverse to arrive at the market. We talk about how labs and businesses are organized and review some of the challenges they face, including obtaining FDA approval, getting funded, and organizing clinical trials and recruiting participants. Even after those hurdles are cleared and a therapy is ready to go to market, we speculate about the role clinical buy-in will play. Finally, a quick shout out to you, our listeners for engaging with us during this series. We’ve had a lot of feedback and intend to address many of your questions and comments on the air soon. You can still reach out and tell us what you think at curecast@u2fp.org.For more resources, including guest bios, related scientific studies and past conversations we've had with researchers studying spinal stimulation, go here: https://u2fp.org/get-educated/curecast/episode-73.html
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 curecast@u2fp.org.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 BioBefore 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 BioJessica 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%20winckelGuest BioAnn 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: marathon@u2fp.org.
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 stimulation? 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 curecast@u2fp.org
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.
We are dedicating this podcast episode to Franklin Elieh, co-founder of NorCalSCI (https://norcalsci.org/news/2022/franklin). Franklin died this past month after living for decades with an SCI. He embodied the critical characteristics of empathy, systems thinking and deep connection to the community that all successful advocates share. He also lived his life on the continuum of Care and Cure. His death is a reminder of much work we have ahead of us to improve Care and deliver Cures.
Quinn and Jason talk about their experiences with SCI, meeting at Craig hospital, and their realization that the word “cure” is not embraced by everyone in our community. This podcast is an expansion on the conversation they had at our Science and Advocacy Symposium in 2021.
Revisit Franklin Elieh’s Advocacy Spotlight interview as well as the abbreviated version of Quinn and Jason’s Symposium discussion on our Video Library page here: https://u2fp.org/get-educated/annual-symposium/video-library/2021-presentations-1.html
Bios Quinn Brett grew up in New Hope, Minnesota. After graduating with a degree in Psychology and Leadership from the University of Minnesota she bee-lined to Estes Park, Colorado where she had visited as a youth and found her first outdoor industry job at the YMCA of the Rockies. Athletics and movement have always been a big part of Quinn's life, from running the Twin Cities Marathon, triathlons, ultra-runs and rock climbing. In 2008, Quinn returned to school to obtain a Masters Degree in Educational Psychology as well as a social studies secondary teaching certificate. Traveling and the mountain lifestyle led her away from teaching in a classroom setting, and instead she acquired her Emergency Medicine training and Search and Rescue Training. She got hired as a climbing ranger in RMNP in the summer months, educating visitors on Public Land use and rescuing visitors with everything from twisted ankles to life-threatening injuries in precarious places. In the winter months she taught Wilderness EMT courses and traveled on various climbing expeditions. Quinn has established new routes and speed records on mountains across the globe, as well as all over the American West. In 2017, Quinn took a large climbing fall on El Capitan in Yosemite National Park, sustaining a T11 ASIA A Spinal Cord Injury. Her love to move through outdoor wilderness space continues as does her passion for educating others on spinal cord injury and research.
Jason Stoffer lives in the Rockies of Northwest Montana with his wife and three children. He has a B.S. degree in Natural Sciences/Biology from the University of Alaska, Anchorage. Jason's love of outdoor adventure led him to work and play there as a mountaineer, long distance hiker, wild-land firefighter, search and rescue technician, EMT, and Law Enforcement Officer. A single vehicle rollover on his commute to work one morning resulted in an L1 Spinal Cord Injury (SCI) and paraplegia. He has now turned his energies toward SCI cure advocacy and participates as a manager for the Cure Advocacy Network as well as continuing to host the CureCast podcast with Matthew.
Bumper music: Careful by Freaque (SCI musician)
Jason and Matthew talk with Samantha Troyer, an SCI peer mentor in Wisconsin who joined up with U2FP’s Cure Advocacy Network (CAN) to become a legislative advocate there. Sam is joined by our CAN Manager, Jake Beckstrom. We talk about the current effort to pass an SCI research funding Bill in Wisconsin, its attendant ups and downs, unique challenges, the perseverance required for this work, and the power of our shared SCI story.
We wanted to give you an inside look at our advocacy efforts, in a state where we have a bill in play right now. This work to pass SCI funding at the state level is difficult and satisfying, as you’ll hear. These SCI research funding bills are especially unique in that they require our community’s voice at the table where funding decisions are made. And right now, we need your voice more than ever in Wisconsin. Consider writing a letter of support for our bill, or showing up in person at the Wisconsin capital to testify (more info here: https://u2fp.org/get-educated/our-voice.html/article/2022/03/17/can-i-get-a-witness-). Let’s help our advocates in Wisconsin get this thing done.
Samantha Troyer is a grateful to have survived a deadly car accident 15 years ago, even though she came back a quadriplegic. After her spinal cord injury (C1/2) and rehab at the Froedtert Medical College of Wisconsin, Sam decided to become an SCI peer mentor there. Sam wanted to help share the strength she learned from surviving trauma on to others who have suffered an SCI. This work as an SCI peer mentor motivated Sam to find more ways to advocate for a better future for members of the SCI Community - which is why she joined U2FP’s Wisconsin CAN in their push to pass an SCI research funding bill there. Working to improve the quality of life for herself and others with an SCI maximizes her gratitude for life and minimizes the pain I endure daily. Sam knows that some people view a quadriplegic brimming with gratitude as ‘weird’, but that’s ok. Heck, she thinks it’s awesome she’s sometimes seen as weird. Sam believes she was born weird and that she is doing what she was meant to do.
IG @midcoast_shutterbug
Jake Beckstrom is from Watertown, Minnesota. At the age of 16, Jake had a diving accident in a backyard pool and sustained a C4-6 spinal cord injury. A lifelong love of hunting, fishing, and the outdoors led him to pursue a path of environmental sustainability. He received a B.S. in Environmental Science at Southwest Minnesota State University, and in 2015, he received a law degree and master's degree in Environmental Law and Policy at Vermont Law School. Jake is eager to use his experience in public policy and advocacy to work with the Cure Advocacy Network to lobby for smarter spinal cord injury research funding and find a cure for paralysis.
Jason and Matthew speak with Samuel Stupp, a Professor of Materials Science, Chemistry, Medicine, and Biomedical Engineering at Northwestern University. You may remember reading about Dr. Stupp late last year when news about his ‘dancing molecules’ used in a preclinical model of acute spinal cord injury circulated widely. We discuss Dr. Stupp’s discoveries, his commitment to researching and delivering a therapeutic for SCI and this area of study typically outside of the SCI world.
Samuel Stupp is Board of Trustees Professor of Materials Science and Engineering, Chemistry, Medicine, and Biomedical Engineering at Northwestern University. He also directs Northwestern’s Simpson Querrey Institute for BioNanotechnology and the Center for Bio-Inspired Energy Science, an Energy Frontiers Research Center funded by the U.S. Department of Energy. Stupp’s interdisciplinary research is focused on developing self-assembling supramolecular nanostructures and materials for functions relevant to renewable energy, regenerative medicine, and robotic soft matter. He is a member of the National Academy of Sciences, the National Academy of Engineering, the American Academy of Arts and Sciences, the Royal Spanish Academy, and the National Academy of Inventors. His awards include the Department of Energy Prize for Outstanding Achievement in Materials Chemistry, the Materials Research Society Medal Award, the International Award from The Society of Polymer Science in Japan, the Royal Society Award in Soft Matter and Biophysical Chemistry, and three national awards from the American Chemical Society: the ACS Award in Polymer Chemistry, the Ronald Breslow Award for Achievement in Biomimetic Chemistry, and the Ralph F. Hirschmann Award in Peptide Chemistry.
Feedback: curecast@u2fp.org Bumper Music: Patience by Freaque (SCI musician)
Jason and Matthew talk with Michael Lane (Researcher at Drexel College of Medicine) and Jake Chalfin (SCI advocate and chair of the PA Spinal Cord Advisory Research Council,) as we continue with part 2 of our series on the experience of SCI community consultants in research labs. This discussion continues our exploration around the exciting and unique nature of this relationship and its impact on the research process.
If you missed part 1 with Murray Blackmore and Nancy Nicholas, you can find it here (https://u2fp.org/get-educated/curecast/episode-58.html).
U2FP is actively working to match community members with scientists while supporting both parties to ensure that these relationships grow into effective partnerships. Sign up here (https://forms.gle/aPeSii7PXKu7x6qDA) and we’ll contact you soon.
Any questions, comments, feedback, suggestions? Email us at curecast@u2fp.org
Bumper music, Patience by Freaque (Minneapolis-based musician with a SCI)
Jason and Matthew interview Dr. Murray Blackmore (Marquette University) and Nancy Nichols (person with lived experience of SCI) about Nancy’s addition to the Blackmore Lab as a consultant. We talk about the relationship that developed, the impact it's had on the Blackmore Lab, and the impact relationships like this could have on the wider research landscape.
If you are a scientist or a member of the SCI community who is interested in exploring this kind of relationship, please contact us or fill out our interest form (https://forms.gle/agrP14RSUsDVxBgu8). We are facilitating and supporting these relationships in order to ensure they are effective and productive.
Guest Bios
Murray Blackmore, PhD, received his undergraduate degree from Stanford University, and his graduate degree in neuroscience from the University of Minnesota. During his postdoctoral training at the Miami Project to Cure Paralysis, Dr. Blackmore studied axon regeneration and adopted High Content Screening methods to identify new gene targets to promote neural repair. Later, as a Research Assistant Professor at the Miami Project, Dr. Blackmore used a gene therapy approach to test these new gene targets for the ability to promote axon regeneration in the injured spinal cord. Dr. Blackmore is continuing this line of research at Marquette University, using viral delivery of genes to injured neurons in rodent models of spinal injury in order to foster repair.
Nancy Nicholas, MBA, received her Bachelor's of Science in Chemical Engineering from Rensselaer Polytechnic Institute in Troy, New York. She later earned a Master’s in Business Administration from Seattle University. Nancy is a retired executive from the Boeing company, where she held a variety of positions starting in manufacturing research and development and culminating in program management. She sustained a spinal cord injury while mountain biking with her family in 2013. Nancy serves as the SCI Community Liaison to the Blackmore lab at Marquette University, where she shares her lived experience and represents the SCI community in the research process.
Listen on: Spotify, Apple Podcasts Like this episode? Donate to U2FP Email us at: curecast@u2fp.org Bumper Music: Careful by Freaque (SCI musician)
Jason and Matthew interview Dr. Barry Komisaruk, Neurophysiologist from the Psychology Department at Rutgers University. Barry has been researching sexuality for over 50 years and is maybe best known for the seminal work: The Science of Orgasm. We talk about the history of his research and discoveries, the historical challenges around sexual function research and ideas for how to further this area of research to benefit folks with SCI.
Pay particular attention to the latter half of the podcast if you’re interested in participating in a study idea that we landed on collectively. If it piques your interest, send us a message at curecast@u2fp.org and we’ll connect you.
Barry R. Komisaruk received a B.S. in biology at The City University of New York and Ph.D. in psychobiology from Rutgers University. He was a National Institute of Mental Health postdoctoral fellow in neuroendocrinology at the Brain Research Institute, University of California at Los Angeles. Joining the Rutgers-Newark faculty in 1966, Komisaruk was a professor in the Institute of Animal Behavior and Department of Zoology. He is now Distinguished Professor in the Psychology Department, director of the Minority Biomedical Research Support Program, and former associate dean of the Graduate School. With a penchant for finding new research avenues to explore, Komisaruk received a Board of Trustees of Rutgers University Excellence in Research award and the Hugo G. Beigel Research Award of the Society for the Scientific Study of Sexuality. His major research interests include: functional neuroimaging of genital sensory response; neurophysiology, neuropharmacology and neuroendocrinology of reproductive behavior; and neural control of autonomic genital function. He is senior author of The Science of Orgasm, a comprehensive look at the biology and neuroscience of orgasm, published by The Johns Hopkins University Press, as well as The Orgasm Answer Guide, a general readership book from the same publisher. He has published more than 155 academic journal articles and chapters.
Jason and Matthew talk with Megan Detloff (SCI researcher at Drexel College of Medicine) and Bethany Kondiles (SCI researcher at ICORD). They talk about the evolution of the International Online SCI Research Seminar (IOSCIRS) in response to the pandemic and as a forum for SCI researchers to stay abreast of one another's work. But they have also begun to discuss the value of the seminar for the lay audience of people living with SCI. We talk through this development and both the challenges and opportunities to use this platform as a way to connect researchers and people living with SCI.
Let us know what you think. Send comments or questions to curecast@u2fp.org
Music: Dig A Hole by SCI artist, Freaque
International Online SCI Research Seminar: https://www.ioscirs.com/ Twitter: https://twitter.com/ioscirs?lang=en FB: https://www.facebook.com/iOSCIRS/
Bios: Bethany Kondiles Bethany is a postdoctoral research fellow working under Dr. Wolfram Tetzlaff at the International Collaboration on Repair Discoveries in Vancouver, BC. Her research focuses on myelin, aging, spinal cord injury, traumatic brain injury, and neuroprotective interventions. She has served on the steering committee of the International Online Spinal Cord Injury Research Seminars (IOSCIRS) since April 2020, and has chaired the Diversity Equity and Inclusion sub-committee since June of 2020. When she's not in the lab, she tries to get out climbing and skiing as much as possible in the beautiful BC mountains. Twitter: @beearekay
Megan Detloff Dr. Megan Detloff received her B.S. in chemical engineering from the University of Michigan and her Ph.D. in neuroscience from the Ohio State University in the lab of Dr. Michele Basso. She came to Drexel University College of Medicine for a postdoctoral fellowship in the laboratory of Dr. John Houlé and is currently an Assistant Professor in the Department of Neurobiology and Anatomy and the Marion Murray Spinal Cord Research Center. Her research focuses on understanding how rehabilitative exercise can modulate both inflammation and a subtype of neurons called nociceptors that contribute to chronic pain development after spinal cord injury. Together with colleagues from the University of Kentucky and the spinal cord injury research field, Megan has been a founding contributor to the International Online Spinal Cord Research Seminars or I-OSCIRS, a YouTube channel that broadcasts live research seminars given by faculty and trainees from across the globe.
Jason and Matthew have a conversation in response to the last two conversations on sex after SCI. They talk about where the conversation seemed to be going and after some reflection, where it ought to go. Listen in and don’t forget to check out the information about this year’s Annual Science and Advocacy Symposium in Salt Lake City at u2fp.org AND, send a message to curecast@u2fp.org for comments, suggestions and questions.
Bumper music: House Song by SCI artist Freaque, findable on Spotify
Jason and Matthew continue the conversation from episode 52 with SCI community members, Quinn Brett, Kelsey Peterson and Thomas Cloyd. They discuss each guest’s experience with sex after injury, where they got their information and what they’ve learned and continue to learn.
This conversation starts to set the stage for our upcoming episodes with SCI researchers focused on sexual function for pleasure.
Once again, this is a frank conversation with language and themes to match. We’d love to get your feedback; email us at curecast@u2fp.org
Music: Marriage In A Graveyard by Freaque
Episode 52 begins our series on Sex, sex and SCI and the research into restoring sexual function.
Matthew and Jason start by talking with Kelsey Peterson, Quinn Brett, and Thomas Cloyd about their experiences with sex after injury: their partners, perceptions, feelings and explorations. This is a frank and explicit conversation, so be prepared.
We plan to continue the conversation with multiple interviews and guests. So please send us your comments and questions in order to steer our discussion in the most relevant direction.
Music: In The Dark by Freaque (SCI artist Gabriel Rodreick)
Thomas Cloyd is a healthcare business guy, fitness enthusiast, and advocate for the SCI community. He was born and raised in MN and following a c5 SCI in 2012, helped co-found GUSU, a SCI research non-profit, and graduated with an MBA from the University of Minnesota. He now lives independently in Oakland, CA working full-time and navigating all the ups and downs of adulthood with the added spice of quadriplegia. Thomas wouldn’t be where he is today without help from others, and he is committed to paying that help forward in any way he can.
Kelsey Peterson is a dancer, writer, filmmaker and quadriplegic. Her previous path was interrupted when she sustained a spinal cord injury in 2012 and became paralyzed from the chest down. Despite her injury, Kelsey continues to dance, now from a wheelchair. She currently serves as co-director, choreographer and dancer on a live music and dance production featuring inter-abled artists called, A Cripple’s Dance. Her choreographic background lends to her storytelling, which she also leans on in her documentary film, Move Me. Artistic advocacy for people with disabilities is her passion, using storytelling as a means of education, visibility and empathy.
Quinn Brett's passion for wilderness and adventure has taken her to the nooks and crannies of the world, reveling in the freedom of movement. Her accomplishments are varied; first ascents, speed ascents, summit handstands, public lands advocacy, National Park technical rescuer, educator and yoga-climbing retreat owner. In October 2017 she took a 100-foot fall climbing in Yosemite, causing paralysis below the waist, T12. Her drive to cover long distances over technically complex terrain continues, just a few layers deeper. Quinn still advocates for public lands and now spinal cord research through writing, speaking and as an athlete.
Jimmy Anderson is a state representative in the Wisconsin general Assembly who also lives with an SCI. Jason and Matthew talk with Jimmy about his education, injury and how they led him into politics.
They also discuss the effort Jimmy is championing to create a $3 million Wisconsin SCI research program. This push for smart SCI research funding is modeled after similar legislation U2FP’s Cure Advocacy Network has helped pass in other states. Jimmy gives an update on the current status of this proposed funding, where the initiative is headed and how to support it so that it becomes the law.
Click here to find out how you can help. Then follow U2FP on Facebook, Instagram and Twitter and subscribe to our newsletter to stay abreast of our work.
Bio: Jimmy Anderson is serving his third term as the state representative for the 47th Assembly District in Wisconsin. As a legislator, he has focused on issues dealing with healthcare, the environment, and science and technology. In his free time, he enjoys reading, board games and going to the movies.
Jimmy Anderson State Representative 47th Assembly District 9 North – Wisconsin Capitol 608-266-8570
Website: https://legis.wisconsin.gov/assembly/47/anderson Facebook: https://www.facebook.com/RepJimmyAnderson/ Twitter: https://twitter.com/Rep_Jimmy
Music: Dig A Hole by Freaque
Jason and Matthew talk with U2FP's Scientific Advisory Board Director, Sam Maddox about U2FP’s new Headline Patrol and how to read the news about SCI research.
Headlines and media coverage of research can often be misleading. Sam talks about his years following and covering the research. He provides a number of suggestions for what to look for, what terms are critical to understand in order to have a better grasp of what the announcement really means for those of us in the SCI community.
You can check out Sam’s compendium to this episode at https://u2fp.org/get-educated/curecast.html. Use it to sift news stories that come across your feed.
-- 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. Email Sam at sammaddox@u2fp.org.
As always, we’d love to hear from you. You can email us at curecast@u2fp.org
Thanks for listening!
Jason and Matthew speak with Dr. Melissa Miller and Jacqueline Roche from the Congressionally Directed Medical Research Program’s SCIRP (Spinal Cord Injury Research Program).
SCIRP is a $40 million per year funding program for SCI that is of specific interest because they include people with SCI in the scientific review process. We talk about the program, its funding strategies and most importantly...how much they want to hear from you!
So check out the various links below and reach out to them: - Unsolicited Feedback Form link: https://cdmrp.army.mil/about/CDMRP_Feedback_Form.pdf - SCIRP webpage: https://cdmrp.army.mil/scirp/default - CDMRP Award Search: https://cdmrp.army.mil/search.aspx - Latest Web Highlight Example: https://cdmrp.army.mil/scirp/research_highlights/21track-sci_highlight - SCIRP Program book can be found here: https://cdmrp.army.mil/scirp/pbks/scirppbk2019b.pdf - CDMRP Public Affairs Email: usarmy.detrick.medcom-cdmrp.mbx.cdmrp-public-affairs@mail.mil
Social Media - Twitter: @cdmrp
Contact - Email: jacqueline.roche@gdit.com
Melissa R. Miller, PhD Program Manager, Spinal Cord Injury Research Program, Congressionally Directed Medical Research Programs Dr. Miller currently serves as the Program Manager for the Spinal Cord Injury Research Program, Congressionally Directed Medical Research Programs, U.S. Army Medical Research and Development Command.
Jacqueline Roche, MS: Jacqueline serves as the Consumer Reviewer Administrator (CRA) from General Dynamics for the Spinal Cord Injury Research Program, Congressionally Directed Medical Research Programs, U.S. Army Medical Research and Development Command. As a CRA, she coordinates consumer reviewer involvement. Consumer reviewers act as lay experts on their disease, injury, or condition, bringing their experience and perspectives to the evaluation of research grant proposals.
Watch for an upcoming series of podcasts on sexual function research as well as perspectives from the community. We’ve been wanting to do this for a while….as you’ll hear towards the end of this podcast.
Bumper Music: “Dig A Hole” by Freaque If you are a musician with SCI and would like to feature your music as a bumper (intro and outro) on the podcast send an email to curecast@u2fp.org
Jason and Matthew talk with Dr. Richard Toselli, the President, CEO and CMO at Invivo Therapeutics. Invivo has developed and is trialing its Neuro Spinal Scaffold for the treatment of Spinal Cord Injury in the acute setting. We talk with Dr. Toselli about its development, current testing and potential future uses and applications.
Dr. Richard Toselli (M.D., M.B.A.), serves as InVivo’s President, Chief Executive Officer and Chief Medical Officer, as well as a Director. A board-certified neurological surgeon, Dr. Toselli is passionate about redefining treatment for spinal cord injury and improving on a standard of care that has remained unchanged throughout his 30-year career in spine both in academic practice and industry. Prior to joining InVivo, he served as Chief Medical Officer for Cochlear Limited. In that role, he was responsible for global clinical, regulatory and medical affairs teams. Previously, Dr. Toselli served five years at Sanofi in various leadership roles, including Vice President of Global Medical Affairs – Immunology and Inflammation, Biologics Division; Vice President of Global Medical Affairs and Head of the Biosurgery Discovery Performance Unit; and Vice President of Global Medical Affairs, Biosurgery. Before Sanofi, he served as Chief Medical/Technology Officer for Covidien Surgical, and earlier held various roles at DePuy Spine including Director of Medical Affairs, Worldwide Vice President of Research and Development and Worldwide Vice President of Clinical Evidence and External Relations. He subsequently held the position of Vice President of Evidence-Based Medicine at Johnson & Johnson for the device sector. Additionally, Dr. Toselli has a depth of experience in academia. His previous academic positions include Assistant Professor at Brown University, Associate Professor, Director of Spine Center, Associate Chief of Staff at the University of North Carolina (UNC) and Associate Professor at the University of Vermont. Dr. Toselli holds a B.A. from Providence College, his M.D. from Brown University and an MBA from the UNC’s Kenan-Flagler Business School.
Bumper music “Dig A Hole” by SCI artist, Freaque.
Jason and Matthew speak with Leon Ford about his advocacy and activism in Pittsburgh and across the United States. The conversation weaves in and through the wisdom that Leon has earned through tragedy, pain and self reflection...and its relationship to our work of protest and partnership.
Leon Ford, a native of Pittsburgh Pennsylvania born on March 16, 1993, has accomplished so much in such a short period of time. The well-known author, International speaker, and 2019 City Council candidate for Pittsburgh, PA District 9 has devoted his life to the betterment of his community. Leon Ford is a well-respected activist, mental health ambassador and social advocate of change through his leadership. Ford’s influence in his community has divulged a heroic display of strength, wisdom, faith, and fortitude.
His knowledge of social disparities and injustice comes from personal experience. When Leon was 19 years old his life drastically changed. November 11, 2012, he was unjustly shot five times by the Pittsburgh Police during a racially charged traffic stop. This horrific case of mistaken identity has left him physically paralyzed and confined to a wheelchair, but Ford hasn’t allowed his circumstances to deter him from having a positive impact on his community.
Through mentorship, he has sparked a movement cultivating leaders, organizers and social entrepreneurs by empowering them to use their voices, platforms, and resources to evoke change and reshape their communities for generations to come. His mentorship endeavors have transcended into Universities. Ford’s latest partnership with Duquense University bridges the gap between the community, students, professors and community leaders through a program known as “The Voices Project”. This program provides an open space to discuss literacy, social reform, gentrification, police brutality, and several other social disparities.
While Ford is passionate about educating the community he has also devoted time to work with police officers to help provide clarity on cultural competency. His work also includes working with PA legislators to draft policies that modify the use of force laws, which will intern increase chances to receive justice during officer involved shootings. Ford continues to display true leadership through his work while also being a source of healing, hope, and inspiration.
Leon’s Fords work has not gone unnoticed in the community, he has received several awards including but not limited to; President Obama’s Volunteer Service Award “2017, The Root 100 “2018” Pittsburgh’s 40 Under 40 “2019”
Despite hardships, he continues to be a voice for the voiceless and a leader to those in need of direction.
Social Media Follow Leon Ford on Instagram: @leonfordspeaks
On the Web - Leon Ford's Website: linktr.ee/leonfordspeaks - What It’s Like to Survive Being Shot by the Police: www.theatlantic.com/video/archive/2020/05/leon-ford/611671/ - Surviving a Police Shooting turned a Teenager into an Activist: https://www.theverge.com/2020/8/31/21396054/leon-ford-shooting-pittsburgh-activist-journey-police-brutality
Jason and Matthew interview professional climber and passionate spinal cord injury advocate, Quinn Brett. We talk with Quinn about her career as a climber, the 100 foot fall from the face of El Capitan in Yosemite National Park that dropped her into our SCI community, and how she’s navigating the ascents of advocacy. Let us know what you think of the conversation by emailing us at curecast@u2fp.org. Enjoy.
Born in Minnesota, Quinn Brett somehow was drawn to mountain running and climbing. Her passion for wilderness and adventure took her to nooks and crannies of the world, reveling in the freedom of movement Her accomplishments are varied; first ascents, speed ascents, summit handstands, public lands advocacy, National Park technical rescuer, educator and yoga-climbing retreat owner. October 2017 she took a 100 foot fall climbing in Yosemite causing paralysis below the waist, T12. Her drive to cover long distances over technically complex terrain continues, just a few layers deeper. Quinn still advocates for public lands and now spinal cord research through writing, speaking and as an athlete. Social Media: Follow Quinn on Instagram @quinndalina
Online Stories: - https://www.outsideonline.com/2416479/adaptive-yoga-routine-quinn-brett - https://eu.patagonia.com/ch/de/stories/letting-go/story-71788.html
In episode 45 Jason and Matthew speak with long time activists and twins, Jason and David Carmel. David was injured over two decades ago while vacationing in Mexico. He has gone on to achieve a successful career in biotech. Jason is a PhD / MD researcher at Columbia University researching activity based therapies and electrical stimulation.
Their unique connection as twins weaves in and through the conversation for a unique perspective on their journey, work and activism after SCI.
-- David A. Carmel Mr. Carmel is the senior vice president of public affairs and communications of eGenesis and is responsible for external outreach efforts to advocacy organizations, professional societies, policy makers, and investors. Prior to joining eGenesis, Mr. Carmel served as vice president in medical affairs and strategic alliances at Atara Biotherapeutics, where he helped to advance tab-cel® (tabelecleucel), which is in Phase 3 development for post-transplant lymphoproliferative disease (PTLD), an aggressive cancer that affects patients who have received a solid organ or bone marrow transplant. Earlier, he was co-founder and principal of Carmel Asset Management, an investment partnership where he was responsible for life science investments. Previously, he held positions in public affairs and business development for StemCyte, Pfizer, and Johnson & Johnson. Mr. Carmel served as the White House Fellow for the Secretary of the Treasury from 2002 to 2003.
Mr. Carmel was appointed by Governor Andrew Cuomo to the New York Life Science Advisory Board. He is a founding board member of the New York Stem Cell Foundation, a former member of the New York State Spinal Cord Injury Research Board, and a Henry Crown Fellow of the Aspen Institute. He worked on the California Stem Cell Research and Cures Initiative, which provided $3 billion to fund stem cell research. He earned a bachelor’s degree, magna cum laude, from Harvard College and an MBA with a certificate in health care from the Stanford Graduate School of Business.
Jason B. Carmel, M.D., Ph.D. -Weinberg Family Associate Professor of Neurology (in Orthopedics) -Executive Director, Weinberg Family Cerebral Palsy Center -Director, Movement Recovery Laboratory -Columbia University Vagelos College of Physicians and Surgeons -Columbia Translational Neuroscience Initiative Scholar
Dr. Carmel received his B.A. in Human Biology from Stanford University and his MD from Columbia University’s College of Physicians and Surgeons. While in medical school, his identical twin brother suffered a spinal cord injury. This lead him to pursue basic science research. He completed a PhD with Wise Young, MD, PhD at Rutgers University. He then finished his medical training in Child Neurology at Columbia and is Board certified in this area. He completed a postdoctoral fellowship with Jack Martin, PhD, in neural control of movement.
Dr. Carmel’s laboratory work at Columbia University Irving Medical Center is focused on the recovery of movement after injury to the central nervous system. The laboratory focuses on how the brain and spinal cord partner for movement through their motor and sensory connections. The laboratory is dedicated to repairing brain-spinal cord connections using activity-based therapies, including electrical stimulation and motor training. The approach capitalizes on the fact that most brain and spinal injuries preserve some of these connections. Spared connections become more numerous and stronger when activity is applied. This approach has shown promise in rat models of cerebral palsy, stroke, and spinal cord injury.
Dr. Carmel sees patients with cerebral palsy and other neurological conditions affecting movement. The target neurological impairments include hemiplegia and spastic diplegia. Combining laboratory science and clinical medicine, he seeks to restore function through repair of the nervous system.
Jason and Matthew interview Dr. Gregoire Courtine, the Chief Science Officer of GTX Medical and Professor at the Swiss Federal Institute of Technology. Dr. Courtine has been researching spinal cord stimulation for over 20 years and is hoping to bring that research to clinical relevance with emerging clinical trials with GTX’s LIFT (non-invasive electrical spinal cord stimulation) and GO2 (targeted epidural spinal stimulation).
We will continue the conversation in an upcoming Part 2 with Dr. Courtine about the research, the development of GTX and both the possibilities and limitations for functional recovery now and in the future.
Grégoire Courtine was originally trained in Mathematics and Physics, but received his PhD degree in Experimental Medicine from the University of Pavia, Italy, and the INSERM Plasticity and Motricity, in France, in 2003. From 2004-2007, he held a Postdoctoral Fellow position at the Brain Research Institute, University of California at Los Angeles (UCLA) under the supervision of Dr. Reggie Edgerton, and was a research associate for the Christopher and Dana Reeve Foundation (CDRF). In 2008, he became Assistant Professor at the faculty of Medicine of the University of Zurich where he established his own research laboratory. In 2012, he was nominated Associate Professor at the Swiss Federal Institute of Technology Lausanne (EPFL) where he holds the International paraplegic foundation (IRP) chair in spinal cord repair at the Center for Neuroprosthetics and the Brain Mind Institute. He published several articles proposing radically new approaches for restoring function after spinal cord injury, which were discussed in national and international press extensively. He received numerous honors and awards such as the 2007 UCLA Chancellor's award for excellence in post-doctoral research and the 2009 Schellenberg Prize for his innovative research in spinal cord injury awarded by the International Foundation of Research in Paraplegia.
https://www.gtxmedical.com/ https://people.epfl.ch/gregoire.courtine/?lang=en
Jason and Matthew have a conversation with Bob Yant, 39 years into a spinal cord injury and longtime advocate for spinal cord injury research. Bob founded Cure Medical, a catheter company based in California that donates 10% of its net income to medical research. He is also the founder and president of Axonis Therapeutics, a company committed to delivering a therapeutic for the treatment of SCI.
BIO: Following a 1981 accident from which Bob became a quadriplegic, Bob has dedicated himself to raising funds for basic research aimed at developing a cure for spinal cord injury. From 1982 to 2011 Bob was a member of the national board of directors of the group now known as the Christopher and Dana Reeve Foundation (until May 1999 known as the American Paralysis Association), a national, not-for-profit organization whose goal is to develop the earliest possible cure for paralysis caused by spinal cord injury. Since he began raising money for spinal cord regeneration research, Bob has raised over $17 million. In 1989 Bob founded Research Medical, a medical supply company, which donated 10% of pre-tax profits to medical research. Research Medical also had a strong interest in hiring people who use wheelchairs, with wheelchair users comprising approximately 50% of the 50 employees in 1996, when the company was sold. Bob has been a founder or board member of 14 different charities. He served on the board of directors of the SEED (Self Employment for the Entrepeneuring Disabled) Institute, a not-for-profit group that seeks to train disabled persons to become business entrepreneurs. Bob co-founded the Newport Elementary School Foundation and the Ensign Fund. For six years Bob was the Vice President of the Newport Harbor Educational Foundation. Bob was a member of the board of directors for the Life Rolls On Foundation, which has a nationwide organization to take disabled people surfing. Bob has been very involved in his neighborhood association, serving as Treasurer, Vice President and as President. In 2007 Bob co-founded the Community Foundation of Balboa Peninsula Point. In 2008 Bob founded Cure Medical, a medical supply manufacturing company that donates 10% of net profits to spinal cord regeneration research. The success of the company has allowed significant donations to be made to spinal cord regeneration research. Bob attended the University of California at Santa Barbara and received a Bachelor of Arts degree from UC Berkeley. He lives in Newport Beach, California.
On the Web: - https://axonis.us/ - https://curemedical.com/about-us/meet-bob-yant/
Jason and Matthew interview Dr. Ethan Perlstein, formerly the Chief Science Officer at the Christopher and Dana Reeve Foundation and Founder of Perlara. We talk about Ethan’s work to develop a ‘roadmap to cures for paralysis’, along with his experience, reception and impressions for where the cure movement can and should go next.
BIO: Over the course of the last decade, first as a graduate student at Harvard University in the Department of Molecular and Cell Biology with PhD advisor Professor Stuart Schreiber and then as an independent postdoctoral fellow at the Lewis-Sigler Institute at Princeton University, Dr. Ethan Perlstein developed an approach to studying old drugs and discovering new drugs in model organisms called evolutionary pharmacology. Ethan is an author on 19 peer-reviewed scholarly publications, including the discovery of a novel mechanism of action for the antidepressant Zoloft based on studies in yeast cells. He founded Perlara in 2014, a biotech committed to accelerating the discovery of cures for rare genetic diseases and uncover underlying mechanisms that enable the development of treatments that work across a range of diseases and individuals. Ethan was hired as the Chief Science Officer at the Christopher and Dana Reeve Foundation in 2019 and left the organization in April of this year.
Social Media: Follow Ethan Perlstein on Twitter @eperlste
In the News: - Scenes from the Postdocalypse: https://www.motherjones.com/environment/2014/03/inquiring-minds-ethan-perlstein-postdocalypse/ - Scientist's Experiment in Fundraising: https://www.wsj.com/articles/no-headline-available-1391555781
Jason and Matthew interview Dr. Susan Harkema, from the University of Louisville. We discuss her long standing research using the strategy of neuromodulation, neuroplasticity and locomotor training to discover and understand the potential for functional recovery after Spinal Cord Injury.
For more information about Dr. Harkema and the full complement of her work and research activities, click here: https://louisville.edu/kscirc/basic-research/faculty-1/susan-harkema
Jason and Matthew interview Drs. Kelly and Roy Cho to discuss COVID-19, their practical understanding of the virus, developing treatment practices and how that intersects with folks who have impairments as a result of disability in general and SCI specifically.
Here are some online resources they provided for more information: - http://www.academyscipro.org/covid-19-resources-for-sci-professionals/ - https://www.aacpdm.org/UserFiles/file/covid-19-disability-briefing.pdf
Dr. Kelly Cho is a practicing physical medicine and rehabilitation physician at Gillette Children’s Hospital in St. Paul, Minnesota.
Dr. Roy Cho is an interventional pulmonologist at the University of Minnesota.
"What is the goal here? What are we trying to do?...and to me it still is and has always been to basically restore near normal function to people that have chronic spinal cord injury…that’s what I wanna talk about….what I’ve learned is that I have to start with that. And I have to start with the following sentence, which is: I believe that’s possible and what I wanna do is to be a part of making that happen.”
This is an excerpt from Jason and Matthew’s interview with Dr. Murray Blackmore from Marquette University in Milwaukee Wisconsin. Dr. Blackmore’s research is immersed in identifying candidate genes toward nerve regeneration for Spinal Cord Injury.
We discuss how spinal cord injury invited itself into Murray’s family from a devastating car accident in his early teens where his mother suffered a C5 injury. And how this led to Murray’s work and passionate efforts to discover a meaningful path to curing paralysis.
After Murray provides a primer on genetics as a starting point to explain the complex methodologies applied in his lab to test gene candidates we have a bit of a sidebar conversation regarding the intersection of research and passion and follow that with some of Murray's 'pie in the sky' ideas for creating change in the larger research process. Check it out!
Bio: Dr. Blackmore received his undergraduate degree from Stanford University, and his graduate degree in neuroscience from the University of Minnesota. During his postdoctoral training at the Miami Project to Cure Paralysis, Dr. Blackmore studied axon regeneration and adopted High Content Screening methods to identify new gene targets to promote neural repair. Later, as a Research Assistant Professor at the Miami Project, Dr. Blackmore used a gene therapy approach to test these new gene targets for the ability to promote axon regeneration in the injured spinal cord. Dr. Blackmore is continuing this line of research at Marquette University, using viral delivery of genes to injured neurons in rodent models of spinal injury in order to foster repair.
Jason and Matthew interview Dr. Harold Punnett (co-founder and member of the Board of Directors) and Paul Brennan (President and CEO) from NervGen Pharma. They discuss how Dr. Punnett’s daughter-in-law’s Spinal Cord Injury led to the connection with Dr. Jerry Silver (click the link to hear more about the science from episode 19 with Dr. Jerry Silver) and eventually the founding of the company, their proprietary NVG291 (also known as intracellular sigma peptide or ISP) and their hopes for its use in treating SCI and other CNS disorders.
Dr. Harold Punnett: Dr. Punnett, co-founder of NervGen, is an accomplished angel investor who has been the director of multiple start-up companies. As a dental surgeon with a practice in British Columbia, Canada, he has extensive knowledge of medicine and physiology, including cell biology. Along with this knowledge, he has a deep passion for those suffering from spinal cord injury and other nerve-related challenges. Dr. Punnett is a Member of the College of Dental Surgeons of British Columbia, Member of the British Columbia Dental Association and Member of the Canadian Dental Association. He received his doctorate degree from the University of British Columbia.
Paul Brennan: Paul Brennan has over 30 years of experience in the pharmaceutical and biotech industries working in leadership roles in general management, corporate strategy, commercial planning, business development and regulatory affairs in Canada, Sweden, the United Kingdom, and the United States. Most recently Mr. Brennan’s experiences include senior business development and management positions in various biotech companies, including Aquinox Pharmaceuticals, Arbutus Biopharma, Aspreva Pharmaceuticals, and AnorMED Inc. Mr. Brennan has a comprehensive list of business development and licensing transactions, totalling over $3 billion in value: he played key roles in the merger of Tekmira Pharmaceuticals and OnCore BioPharma to create Arbutus Biopharma, in the sale of Aspreva Pharmaceuticals to Vifor Pharma for $915 million and in the sale of AnorMED to Genzyme for $580 million. Prior to working in biotech Mr. Brennan held senior roles in Business Development and Regulatory Affairs at AstraZeneca. Mr. Brennan holds a MSc in Physiology, and a BSc (Hons) in Life Sciences from Queen’s University in Kingston, Ontario
Jason and Matthew interview Dr. Sasha Rabchevsky from the University of Kentucky and Dr. Michael Lane from the Drexel College of Medicine. They are both Spinal Cord Injury researchers, and if interested in the specifics of their research you can find earlier podcast interviews with them here. In this interview we talk about how the COVID-19 shutdown has affected the research effort and how researchers and institutions are adapting. We then explore some ideas about what we might see or anticipate on the other end of the shutdown.
Matthew talks with Kelsey Peterson, the woman behind the documentary film SUBMERGED - formerly titled “The Cure Map”. Matthew and Kelsey talk about her pathway to advocacy and the genesis of the Cure Map project, the recent announcement of being the recipient of the highly competitive ITVS Open Call award, the effects of the COVID-19 troubles and lots more.
Follow Kelsey on social media here: https://www.facebook.com/submergeddocumentaryfilm/ https://www.instagram.com/submergedfilm/ https://www.youtube.com/channel/UC0uh96WZU_X46JIWSCqM6bw
Jason and Matthew interview Conquer Paralysis Now founder, Sam Schmidt. We discuss Sam’s history as a race car driver, his injury, the genesis for the foundation and his recent project Driven, an Activity Based Fitness center in Las Vegas Nevada.
Please reach out to us at curecast@u2fp.org
In Epsiode 34 of U2FP's CureCast podcast, we introduce Jason Stoffer. We talk with Jason about who he is, where he hails from and how he came to be the new co-host on the podcast. We also talk with Kate Willette, author of Don’t Call It a Miracle: The Movement To Cure Spinal Cord Injury, about her new projects. It's an intimate and wide-ranging conversation that we think you’ll enjoy. You can email us at curecast@u2fp.org We’d love to hear from you, and you can find out more about us at u2fp.org
Check out Episode 33 of CureCast. We (Kate Willette, Jason Stoffer and Matthew Rodreick) talk with Dr. Mohamad Bydon from the Mayo Clinic. You may have seen the Good Morning America piece focused on 'super responder' patient one in the Phase 1 Clinical Trial using Adipose Derived Mesenchymal Stem Cells. We wanted to understand more about the study, how to go beyond the media hype and get an understanding of where Dr. Bydon sees this research going. Take a listen and drop us a note at curecast@u2fp.org.
Kate, Matthew and Jason Stoffer (our new podcast host) have a conversation with Dr. Stephen Strittmatter, The Vincent Coates Professor of Neurology and Professor of Neuroscience at Yale School of Medicine. His discoveries over the last two decades of research led to the founding of ReNetX, who are applying that technology to discover if neurons can regrow in the chronic injury (in humans) by eliminating inhibitory growth factors.
We discuss the pre-clinical research, the mechanistic activity and the challenges of translating a discovery to clinical relevance.
Here are a few links to give you some background: Background and clinical trial info: https://www.renetx.com/technology.html Publications: https://www.renetx.com/publications.html Recent blog post from our Scientific Advisory Board Director, Sam Maddox: https://u2fp.org/get-educated/our-voice.html/article/2019/10/29/clinical-trial-enrolling-chronic-sci-renetx
Let us know what you think at curecast@u2fp.org If you want to help us feed the movement we need to cure paralysis from SCI you can donate to u2fp here.
Thanks for listening.
Matthew and Kate talk with Kathy Allen and Sandra Mulder, the first two participants in the EStand Trial in Minnesota. Kathy and Sandra (as well as Jered Chinook who participated in the Mayo Clinic’s Epidural Stimulation study) were invited to attend the American Spinal Injury Association Conference in April to share their personal experiences as part of a conversation facilitated by U2FP’s Executive Director, Matthew Rodreick. We thought it would be helpful to hear from them directly on the podcast.
We talk about their early experiences in the trial, where they are now, and what they continue to experience. It’s a nice follow up to the Epsiode #30 interview with Dr. David Darrow, the principal investigator of the EStand trial. If you haven’t listened to that one, check it out to fill in all the information.
We talk with David about the EStand Trial using Epidural Stimulation for spinal cord injury, the trial design, progress, next steps, and its connection the Cure Advocacy Network. The informal title of this episode is ‘The Transformation of Suffering’, which is David’s eloquent and personal description of why he’s doing what he does and what he is hoping to accomplish with the trial and treatment of SCI.
Matthew and Kate have a conversation with Dr. Lyn Jakeman, Director in the Division of Neuroscience at the National Institutes of Health. We spoke with Lyn a week ahead of NIH's SCI 2020: A Decade of Disruption. We discuss what led to the conference, why now and what they hope to accomplish from it.
We also talk about why they chose the title, 'Decade of Disruption', and how that informed the planning process. As to the 'disruption' reference, we also discuss endparalysis foundation's open letter to Dr. Jakeman, and hear a surprising and somewhat encouraging answer. Take a listen and let us know what you think at curecast@u2fp.org.
Matthew and Kate talk with Dr. David Magnuson (University of Louisville) and Dr. Karim Fouad (University of Alberta) about how discoveries are translated, funded, published....and what are some of the problems inherent to getting science to work for us. Links discussed: SCI 2020: https://meetings.ninds.nih.gov/Home/Index/21041 and check back for links to follow up on Kentucky's SCI research funding. Here are the links to follow up with Kentucky's battle to retain funding for SCI research: to KSCIRC: http://louisville.edu/kscirc/ and to Scobirc: http://scobirc.med.uky.edu and to KSCHIRT: https://chfs.ky.gov/agencies/dph/dpqi/hcab/Pages/kschirb.aspx and to the Michael Brent Resource Center: https://www.spinalcordmedicineresources.com
Matthew and Kate interview Dr. Dennis Bourbeau from the Cleveland FES Center (http://fescenter.org/about-fes-center/who-we-are/investigators/dennis-bourbeau-phd/) about his strategies and collaborations to restore bladder function using stimulation. We discuss a number of studies he's involved in as preparation for his presentation at Working 2 Walk Science and Advocacy Symposium...and hope to open up the conversation to all there re: Bowel, Bladder, Sexual Function.
A stimulating conversation with Dr. Andrei Krossioukov from the University of British Columbia and Icord. Kate and Matthew talk with him about spinal stimulation to seek recovery of autonomic functions for chronic spinal cord injury: bowel, bladder, seal function, blood pressure regulation.
Dr. Karim Fouad is a Professor of Rehabilitation Medicine at the University of Alberta and Canada Research Chair for Spinal Cord Injury. Kate and Matthew talk with Karim about how he ended up in this field and the more recent research that he has been involved with: the discovery of pericytes and their role in inhibiting blood flow after injury and what might be done about that; the potential for inciting a controlled inflammatory response to open a window for recovery after injury; and Karim's ideas for improving the translation of science to clinical relevance. Check it Out. As always, please write to us with your questions, suggestions and critiques at curecast@u2fp.org
Check out this great discussion Kate and Matthew have with Dr. Nicholas Jeffery from Texas A & M. We talked with Dr. Jeffery about the recent clinical trial for paralyzed dogs using chondroitinase along with his future work. After you listen to our interview, go take a look at his presentation from Working 2 Walk 2015.
If we’re working from a 17th century model of publishing science, then what effect does that have on translating science to clinical relevance? Kate and I had a mind expanding conversation (for laypeople) around this idea with Dr. Adam Ferguson, Professor and Principal Investigator at the Brain and Spinal Injury Center at UCSF. You may have already seen his fascinating presentation at Working 2 Walk this past year, “Big Data Analytics: Bringing Dark Data to Light for Enhancing Discovery and Translation in Spinal Cord Injury“. We tried to unpack some of the ideas and possibilities that came from that presentation.
Kate and Matthew interview New Mobility magazine’s Senior Editor Ian Ruder. We discuss his role, the history of the publication and how SCI research fits into the story.
Kate and Matthew interview longtime SCI writer, blogger, journalist and advocate Sam Maddox. Sam was a correspondent for Time, Money and People magazine and a former journalism professor at the University of Colorado – Boulder. His latest project is a publication called, First 90 Days to assist people in getting the best information at the time of injury.
In this conversation, Matthew and Kate talk with Donna Sullivan, U2FP’s Special Projects Director and Chris Powell, U2FP’s Research Consultant. We discuss their entry into SCI advocacy, what they do at U2FP and the planning for this year’s Working 2 Walk Science and Advocacy Symposium in Miami.
A conversation with Doctor’s Kendall Lee, Kristin Zhao and Igor Lavrov from the Mayo Clinic in Rochester, MN. They give Kate and Matthew an update on the current Epidural Stimulation replication study, as well as their plans to further develop the strategy.
Kate and Matthew talk with Australian advocate Perry Cross. We talk about his injury, his foundation: Perry Cross Spinal Research Foundation (http://www.pcsrf.org.au/) and some of the issues around stem cell tourism.
Kate and Matthew talk with Lee Thibeault about the process of participating in clinical trials. Lee was one of the first individuals from the SCI community to participate in the early clinical trials of Stem Cell Inc. He talks candidly about his experience, its effects and the importance of participating in clinical trials to further the science to cure paralysis.
Cure Advocacy Network Pennsylvania with Leon Ford and Kate Chalfin (Episode 6) by Matthew Rodreick & Jason Stoffer
Kate and Matthew talk about the history of the Miami Project to Cure Paralysis, the Schwann Cell human clinical trial and the upcoming Working 2 Walk Symposium in Miami.
A discussion about the Epidural Stimulation Replication Study at the Mayo Clinic with Dr.'s Kendall Lee, Kristine Zhao and Igo Lavrov
In this episode of CureCast, we talk with Dr. Jerry Silver from Case Western Reserve University in Ohio. It’s a great conversation about his long-standing work to promote regeneration after spinal cord injury. He’s had some exciting recent results which we talk about and which you can also see in his presentation at Working 2 Walk.check out the latest SCI CureCast with Dr. Jerry Silver from Case Western Reserve University in Ohio. It’s a great conversation about his long-standing work to promote regeneration after spinal cord injury. He’s had some exciting recent results which we talk about in some depth.
Kate, Matthew & Marilyn explore the world of Oligodendrocytes and then talk about recent news and rumors about the ongoing Asterias Biotherapeutics trial.
In this episode, Kate and Matthew as the seemingly simple question that takes on complex meaning for many different members of the SCI Community. To the cure advocates at U2FP, what does the word mean? What can people with SCI reasonably push for in cure advocacy? Check it out and then drop us a note at curecast@u2fp.org.
Marilyn, Kate and Matthew discuss the complicated research processes targeting the replacement and incorporation of neurons into the injured spinal cord. How do these replacement strategies fit into an already wired and connected system? And how can they be coaxed to graft into the existing system and actually work? Join the conversation with your comments by emailing us at curecast@u2fp.org
We have a great conversation with Kelsey Peterson and Maddie Brown - creators of the documentary-in-progress: The Cure Map. This is a must-listen for those in the community still trying to figure out how to contribute to our movement. After our interview with them, Kate Willette told me: "that was my favorite interview we've done so far!" You won't want to miss it.
Matthew and Kate talk with Tiffiny, who has been writing and blogging about spinal cord injury for many years, and has just launched a new podcast (True Wheelchair Life: SCI Life Uncovered). The conversation centers around how she developed her career as a writer and advocate, her new podcast, and how she views changes within the SCI community as it relates to the Cure Movement.
You can find Tiffiny lots of places on the web, including her blog, Beauty Ability, the knowledge-base site Spinalpedia, along with her podcast - True Wheelchair Life: SCI Life Uncovered. As always, please drop us a note at curecast@u2fp.org for comments, questions and suggestion.
Dr. Alexandar Sasha Rabchevsky is a Professor of Physiology and a Research Scientist in the Spinal Cord and Brain Injury Research Center at the University of Kentucky School of Medicine. Sasha also lives with paralysis from a spinal cord injury.
Check out the latest SCI CureCast interview with Dr. David Magnuson from the The University of Louisville’s Kentucky Spinal Cord Injury Research Center. Kate and I talk with him about his research, specifically about the Central Pattern Generator and its provocative implications for recovery potential, rehab, exercise and more. David is willing to answer any questions our listeners may have…so, here’s his email address: david.magnuson@louisville.edu And as always, please drop us a note at curecast@u2fp.org for comments, questions and suggestions.