U2FP CureCast

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