U2FP CureCast

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: [email protected] 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 [email protected] 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: [email protected] Bumper Music: Careful by Freaque (SCI musician)

Coming soon ...

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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] Music: Marriage In A Graveyard by Freaque