61 episodes

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.

U2FP CureCast Matthew Rodreick & Jason Stoffer

    • Education
    • 5.0 • 5 Ratings

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.

    The Doctor Will See You Now (Episode 63)

    The Doctor Will See You Now (Episode 63)

    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.

    • 1 hr 20 min
    The Care-Cure Divide? (Episode 62)

    The Care-Cure Divide? (Episode 62)

    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)

    • 45 min
    Badgering Wisconsin for a Cure Epsiode 61

    Badgering Wisconsin for a Cure Epsiode 61

    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.

    • 1 hr 16 min
    CureCast Episode 60 Samuel Stupp

    CureCast Episode 60 Samuel Stupp

    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)

    • 1 hr 4 min
    Lab Rats (Part 2)

    Lab Rats (Part 2)

    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)

    • 1 hr 20 min
    Lab Rats (Part 1)

    Lab Rats (Part 1)

    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)

    • 1 hr 2 min

Customer Reviews

5.0 out of 5
5 Ratings

5 Ratings

Brad sci ,

Someone with SCI

This podcast is great. I appreciate the effort to continue the movement to cure paralysis. Unfortunately I feel as though a lot of the community/ medical field has given up on trying to find a cure and excepting things as they happen. We all deal with things in different ways, but anyone living with SCI knows how difficult life can be living with this. Never give up! I appreciate the the genuine spirits of the people that do this podcast along with all the medical professionals who work hard at trying to find a cure. Thank you!

borowiczd ,

An sci viewers perspective

Jason depiction of an individual with SCI viewing life being content was spot on for me. Thanks for sharing keep spreading love and knowledge.

jburda1 ,

Great discussion and diverse perspectives

Excellent cast on all aspects of spinal cord injury life, research, treatment and beyond. Great potential too!

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