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.
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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.

Badgering Wisconsin for a Cure Epsiode 61

Matthew and Jason talk with Ann Van de Winckel, a researcher and physical therapist at the University of Minnesota, Medical School, who is doing fascinating work to help restore body awareness below the level of injury - yes, you read that right - using cognitive multisensory rehabilitation (CMR). Dr. Van de Winckel’s work is showing reductions in neuropathic pain, sensation and motor recovery with people who’ve suffered from spinal cord injury. This discussion spans Ann’s unique blending of Eastern and Western medical strategies, how her current research is developing, and the opportunities for combining CMR with other interventions to gain functional recovery for those with SCI.

- Watch Dr. Van de Winckel’s presentation on neuropathic pain relief from our 2021 Symposium here: https://u2fp.org/get-educated/annual-symposium/video-library/2021-presentations-2.html
- Find more information on her research and check on upcoming research trials here: med.umn.edu/bio/physical-rehab-main/ann-van%20de%20winckel

Guest Bio
Ann Van de Winckel is Assistant Professor in the Division of Physical Therapy and in the Division of Rehabilitation Science, Department of Rehabilitation Medicine, Medical School, University of Minnesota. She is the Director of the Brain Body Mind Laboratory. Her research focus is to investigate brain mechanisms of how mind and body approaches may work to improve daily life of people with chronic conditions and chronic pain. She has 22 years of experience in body awareness-related brain imaging research and research about the mechanisms of Cognitive Multisensory Rehabilitation, which is a physical therapy approach that focuses on recalibrating body awareness in adults with neurological conditions and/or with chronic pain. More recently, her research has been geared towards implementing body awareness-related interventions in clinical trials and in brain research in adults with low back pain, in adults with spinal cord injury and in adults with spinal cord injury-related neuropathic pain.

The Mind-Body Connection (Episode 68)

Jason and Matthew interview Jim Harris, a wilderness photographer who was injured in 2014. Jim was recently featured in Outside Magazine regarding his experience with psilocybin and its connection to some restored mobility. This conversation is a follow-up to our previous podcast with Dr. Jessica Nielson on the potential use of psilocybin after SCI. However, in this episode, we specifically focus on one of our community member's direct experience with exploring the use of psychedelics and his advocacy to decriminalize their use in Colorado.  

Guest Bio
Before sustaining a spine injury at the end of 2014, Jim Harris made his living from hard days in the mountains. Following six years of teaching wilderness mountaineering courses, Jim began shooting photos, video, and writing for clients like National Geographic, Camp 4 Collective, Powder Magazine, and outdoor brands. His work reflects a deep firsthand expertise of wilderness travel and DIY adventure. Since being paralyzed, Jim has pushed towards a remarkable recovery and is finding fresh opportunities to be involved in adventure storytelling.

More Resources
- Jim Harris' Website: https://perpetualweekend.com/
- Check out this survey on psychedelics and spasticity from the Miami Project: https://umiami.qualtrics.com/jfe/form/SV_2lf8kbdV7ogHxjg

Psilocybin & SCI: Thinking Outside the Box (Episode 70)

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! 

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.

Junk Drawer: Spinal Stimulation (Episode 75)

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.

Junk Drawer: Spinal Stimulation (Episode 75)

U2FP CureCast

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