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.
CureCast Episode 50: Sam Maddox and The Headline Patrol
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 email@example.com.
As always, we’d love to hear from you. You can email us at firstname.lastname@example.org
Thanks for listening!
Melissa Miller and Jacqueline Roche - CureCast Episode 49
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: email@example.com
- Twitter: @cdmrp
- Email: firstname.lastname@example.org
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 email@example.com
CureCast Epsiode 48: Dr. Richard Toselli - Invivo Therapeutics
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.
CureCast Episode 47: Leon Ford
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.
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
CureCast Episode 46: Quinn Brett
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 firstname.lastname@example.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.
Follow Quinn on Instagram @quinndalina
CureCast Episode 45: David Carmel and Dr. Jason Carmel
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 repa
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!
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.
Great discussion and diverse perspectives
Excellent cast on all aspects of spinal cord injury life, research, treatment and beyond. Great potential too!