“They elevated themselves by their own self-education on these things. And then it became very clear that you weren’t going to mess with these people, because they knew exactly what you were talking about – and they knew exactly what they were talking about.”
- Dr. Anthony Fauci, NIAID Director (from the film “How to Survive a Plague”, 2012, directed by David France)
Where to Listen
In our latest CureCast interview, Jason Stoffer and Matthew Rodreick 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 a successful career in biotech. Jason is a PhD / MD researcher at Columbia University who researches activity based therapies and electrical stimulation.
Their unique connection as twins weaves in and through our 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 repair of the nervous system.
Jason and Matthew interview Dr. Gregoire Courtine, the Chief Science Officer of GTX Medical and Professor at the Swiss Federal Institute of Technology. Dr. Courtine has been researching spinal cord stimulation for over 20 years and is hoping to bring that research to clinical relevance with emerging clinical trials with GTX’s LIFT (non-invasive electrical spinal cord stimulation) and GO2 (targeted epidural spinal stimulation).
We will continue the conversation in an upcoming Part 2 with Dr. Courtine about the research, the development of GTX and both the possibilities and limitations for functional recovery now and in the future.
Grégoire Courtine was originally trained in Mathematics and Physics, but received his PhD degree in Experimental Medicine from the University of Pavia, Italy, and the INSERM Plasticity and Motricity, in France, in 2003. From 2004-2007, he held a Postdoctoral Fellow position at the Brain Research Institute, University of California at Los Angeles (UCLA) under the supervision of Dr. Reggie Edgerton, and was a research associate for the Christopher and Dana Reeve Foundation (CDRF). In 2008, he became Assistant Professor at the faculty of Medicine of the University of Zurich where he established his own research laboratory. In 2012, he was nominated Associate Professor at the Swiss Federal Institute of Technology Lausanne (EPFL) where he holds the International paraplegic foundation (IRP) chair in spinal cord repair at the Center for Neuroprosthetics and the Brain Mind Institute. He published several articles proposing radically new approaches for restoring function after spinal cord injury, which were discussed in national and international press extensively. He received numerous honors and awards such as the 2007 UCLA Chancellors award for excellence in post-doctoral research and the 2009 Schellenberg Prize for his innovative research in spinal cord injury awarded by the International Foundation of Research in Paraplegia.
On the Web:
Jason and Matthew have a conversation with Bob Yant, 39 years into a spinal cord injury and longtime advocate for spinal cord injury research. Bob founded Cure Medical, a catheter company based in California that donates 10% of its net income to medical research. He is also the founder and president of Axonis Therapeutics, a company committed to delivering a therapeutic for the treatment of SCI.
BIO: Following a 1981 accident from which Bob became a quadriplegic, Bob has dedicated himself to raising funds for basic research aimed at developing a cure for spinal cord injury. From 1982 to 2011 Bob was a member of the national board of directors of the group now known as the Christopher and Dana Reeve Foundation (until May 1999 known as the American Paralysis Association), a national, not-for-proﬁt organization whose goal is to develop the earliest possible cure for paralysis caused by spinal cord injury. Since he began raising money for spinal cord regeneration research, Bob has raised over $18 million.
In 1989 Bob founded Research Medical, a medical supply company, which donated 10% of pre-tax proﬁts to medical research. Research Medical also had a strong interest in hiring people who use wheelchairs, with wheelchair users comprising approximately 50% of the 50 employees in 1996, when the company was sold.
Bob has been a founder or board member of 14 different charities. He served on the board of directors of the SEED (Self Employment for the Entrepeneuring Disabled) Institute, a not-for-proﬁt group that seeks to train disabled persons to become business entrepreneurs. Bob co-founded the Newport Elementary School Foundation and the Ensign Fund. For six years Bob was the Vice President of the Newport Harbor Educational Foundation. Bob was a member of the board of directors for the Life Rolls On Foundation, which has a nationwide organization to take disabled people surfing. Bob has been very involved in his neighborhood association, serving as Treasurer, Vice President and as President. In 2007 Bob co-founded the Community Foundation of Balboa Peninsula Point.
In 2008 Bob founded Cure Medical, a medical supply manufacturing company that donates 10% of net profits to spinal cord regeneration research. The success of the company has allowed significant donations to be made to spinal cord regeneration research.
Bob attended the University of California at Santa Barbara and received a Bachelor of Arts degree from UC Berkeley. He lives in Newport Beach, California.
On the Web:
Jason and Matthew interview Dr. Ethan Perlstein, formerly the Chief Science Officer at the Christopher and Dana Reeve Foundation and Founder of Perlara.We talk about Ethan’s work to develop a ‘roadmap to cures for paralysis’, along with his experience, reception and impressions for where the cure movement can and should go next.
Bio: Over the course of the last decade, first as a graduate student at Harvard University in the Department of Molecular and Cell Biology with PhD advisor Professor Stuart Schreiber and then as an independent postdoctoral fellow at the Lewis-Sigler Institute at Princeton University, Dr. Ethan Perlstein developed an approach to studying old drugs and discovering new drugs in model organisms called evolutionary pharmacology. Ethan is an author on 19 peer-reviewed scholarly publications, including the discovery of a novel mechanism of action for the antidepressant Zoloft based on studies in yeast cells.
He founded Perlara in 2014, a biotech committed to accelerating the discovery of cures for rare genetic diseases and uncover underlying mechanisms that enable the development of treatments that work across a range of diseases and individuals. Ethan was hired as the Chief Science Officer at the Christopher and Dana Reeve Foundation in 2019 and left the organization in April of this year.
Social Media: Follow Ethan Perlstein on Twitter @eperlste
In the News:
Jason and Matthew interview Dr. Susan Harkema, from the University of Louisville. We discuss her long standing research using the strategy of neuromodulation, neuroplasticity and locomotor training to discover and understand the potential for functional recovery after Spinal Cord Injury.
For more information about Dr. Harkema and the full complement of her work and research activities, click here.
Jason and Matthew interview Drs. Kelly and Roy Cho to discuss COVID-19, their practical understanding of the virus, developing treatment practices and how that intersects with folks who have impairments as a result of disability in general and SCI specifically.
Here are some online resources they provided for more information:
- Covid-19 Resources for Spinal Cord Injury Professionals
- Disability considerations during the Covid-19 outbreak (World Health Organization)
Dr. Kelly Cho is a practicing physical medicine and rehabilitation physician at Gillette Children’s Hospital in St. Paul, Minnesota. Click here to view her expertise.
Dr. Roy Cho is an interventional pulmonologist at the University of Minnesota. Click here to view his expertise.
"What is the goal here? What are we trying to do?...and to me it still is and has always been to basically restore near normal function to people that have chronic spinal cord injury…that’s what I wanna talk about….what I’ve learned is that I have to start with that. And I have to start with the following sentence, which is: I believe that’s possible and what I wanna do is to be a part of making that happen.”
This is an excerpt from Jason and Matthew’s interview with Dr. Murray Blackmore from Marquette University in Milwaukee Wisconsin. Dr. Blackmore’s research is immersed in identifying candidate genes toward nerve regeneration for Spinal Cord Injury.
We discuss how spinal cord injury invited itself into Murray’s family from a devastating car accident in his early teens where his mother suffered a C5 injury. And how this led to Murray’s work and passionate efforts to discover a meaningful path to curing paralysis.
After Murray provides a primer on genetics as a starting point to explain the complex methodologies applied in his lab to test gene candidates we have a bit of a sidebar conversation regarding the intersection of research and passion and follow that with some of Murray's 'pie in the sky' ideas for creating change in the larger research process. Check it out!
Bio: Dr. Murray Blackmore 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.
Jason and Matthew interview Dr. Harold Punnett (co-founder and member of the Board of Directors) and Paul Brennan (President and CEO) from NervGen Pharma. They discuss how Dr. Punnett’s daughter-in-law’s Spinal Cord Injury led to the connection with Dr. Jerry Silver (click the link to hear more about the science from episode 19 with Dr. Jerry Silver) and eventually the founding of the company, their proprietary NVG291 (also known as intracellular sigma peptide or ISP) and their hopes for its use in treating SCI and other CNS disorders.
Dr. Harold Punnett: Dr. Punnett, co-founder of NervGen, is an accomplished angel investor who has been the director of multiple start-up companies. As a dental surgeon with a practice in British Columbia, Canada, he has extensive knowledge of medicine and physiology, including cell biology. Along with this knowledge, he has a deep passion for those suffering from spinal cord injury and other nerve-related challenges. Dr. Punnett is a Member of the College of Dental Surgeons of British Columbia, Member of the British Columbia Dental Association and Member of the Canadian Dental Association. He received his doctorate degree from the University of British Columbia.
Paul Brennan: Paul Brennan has over 30 years of experience in the pharmaceutical and biotech industries working in leadership roles in general management, corporate strategy, commercial planning, business development and regulatory affairs in Canada, Sweden, the United Kingdom, and the United States. Most recently Mr. Brennan’s experiences include senior business development and management positions in various biotech companies, including Aquinox Pharmaceuticals, Arbutus Biopharma, Aspreva Pharmaceuticals, and AnorMED Inc. Mr. Brennan has a comprehensive list of business development and licensing transactions, totalling over $3 billion in value: he played key roles in the merger of Tekmira Pharmaceuticals and OnCore BioPharma to create Arbutus Biopharma, in the sale of Aspreva Pharmaceuticals to Vifor Pharma for $915 million and in the sale of AnorMED to Genzyme for $580 million. Prior to working in biotech Mr. Brennan held senior roles in Business Development and Regulatory Affairs at AstraZeneca. Mr. Brennan holds a MSc in Physiology, and a BSc (Hons) in Life Sciences from Queen’s University in Kingston, Ontario
Jason and Matthew interview Dr. Sasha Rabchevsky from the University of Kentucky and Dr. Michael Lane from the Drexel College of Medicine. They are both Spinal Cord Injury researchers, and if interested in the specifics of their research you can find earlier podcast interviews with them here. In this interview we talk about how the COVID-19 shutdown has affected the research effort and how researchers and institutions are adapting. We then explore some ideas about what we might see or anticipate on the other end of the shutdown.
You can read the responses about the effects of the shutdown from other researchers in Sam Maddox (U2FP Scientific Advisory Board Director) blog post here.
Matthew talks with Kelsey Peterson, the woman behind the documentary film SUBMERGED - formerly titled “The Cure Map”. Matthew and Kelsey talk about her pathway to advocacy and the genesis of the Cure Map project, the recent announcement of being the recipient of the highly competitive ITVS Open Call award, the effects of the COVID-19 troubles and lots more.
Jason and Matthew interview Conquer Paralysis Now founder, Sam Schmidt (read his bio here). We discuss Sam’s history as a race car driver, his injury, the genesis for the foundation and his recent project Driven, an Activity Based Fitness center in Las Vegas Nevada.
Please reach out to us at email@example.com
Epsiode 34 introduces Jason Stoffer. We talk with Jason about who he is, where he hails from and how he came to be the new cohost on the podcast. We also talk with Kate Willette, author of Don’t Call It a Miracle: The Movement To Cure Spinal Cord Injury, about her new projects. It's an intimate and wide ranging conversation, we hope you’re going to enjoy it. You can email us at firstname.lastname@example.org We’d love to hear from you, and you can find out more about us at u2fp.org
Check out Episode 33 of U2FP's CureCast. We (Kate Willette, Jason Stoffer and Matthew Rodreick) talk with Dr. Mohamad Bydon from the Mayo Clinic. You may have seen the Good Morning America piece focused on 'super responder' patient one in the Phase 1 Clinical Trial using Adipose Derived Mesenchymal Stem Cells. We wanted to understand more about the study, how to go beyond the media hype and get an understanding of where Dr. Bydon sees this research going. Take a listen and drop us a note at email@example.com.
Kate, Matthew and Jason Stoffer (our new podcast host) have a conversation with Dr. Stephen Strittmatter, The Vincent Coates Professor of Neurology and Professor of Neuroscience at Yale School of Medicine. His discoveries over the last two decades of research led to the founding of ReNetX, who are applying that technology to discover if neurons can regrow in the chronic injury (in humans) by eliminating inhibitory growth factors.
We discuss the pre-clinical research, the mechanistic activity and the challenges of translating a discovery to clinical relevance.
Here are a few links to give you some background:
Background and clinical trial info: https://www.renetx.com/technology.html
Recent blog post from our Scientific Advisory Board Director, Sam Maddox: https://u2fp.org/get-educated/our-voice.html/article/2019/10/29/clinical-trial-enrolling-chronic-sci-renetx
Let us know what you think at firstname.lastname@example.org. If you want to help us feed the movement we need to cure paralysis from SCI you can donate to u2fp here.
Thanks for listening.
Matthew and Kate talk with Kathy Allen and Sandra Mulder, the first two participants in the EStand Trial in Minnesota. Kathy and Sandra (as well as Jered Chinook who participated in the Mayo Clinic’s Epidural Stimulation study) were invited to attend the American Spinal Injury Association Conference in April to share their personal experiences as part of a conversation facilitated by U2FP’s Executive Director, Matthew Rodreick. We thought it would be helpful to hear from them directly on the podcast.
We talk about their early experiences in the trial, where they are now, and what they continue to experience. It’s a nice follow up to the Epsiode #30 interview with Dr. David Darrow, the principal investigator of the EStand trial. If you haven’t listened to that one, check it out to fill in all the information.
We talk with Dr. Darrow about the EStand Trial using Epidural Stimulation for spinal cord injury, the trial design, progress, next steps, and its connection to U2FP's Cure Advocacy Network. The informal title of this episode is ‘The Transformation of Suffering’, which is David’s eloquent and personal description of why he’s doing what he does and what he is hoping to accomplish with the trial and treatment of SCI.
Matthew and Kate have a conversation with Dr. Lyn Jakeman, Director in the Division of Neuroscience at the National Institutes of Health. We spoke with Lyn a week ahead of NIH's SCI 2020: A Decade of Disruption. We discuss what led to the conference, why now and what they hope to accomplish from it.
Matthew and Kate talk with Dr. David Magnuson (University of Louisville) and Dr. Karim Fouad (University of Alberta) about how discoveries are translated, funded, and published. The central question in our conversation centers on some of the inherent problems in getting science to work for us.
Links discussed: SCI 2020
Here are the links to follow up with Kentucky's battle to retain funding for SCI research:
Dr. Karim Fouad is a Professor of Rehabilitation Medicine at the University of Alberta and Canada Research Chair for Spinal Cord Injury. Kate and Matthew talk with Karim about how he ended up in this field and the more recent research that he has been involved with: the discovery of pericytes and their role in inhibiting blood flow after injury and what might be done about that; the potential for inciting a controlled inflammatory response to open a window for recovery after injury; and Karim's ideas for improving the translation of science to clinical relevance.
Check it Out. As always, please write to us with your questions, suggestions and critiques at email@example.com
Matthew and Kate interview Tiffiny Carlson, from Minneapolis, MN. Tiffiny has been writing and blogging about spinal cord injury for many years. She now has a new podcast (True Wheelchair Life: SCI Life Uncovered). We talk about how she developed her career as a writer and advocate, her new podcast, and how she views changes within the SCI community as it relates to the Cure Movement.
As always, please drop us a note at firstname.lastname@example.org for comments, questions and suggestions.
Our latest CureCast interview features Dr. David Magnuson from the The University of Louisville’s Kentucky Spinal Cord Injury Research Center. Kate and Matthew talk with him about his research, specifically about the Central Pattern Generator and its provocative implications for recovery potential, rehab, exercise and more.
David is willing to answer any questions our listeners may have - here’s his email address: email@example.com.
And as always, please drop us a note at firstname.lastname@example.org for comments, questions and suggestions.
Check out this great discussion Kate and Matthew have with Dr. Nicholas Jeffery from Texas A & M. We talked with Dr. Jeffery about the recent clinical trial for paralyzed dogs using chondroitinase along with his future work. After you listen to our interview, go take a look at his presentation from Working 2 Walk 2015.
If we’re working from a 17th century model of publishing science, then what effect does that have on translating science to clinical relevance? Kate and I had a mind expanding conversation (for laypeople) around this idea with Dr. Adam Ferguson, Professor and Principal Investigator at the Brain and Spinal Injury Center at UCSF. You may have already seen his fascinating presentation at Working 2 Walk this past year, “Big Data Analytics: Bringing Dark Data to Light for Enhancing Discovery and Translation in Spinal Cord Injury“. We tried to unpack some of the ideas and possibilities that came from that presentation.
We have a great conversation with Kelsey Peterson and Maddie Brown - creators of the documentary-in-progress: The Cure Map. This is a must-listen for those in the community still trying to figure out how to contribute to our movement. After our interview with them, Kate Willette told me: "that was my favorite interview we've done so far!" You won't want to miss it.
In this episode of CureCast, we talk with Dr. Jerry Silver from Case Western Reserve University in Ohio. It’s a great conversation about his long-standing work to promote regeneration after spinal cord injury. He’s had some exciting recent results which we talk about and which you can also see in his presentation at Working 2 Walk.check out the latest SCI CureCast with Dr. Jerry Silver from Case Western Reserve University in Ohio. It’s a great conversation about his long-standing work to promote regeneration after spinal cord injury. He’s had some exciting recent results which we talk about in some depth.
Dr. Sasha Rabchevsky is a Professor of Physiology and a Research Scientist in the Spinal Cord and Brain Injury Research Center at the University of Kentucky School of Medicine. Sasha also lives with paralysis from a spinal cord injury.
A conversation with Dr. Michael Lane from Drexel University’s College of Medicine.
Kate and Matthew interview New Mobility magazine’s Senior Editor Ian Ruder. We discuss his role, the history of the publication and how SCI research fits into the story.
Kate and Matthew interview longtime SCI writer, blogger, journalist and advocate Sam Maddox. Sam was a correspondent for Time, Money and People magazine and a former journalism professor at the University of Colorado – Boulder. His latest project is a publication called, First 90 Days to assist people in getting the best information at the time of injury.
In this conversation, Matthew and Kate talk with Donna Sullivan, U2FP’s Special Projects Director and Chris Powell, U2FP’s Research Consultant. We discuss their entry into SCI advocacy, what they do at U2FP and the planning for the 2017 Working 2 Walk Science and Advocacy Symposium in Miami.
We discuss the work Chet is doing at UW and the Center for Neuro Sensorimotor Engineering…including a collaboration with NeuroRecovery Technologies and Reggie Edgerton. And we discuss some of the exciting news out of Washington state related to U2FP’s Cure Advocacy Network.
As a supplement, Chet discusses the collaboration with Reggie Edgerton and NeuroRecovery Technologies. To find out more about NRT, check out the video presentation from Nick Terrefranca (CEO at NRT) at Working 2 Walk 2016 in Minneapolis.
Kate and Matthew talk about the history of the Miami Project to Cure Paralysis, the Schwann Cell human clinical trial and the upcoming Working 2 Walk Symposium in Miami.
Kate and Matthew talk with Australian advocate Perry Cross. We talk about his injury, his foundation: Perry Cross Spinal Research Foundation and some of the issues around stem cell tourism.
Kate and Matthew talk with Lee Thibeault about the process of participating in clinical trials. Lee was one of the first individuals from the SCI community to participate in the early clinical trials of Stem Cell Inc. He talks candidly about his experience, its effects and the importance of participating in clinical trials to further the science to cure paralysis.
Marilyn, Kate and Matthew discuss the complicated research processes targeting the replacement and incorporation of neurons into the injured spinal cord. How do these replacement strategies fit into an already wired and connected system? And how can they be coaxed to graft into the existing system and actually work? Join the conversation with your comments by emailing us at email@example.com
A conversation with Leon Ford from Pittsburgh and Kate Chalfin from Philadelphia and their efforts to pass SCI research funding bill as a part of U2FP’s Cure Advocacy Network …
Don’t let the title scare you. We deconstruct the science and help you answer this question.
Kate, Matthew & Marilyn explore the world of Oligodendrocytes and then talk about recent news and rumors about the ongoing Asterias Biotherapeutics trial.
In this episode, Kate and Matthew ask the seemingly simple question that takes on complex meaning for many different members of the SCI Community. Check it out and then drop us a note at firstname.lastname@example.org.
Our inaugural episode!