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We just got some much-needed good news from Wisconsin! Governor Tony Evers has included $3M for SCI Research in his proposed budget for the next 2 years. Please send a message or call Governor Tony Evers to thank him!
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!
We still have slots to fill on Team U2FP for the Bank of America Chicago Marathon, but the clock is ticking ... there's just a little over a month left before the registration deadline.
I was on a Zoom call last week with four Unite 2 Fight Paralysis colleagues, several members of the Ohio Cure Advocacy Network (CAN), and with two Ohio State scientists, Phillip Popovich and Dana McTigue. The reason for the call was to mingle science and advocacy by discussing a new study from the Popovich lab that was made possible by CAN-channeled money from the Ohio legislature.
We are continuing to press our case for the critical value of the Minnesota SCI/TBI Research Grant Program. We're meeting with legislators, organizing advocates, talking to the media, sending messages and making phone calls. Please join the effort (no matter where you live) by sending Governor Walz a message or calling his office now. Simply share the following:
Our battle to preserve the Minnesota SCI/TBI Research Grant Program continues. And we need everyone from everywhere (any state or country) to call Governor Tim Walz and Rep. Connie Bernardy today before 3pm central time. And if you want to go the extra mile, call all the Committee Members.
Help U2FP advance curative interventions for those of us with an SCI - join Team U2FP for the Bank of America Chicago Marathon. When you join Team U2FP, you'll receive guaranteed admission to one of the premier marathons in the United States. We've already filled several spots, but we'd love for you and your friends to join our roster of runners or wheelers!
Despite the challenges of 2020, U2FP continued to grow thanks to the on-going success of our initiatives, the deepening of our strategic partnerships with scientists, clinicians and industry leaders, and a demand from the SCI Community to bring our advocacy efforts to more states. In order to grow in a strategic and sustainable way, we’ve added 2 new staff members and 3 new board members. We’re excited about all of them and wanted you to meet them. Take a look!
We and the SCI/TBI community in Minnesota need your help. Minnesota's Governor, Tim Walz, has introduced a preliminary budget that defunds the $6M Minnesota SCI/TBI Research Grant Program. It is one of many cuts he's proposed to account for other deficits in the state budget. Please call Senator Tomassoni, Rep. Connie Bernardy and Governor Tim Walz asking them to keep this critical program in place.
Maybe you saw this spinal cord research news, it has gotten a lot of media traction in the past week, partly because there was before and after video of treated animals, and yep, they got better. Is this headline backed by any different news than all the other “mice got better” stories you’ve seen in the past 50 years? Breakthrough? Too soon to know. Groundbreaking? Ditto. Let’s say it deserves attention. Here's the gist ...
Team U2FP continues building its roster for the Bank of America Chicago Marathon, on Sunday, October 10, 2021. We've already filled several spots, but we want you and your friends to join us! As one of the official charity teams for the Bank of America Chicago Marathon 2021, we provide guaranteed entries for the race in return for your commitment to fundraise for Spinal Cord Injury Research.
Anyone who’s experienced a life-altering trauma has this knowledge that sometimes things go terribly wrong. The lingering grief resides a couple of layers down, but the knowledge is always right there. Like a phantom doorway out on the corner of your mind. For me, this persistent knowledge requires a choice. Do I just acknowledge that it's there and go on about my business, do I ignore it or do I use it as fuel for change?
Check out this great new grant opportunity from our friends at the Neilsen Foundation, starting just after the new year!
As promised, we've just made public the first of six video segments from our Working 2 Walk Virtual Symposium this past October. If you weren't able to join us then, you can now watch the Clinical Research portion of the symposium on our video library page (or on our YouTube channel).
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.
As 2020 comes to a close, I've been trying to take stock of the past 12 months. I know many of us have experienced deep and difficult pain. And that pain has been compounded by a sense of fear and the unknown. Fortunately, in my conversations with many of you, I've been encouraged (but not surprised) by our community's resilience and staying power. After all, we in the SCI Community were familiar with the concept of social distancing long before Covid-19 arrived.
Team U2FP is building its roster for next year - and we're looking for runners and wheelers to join our ranks for the Bank of America Chicago Marathon 2021! This coming year's race is on Sunday, October 12, 2021. As in years past, Team U2FP is an official Charity Partner for the Bank of America Chicago Marathon. We have 25 spots to fill - and we want you!
Let's continue to raise our voice, share our struggles and joys together, and use the energy from this emotional roller coaster constructively to get ourselves and our loved ones the functional recovery they deserve.
Giving Tuesday is just a week away - next Tuesday, December 1st! What is Giving Tuesday? It's a global generosity movement, unleashing the power of people and organizations to transform their communities and the world.
We want to use this day of giving to encourage you to make a year-end gift, or become a monthly donor to U2FP. U2FP continues to work hard for the SCI Community, and these two groups of supporters have made a huge difference in our being able to make important gains, such as:
We are seeing the benefits of U2FP’s choice to facilitate proximity, collaboration and cross-fertilization. The research enterprise is now recognizing - and sometimes even requiring - that the SCI Community’s voice is heard at every intersection of advancement: discovery, translation, clinical study and commercial development. U2FP is already well-positioned at these intersections. That is the choice we’ve made and will continue to expand upon.
Team U2FP is building its roster for next year - and we're looking for runners and wheelers to join our ranks for the Bank of America Chicago Marathon 2021. Join Team U2FP! As one of the official charity teams for the Bank of America Chicago Marathon 2021, we provide guaranteed entries for the race in return for your commitment to fundraise for Spinal Cord Injury Research.
Could there finally be a bit of a bandwagon effect happening in spinal cord stimulation? There are clinical trials aplenty, including implanted stimulators and the ones that work on the skin surface, without surgery. There are now companies testing spinal cord stimulators with an eye on the market, trials with kids are happening, and there are SCI clinicians in the real world using stim devices that are commercially available, albeit not designed for paralysis.
As 2020 draws to a close, many of our supporters may be making arrangements for their year-end charitable contributions. Given the tumultuous year this has been, I wanted to make the SCI Community aware of some new tax incentives made available by the CARES ACT that was passed earlier this year. Hopefully, these recent additions to the tax code can help you maximize your giving potential while reducing your tax burden.
This year was my first opportunity to attend Unite 2 Fight Paralysis’ annual symposium: Working 2 Walk. I heard about this conference through my friend here in Ohio, Ian Burkhart, who has a C5 SCI. (You may also know Ian from U2FP's Cure Advocacy Network, where he and other SCI advocates helped secure $3M for SCI Research here in Ohio; or you may have read about his success with an experimental brain implant). When registration for Working 2 Walk opened, I also heard how impactful and meaningful this conference was from Drs. Phil Popovich and Dana McTigue, and so was excited to have a chance to be a part of it.
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.
This is it - the last day to register for the Working 2 Walk Virtual Symposium (Thursday, October 22nd - Saturday, October 24th). We still have deep discounts available (75%!) for Individuals with an SCI, their families and caregivers.
Working 2 Walk starts this week (!) on Thursday, October 22nd and runs through Saturday, October 24th. Registration closes tomorrow night, so don't wait - register now! Over the last couple months, we've been sending out summaries of the various stakeholder groups we'll be featuring at the Symposium. In case you missed any of them, here they are:
- Pre-Clinical Research: broadly defined as research done in laboratory experiments and animal models
- Clinical Research: research performed with humans
- Industry: companies that are trying to bring a research discovery to a clinical product
- Funder: agencies or foundations that fund research of all kinds
- SCI Advocacy: SCI foundations/nonprofit organizations working to influence all the above stakeholders
How things get made. There’s a whole slew of books, podcasts, YouTube channels and - if your social media feeds are anything like mine - lots and lots of short videos showing how all sorts of things are created from Twinkies to robots. Well, the next session highlight is a little bit like this, albeit more complicated: Industry
Stem cells are on the California ballot. Again. Sixteen years ago, voters overwhelmingly supported Proposition 71, which created the $3 billion California Institute for Regenerative Medicine (CIRM). The agency has spent just about all the money, and they’re asking for more, Proposition 14, this time for $5.5 billion. If they don’t get it they will either disband or adapt, perhaps as a nonprofit of some sort.
Today, we’re giving you a summary of the pre-clinical research session at this year's Working 2 Walk Symposium. Pre-clinical research can be roughly defined as the relationship between discovery and early stage translation toward clinical use.
For some of us, the roots of our grief are inextricably wound up in the urgency to realize curative therapies. But grief is not enough and often not the best guide. We must grow our knowledge of the science and the various systems within which it operates in order to fund research well.
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.
One of the first steps in being an advocate for finding a cure for paralysis is to elect officials that will listen to our concerns, obtain research funding, and enact legislation to improve our quality of life and work with us to find a cure.
We are continuing to feature each of our 5 key stakeholder sessions at Working 2 Walk. Today we want to talk about the SCI Advocacy Session (You can read the summary of the clinical research session from the last newsletter here). Attendees will hear from 3 individuals from the SCI community - from 3 different parts of the world - about how they see the problem of spinal cord injury, how they are addressing it, and where they believe we need to go ...
Spinal cord nerves don’t grow in adults, but once upon a time, when we were embryos, these cells grew like crazy. What happened to their growth motor, could we find it and turn cell growth back on, especially after injury?
This year’s Working 2 Walk Symposium is coming up quick, and we’re going to be dropping these notes to explain a little bit of the agenda in the hope that it will stir your thoughts and generate questions that will lead to some critical and valuable conversations for all of our attendees.
How do we create longevity within a movement? We foster community. We connect. We find joy together so we can fight together. Simon Rosser, PhD, MPH made me hip to this concept over a conversation we had during production for SUBMERGED. I was interviewing Dr. Rosser about his involvement with AIDS activism in the 80’s and 90’s, how their community accomplished what they did, and the things we, as the SCI community searching for a cure, could learn from their efforts.
Sometimes I fear that our community is not expected to venture into the deep end of this pool. But we are asking you - the SCI Community - to seek deeper waters. It's one of the main reasons U2FP exists: to educate and unite our community towards an effective relationship with the whole cure enterprise, its strategies and one another.
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.
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).
If you follow spinal cord injury research, you will sooner or later come across the name Bob Yant. If you don’t yet know him, let me introduce you to the ultimate cure warrior.
In case you haven’t heard, The Bank of America Chicago Marathon (BACM) and the Twin Cities in Motion (TCM) Marathon and 10-mile races have been cancelled and are transitioning to virtual events, due to Covid-19. Fortunately, we anticipated this happening awhile back. Which is why Team U2FP launched our own Virtual Run-Walk-Roll last month!
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.
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.
A 70-patient clinical trial has begun enrolling people with high cervical injuries to study the effect of a nerve transfer procedure on hand and finger function. The lead site for the trial is Washington University in St. Louis. Wilson Ray, M
Due to the Covid-19 pandemic, many fundraising events - including marathons - have been postponed, cancelled or transitioned into virtual events. Team U2FP's participation in The Bank of America Chicago Marathon and the Medtronic Twin Cities in Motion Marathon & 10-mile races have been our largest annual fundraisers. ln recent years, Team U2FP has raised up to $35,000 from these events! These dollars are vital to help U2FP fuel all of our initiatives, bringing us closer to our goal of achieving functional recovery for those living with an SCI.
That's Dr. Phil Popovich presenting on The Gut Microbiome and Spinal Cord Injury at Working 2Walk 2019. Dr. Popovich is the Professor and Chair in the Department of Neuroscience at Ohio State University. His presentation was one of the most highly rated talks of our conference this year! You can watch Dr. Popovich’s presentation in full right now on our Video Library page, along with Dr. Dana McTigue’s adjoining presentation: Spinal Cord Injury Causes Chronic Liver Pathology and Metabolic Disruption in Rodents.
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.
Unite 2 Fight Paralysis is transitioning its 15th Annual Working 2 Walk Science & Advocacy Symposium to a fully-virtual, livestream meeting! This unique, interactive event will take place over the course of three days, from Thursday, October 22nd - Saturday, October 24th, 2020! With the ongoing health risks posed by COVID-19, particularly for the SCI Community, we have decided that an in-person meeting this year would be unwise.
It still blows my mind that I can’t feel 75% of my body, and every spring there is a rebirth of that longing, an awareness that rises to the surface of how alone and trapped I sometimes feel. I feel it every season, in different ways, but for some reason spring is the most intense. It throws me, and I find myself nostalgic for the past and yearning for the future, wishing that I could have these moments of joy, pleasure and expression back in my life; these moments in your body, in the sensuousness of life that ground you, empower you, release you and ignite you.
Two research items to report today. The first a cool study from the Mark Tuszynski lab on how injured brain cells revert to a genetically immature state and if that state is maintained using certain stem cell grafts, the brain cells can be encouraged to regenerate. The second is a study starring Ian Burkhart (who help U2FP's CAN push through $3M for SCI Research in Ohio last year) who has a high cervical injury and a chip implanted in his brain.
"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
I ran in the Wings for Life World Run Sunday. There were 77,103 of us in 104 countries around the world, each alone due to prudent social distancing, but all together for the cause of raising money for spinal cord injury research. We raised $3 million for SCI research! This is a cool race. First off, everybody starts at the exact same time. 1 p.m. in Paris, 7 p.m. in Beijing. Here on the West Coast, that’s 4 a.m., dark and solitary.
Living with paralysis requires living with risk. The COVID pandemic with all of its far-reaching implications serves as an acute reminder of our sense of urgency. We are committed to pursuing and accelerating cures for paralysis through our collaborative advocacy, activist and education initiatives.
You may have heard about the upcoming online event - #GivingTuesdayNow - meant to support nonprofits in these tough economic times. But did you know that the recent stimulus bill passed by Congress to address the economic impact of Covid-19 added a tax break to incentivize charitable contributions?
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 and eventually the founding of the company.
U2FP is helping to create an SCI Community-centric GPS. A GPS that helps us to understand where we are, where we’ve been, what and to whom we’re connected, and - realistically - where we are in relation to cures. Because what we do have in the SCI Community is influence. No one else knows this injury like we do and because of that we have to speak up.
In this interview we talk with Drs. Sasha Rabchevsky and Michael Lane 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.
U2FP continues its effort to locate and redistribute vents sitting unused in basements or garages. Need an incentive? How about $1000! The Valley Medical Center Foundation, in San Jose, CA, is offering a bounty for vents. You can find out more information and fill out their online form here
The America Spinal Injury Association (ASIA) has joined U2FP in our effort to identify used/unused ventilators for donation.
These are indeed challenging times. Here at U2FP, we are hoping the lab lights are turned on again soon, and we are preparing for that day. We continue to form alliances with cure advocates, the research community and state legislators, always focusing on treatments for chronic spinal cord injury. Especially during this big COVID pause, we’re committed to keeping the community informed.
In other words, persons with disabilities should not be put at the end of the line for health services during emergencies. “Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” says the HHS. So, what do providers need to do? Ethicists recommend they direct resources to those with the greatest chance of survival and the longest remaining life spans — a pragmatic utilitarian approach. How would that work?
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.
A few days ago U2FP put out a call out to our community to identify unused or previously used ventilators that could be brought back into circulation, given the shortages across the country due to COIVD-19. One of the first responders was Jessical Fredette, a woman living in St. Paul MN (who happens to be a wonderful photographer) who had 2 ventilators in good working order and no longer needed them. She was willing to donate them provided they could be put to use.
I thought I’d share some much-needed GOOD news during this crazy time. Back in July, SUBMERGED was 1 of over 300 films to apply for funding by ITVS Open Call. In November, I received an unforgettable phone call: SUBMERGED was 1 of only 7 films green-lit for funding! (Only 2%!). And now, having just received my contract in the mail this week, it’s finally official: we have been awarded funding!!
So many in our SCI community have had plenty of experience with this so-called ‘social distance’ (I prefer the phrase ‘physical distancing’) over the course of the injury. It’s a kind of twisted rite of passage that has both caused significant pain and significant strength. Of course, as a family member my ‘physical distancing’ was differently short-lived and far less comprehensive than my son’s. But most of you in a weird irony have already lived through the fear, anxiety, pain and loneliness that comes in tow. And some of you live with it still.
Jason and Matthew interview Conquer Paralysis Now founder, Sam Schmidt (see his bio below). 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.
Paul Lu, a scientist at the Center for Neural Repair at the University of California, San Diego, has recently joined the U2FP Scientific Advisory Board. We welcome his expertise and thank him for his commitment to the field. Lu’s work focuses on repair of chronic spinal cord injury. His motivation is in many ways personal: Lu’s own injury drives him toward finding cures. “My goal is to solve the mysteries of spinal cord repair, for all of medicine, and also for myself,” says Lu. “It’s an exciting time in my field of work, and I have always believed that science will restore a meaningful degree of my lost function.” Let’s meet Dr. Lu and explore his research.
I find myself back in a place where my heart is so broken, but I’m not scared this time. Even though I don’t have my Dad here, I’m still his daughter. And even though I’m paralyzed, I am still me.
Team U2FP is proud to announce that registration is open for one of our biggest fundraisers of the year: the Medtronic Twin Cities Marathon and Medtronic TC 10 Mile races.
Researchers, clinicians, companies, investors and those who are injured tend to think that if the right people are in the room, then curative treatments will eventually happen, organically. For a long time, I believed simply that there just weren’t enough rooms, events and opportunities for all the ‘right’ people to be in the room together. While I still think this is true to some degree, I’ve come to believe that the assumption falls short of what we need.
February has been a good month for the Cure Advocacy Network. We have made progress on every one of our state fronts. This month, I invested much of my time in getting all of our state advocates booked for individual state conference calls and am helping to guide and shape our next steps for action in each of them.
After a mostly quiet grant review period in Q4 of 2019, the SAB got very busy in 2020 with eight separate grant proposals coming in a single day in January, all from the same funder. The Bryon Riesch Foundation, based in Wisconsin, has asked us to review over $500,000 in potential funding from seven labs.
In Epsiode 34 of U2FP's CureCast podcast, we introduce Jason Stoffer. We talk with Jason about who he is, where he hails from and how he came to be the new co-host 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 that we think you’ll enjoy.
Momentum behind Team U2FP for the Bank of America Chicago Marathon continues to grow. Not only do we have half of our spots filled, but we now have a Team Captain for the BACM! We’ll be introducing her here in this space in the coming weeks, so keep an eye out for that! As a reminder, the Team Captain is a new position we created this year, to further support all Team U2FP runners and wheelers during their training, race day, and through the end of 2020.
Check out Episode 33 of 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.
For a small organization, U2FP is having a big impact on where and how curative interventions are happening. With our Cure Advocacy Network’s most recent victory in Ohio this past year ($3M of SCI research funding), we’ve increased the SCI Community’s impact on the curative research landscape to almost $12M. And $4M of that money has come just in the last year and half! Here’s the latest on what we have cooking right now in each of the state’s we’re working in:
Our roster of Team U2FP runners and wheelers for the Bank of America Chicago Marathon (on Sunday, October 11, 2020) continues to grow! We have nearly half of our spots filled, with a growing list of interested racers who have signaled their intent to join our team. Don’t wait until it’s too late - join Team U2FP for the Chicago Marathon today by clicking here right now!
The Craig H. Neilsen Foundation is pleased to announce its Psychosocial Research (PSR) funding opportunity, opening February 12, 2020. Eligible organizations interested in research to address psychological and social factors that affect health, functioning and quality of life for people living with SCI are encouraged to apply.
A research proposal by the EndParalysis organization to continue a project at the Cleveland Clinic has been approved by U2FP’s Scientific Advisory Board (SAB) after initially getting a lukewarm review.
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.
You've helped Unite 2 Fight Paralysis accomplish so much this past year. From passing $3M of smart SCI Research funding in Ohio, to adding livestreaming to this year's Working 2 Walk Symposium, to the post-production development of the SUBMERGED Film Project (aka The Cure Map).
Since I became a quadriplegic/tetraplegic, there have been drastic changes in my physical activity, my sex life and my general ability to connect with others physically - and in turn energetically and emotionally. I’m always wondering how these changes and losses from my disability have affected my mental and emotional health, because I feel them. I struggle with these drastic shifts everyday.
I published an overview of some current clinical trials (Clinical Trials: Success, Promise, Prison) last Friday, December 6th, including an analysis of the recent stem cell recovery story featured on ABC's Good Morning America.
The 2019 Working 2 Walk (W2W) Symposium in Cleveland, Ohio, was the first W2W Symposium I have attended. It won’t be my last. I was injured in the late summer of 2005 during a pool-party gathering with friends and fellow teammates after a high school football practice ...
As you probably saw in our newsletter and recent social media posts, the first registration period (where the fundraising threshold is the lowest) for the Bank of America Chicago Marathon 2020 concluded on December 3rd. We got a great start on registrations and are now almost half-way to filling our roster! The best news is that there's still time to join our team and make a difference for the SCI Community.
We have taken a large step forward in Ohio. On November 7, the Ohio Cure Advocacy Network (CAN) met with the Chancellor of the Department of Higher Education and his staff to discuss setting up the advisory board which will approve disbursement of the $3 million our CAN advocates helped pass there in July. We've been moving quickly ever since then and continue to make great progress ...
There are over 200 current clinical trials in the U.S. targeting spinal cord injury, and it’s getting more difficult to keep them all straight. Here is a look at several recent or ongoing trials of note, and some SCI trial related news.
The Craig H. Neilsen Foundation is pleased to announce its 2020 Creating Opportunity & Independence (CO&I) funding opportunity for qualifying nonprofit organizations that strive to improve the quality of life for individuals living with or affected by spinal cord injury (SCI).
The FDA/CDRH is hosting this webinar tomorrow, November 12, regarding patient engagement. We thought you would be interested in attending. Below are the details about the event. The FDA is pleased to share that on Tuesday November 12th 2019 from 2:00 – 2:45pm ET, Mimi Nguyen from FDA’s Center for Devices and Radiological Health will be holding a Webinar to discuss the Center’s recent Draft Guidance:
Though the Bank of America Chicago Marathon 2019 & Twin Cities in Motion Marathon and 10-mile races are behind us, it's not too late to celebrate Team U2FP's accomplishment by donating to their extraordinary campaigns: they ran and wheeled 26.2 miles for SCI research! Missed your chance to join Team U2FP this year? Don't worry - we'll be following up soon with details on how to sign up for either the Bank of America Chicago Marathon 2020 or the Twin Cities in Motion Marathon and 10-mile races.
The SAB continues to foster new and previous charity clients to take advantage of our rigorous scientific review services. We processed a grant application in October from a Netherlands group called
Major steps are in the works for creating an advisory board in Ohio to allocate the $3 million in SCI funding our CAN activists helped pass there in July of this year. And the $10 million SCI Research Bill we introduced in Wisconsin (also this past July) with Rep. Jimmy Anderson is ramping up as we monitor its progress through the committees of the Wisconsin legislature, to eventually be voted on in the Senate and Assembly floor.
Though you often see substantial recovery in animal models of SCI, we have not yet had a treatment that worked in rats translated to human patients. The reasons for this are many and complicated. They are still being hotly debated.
Biotech start-up ReNetX has begun enrolling people with chronic cervical spinal cord injuries in a clinical trial to test a molecular cocktail called Nogo Trap. This is a two-part trial that will eventually include 66 patients.
Given the great news that our Ohio Cure Advocacy Network (CAN) activists helped pass another $3M in SCI research dollars, we thought you might like to hear from someone who had their wheels on the ground with us in Ohio, from start to finish. Here's a brief video that Allie Leatherman sent us (just before the $3M Ohio bill passed) about why she got involved with U2FP and what she's gotten out of it.
Thanks to your support, and the passion and persistence of our Cure Advocacy Network (CAN) advocates in Ohio we’re happy to announce that we have won another legislative victory! We just passed a $3 million earmark for Spinal Cord Injury (SCI) research in Ohio’s higher education budget.
It's been an exciting few days for our Cure Advocacy Network (CAN) - this time in Wisconsin. It's been over 2 years in the making, but last week we attended a press conference at 1 pm, called by Rep. Jimmy Anderson (our champion legislator who has an SCI) to formally introduce our Bill proposing to establish $10 million in funding SCI research that is pursuant of functional recovery from paralysis.
I just cried my eyes out watching Brené Brown’s - The Call to Courage.
Maybe because I’ve spent the last seven years since my injury being courageous. For god’s sake, I lived at the frickin Courage Kenny Rehabilitation Institute for three months going through rehab after my spinal cord injury. Every single day I took chances and wussed out; succeeded and failed.
Every. Single. Day. It was terrifying.
At the 2016 Working 2 Walk Science and Advocacy Symposium in Minneapolis we tried something a little different. We asked attendees to make a commitment to advocacy for the coming year. At the end of the Symposium, we had almost 60 people who committed to some form of advocacy. Amongst those 60 individuals was Kate Chalfin. She wanted to advocate for a Bill to fund SCI research in her home state of Pennsylvania, modeled after Minnesota's success. Kate and her husband Jake, along with many others in our PA Cure Advocacy Network (CAN), stuck with the hard work of learning 'how the sausage is made'. And last year - after 2 years of persistent work ...
Summer is finally here in our part of the world, which means that our 14th Annual Working 2 Walk Science and Advocacy Symposium is just around the corner (October 4-5 in Cleveland). While we continue our planning efforts to ensure this year's Symposium is the best yet, we're excited about how many of the details are coming together! Below are some recent developments to take note of ...
Our Fuel the Journey campaign to add 35 new monthly donors has gotten off to a great start. Thanks to your enthusiasm we've already added 5 new monthly donors! Today we wanted to share another brief video that Alejandro Leal sent us about why he gives monthly to U2FP.
It's been a couple of months since our last podcast, but we're back with a fresh episode of U2FP's CureCast. In our latest interview, Kate and Matthew talk with Dr. David Darrow, the Minneapolis neurosurgeon who is the Lead Investigator in the ESTAND trial ...
Last week we kicked off our Fuel the Journey campaign - an effort to strategically leverage our education, advocacy, and research initiatives as well as keep pace with the great legislative progress our Cure Advocacy Network (CAN) activists are making in Pennsylvania, Ohio, and Wisconsin. Today we wanted to share with you a brief video that one of our monthly donors - Elizabeth Dierdorf - sent us about why she gives monthly to U2FP ...
As Kate Willette wrote in her must-read book, Don’t Call It A Miracle, the medical breakthroughs that reduced the impact of the AIDS epidemic were brought about not by a brilliant scientist, or a rich investor, or an innovative biotech company. Rather, HIV/AIDS became treatable primarily because the brilliant scientists, rich investors, and innovative biotech companies were helped to succeed through the persistent advocacy of the affected ‘patient group’ ....
We’re always talking about the need for collaboration here at U2FP. Indeed, it’s how we approach our work everyday. We constantly ask ourselves: who can we add to help enhance this difficult SCI conversation? How can we connect this young, creative advocate with the right scientists for her documentary? How can we arrange for this device entrepreneur to meet the smart post-doc we know who might speed his prototype out of beta testing? How do we articulate the frustrations of this journey while still remaining hopeful? What are the best practices for separating out the real science from the hype - and how can we help others in the SCI Community do the same?
We have another video uploaded and ready to view from last fall’s Working 2 Walk Symposium. Wolfram Tetzlaff’s presentation at Working 2 Walk in Vancouver elicited a broad range of responses from our attendees. His talk — Locomotor Recovery Following Moderate or Severe Contusive SCI Does Not Require Oligodendrocyte Remyelination — calls into question “the interpretation/validity of rodent models used in support of clinical trials of transplantation of oligodendrocytes precursor cells” ...
There’s not a day that goes by that I don’t catch myself daydreaming of being able-bodied again, always dancing in my head. Not one day that I don’t miss TOUCH the way it used to be, and that I don’t long for that feeling. Not one day that I don’t wish that this would all just go away, and I could have my body back ...
We’ve added another marathon this year! We’re looking for WHEELERS and RUNNERS to join Team U2FP in both our Chicago race and Twin Cities races (new this year!) right now. Registration for the 2019 Bank of America Chicago Marathon is open through March 31 ...
Last month, I had the opportunity to represent U2FP as well as the North American SCI Consortium (NASCIC) in addressing a gathering of scientists, therapists, clinicians and the SCI Community at a 2-day NIH conference entitled SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research (you can watch the conference here & here if you missed it). This was a unique opportunity, in that it may have been the first time that the SCI Community was formally part of these meetings and had a chance to make a presentation to the audience ...
As Kelsey mentioned in her post last week, Barry Munro's talk at Working 2 Walk this past fall in Vancouver made a lasting impact on her. She wasn't the only one. Lot's of attendees told us how impactful Barry's presentation was. Check it out!
When I attended Working 2 Walk last October, Barry Munro (CSRO’s Chief Development Officer & a U2FP Board Member) shared words about us being the “stakeholders.” Those words have really stuck with me. I’ve been thinking more and more about the weight of our influence on the effort for Cures. And by “us” I mean those of us who know what it’s like to sit in a chair; I mean the able-bodied warriors ...
Authors: Elisabeth SERGER, G. KONG, I. PALMISANO, E. MCLACHLAN, S. DI GIOVANNI Lab Abstract: Mammalian axonal regeneration is limited in the injured peripheral nervous system (PNS) occur and it fails in the central nervous system (CNS) such as after a … Continue reading →
You may remember Megan Gill, of the Mayo Clinic, as one of the authors on that Nature article that was picked up by several major media outlets back in September of last year. Megan was able to use her time at Working 2 Walk to deepen and further contextualize that paper's findings in her presentation, Spinal Cord Epidural Electrical Stimulation: An Update on Motor and Mobility Outcomes.
Our Cure Advocacy Network is working hard right now - we've been at the Capital in Ohio this week, meeting with legislators Tuesday and yesterday, and have another round of meetings today. By the end of the day, we will have had over 30 meetings with legislators, and we may have found our Bill’s author.
Our new contributing science writer, Alina Garbuzov, follows up on her previous post about the importance of the SCI Community educating themselves. Here, Alina outlines specific resources for where to get started, how to navigate the daunting landscape of scientific research on the internet, as well as some suggestions for keeping a balanced perspective through it all.
“Injuries to the spinal cord can cause permanent paralysis and even lead to death, with little to no hope of regaining lost functions once the trauma has occurred. Dr Jerry Silver and his team at Case Western Reserve University Medical … Continue reading →
Authors: S. DI GIOVANNI, E. MACLACHLAN, I. PALMISANO, T. HUTSON, A. HERVERA, F. DE VIRGILIIS, M. DANZI, J. BIXBY, V. LEMMON Lab Abstract: Regeneration after peripheral nerve injury depends on the activation of key signalling events, the recruitment of transcription … Continue reading →
The goal of the ‘SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research’ conference is to initiate discussion across the SCI research community to launch a new decade of research that disrupts traditional barriers and brings about … Continue reading →
“Engineered Neuroplasticity for Spinal Cord Rehabilitation” by Chet Moritz, PhD, PT (University of Washington), at the 7th Annual International Symposium on Regenerative Rehabilitation.
If you have a spinal cord injury, you need to know more science than the average, able-bodied person. Specifically, you need to know neuroscience and some basic biology. I’ve learned this as an SCI patient three years out from my injury; and as a biologist who now works in a spinal cord injury lab. While I believe all citizens need to have a basic scientific understanding, I would argue that if you are facing a difficult diagnosis, such as SCI, you need science even more.
Below are three reasons you should become an armchair neuroscientist ...
Our Cure Advocacy Network (CAN) activists in Pennsylvania had the opportunity to be at Governor Tom Wolf’s signing of the $1M PA Spinal Cord Disability Research Grant Act (thanks to the Canadian/American Spinal Research Organization’s travel support).
The Bill (passed in October 2018) allocates $1 million to fund research in Pennsylvania and is pursuant of the functional recovery of people living with Spinal Cord Injuries.
Authors: A. GUIJARRO-BELMAR, M. VISKONTAS, X. BO, D. SHEWAN, W. HUANG Lab Abstract: Spinal cord injury (SCI) is a highly debilitating trauma affecting millions of patients worldwide with no cure. The challenges for spinal repair include a lack of intrinsic … Continue reading →
We continue our roll-out of newly available videos from this past year's set of presentations at Working 2 Walk 2018 in Vancouver. We decided Dr. Lyn Jakeman's presentation, The Breadcrumb Path from Bench to Bedside, would be timely as we gain insight into The National Institute of Health's upcoming event: SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research.
Authors: L.V. Zholudeva, Michael.A. Lane Lab Abstract: “Cellular transplantation for repair of the injured spinal cord has a rich history with strategies focused on neuroprotection, immunomodulation, and neural reconstruction. The goal of the present review is to provide a concise … Continue reading →
In this presentation, Dr.Alicia Fuhrman in the Department of Rehabilitation Medicine, University of Washington, explains the complex and rapidly expanding field of stem cell medicine. She begins by clarifying what stem cells are and how they are used in different … Continue reading →
Now that the new year is in full swing, we have a fresh set of Working 2 Walk videos that will be headed your way in the coming weeks and months. Dr. Andrei Krassioukov gave an invigorating presentation at Working 2 Walk 2018 in Vancouver this past year. It generated a fair amount of conversation amongst both the SCI and scientific communities in attendance.
Authors: Kyriakos Dalamagkas, Magdalini Tsintou, Amelia Seifalian, Alexander M. Seifalian Abstract: “Spinal cord injury is a chronic and debilitating neurological condition that is currently being managed symptomatically with no real therapeutic strategies available. Even though there is no consensus on the best time … Continue reading →
Kelsey here. Coming to you from the lovely Bay Area where we (my friend and film partner, Madeline Brown, and I) have relocated to edit our upcoming film. It’s the story of my personal journey through SCI, the power of community, and why a cure is in our hands. Hard, fun and exciting work! In addition to this massive undertaking, I’ll be sharing my thoughts with you here on a semi-regular basis. Because I think we need more voices (mine, yours, and others) telling OUR story of what life is like with a Spinal Cord Injury.
Authors: Jacob Koffler, Wei Zhu, Xin Qu, Oleksandr Platoshyn, Jennifer N. Dulin, John Brock, Lori Graham, Paul Lu, Jeff Sakamoto, Martin Marsala, Shaochen Chen, Mark H. Tuszynski “Current methods for bioprinting functional tissue lack appropriate biofabrication techniques to build complex 3D micro architectures essential for guiding cell … Continue reading →
Authors: STEVEN L. CETO, K. SEKIGUCHI, A. NIMMERJAHN, M. H. TUSZYNSKI; Lab Abstract: Neural stem cells (NSCs) grafted into sites of spinal cord injury (SCI) may act as new electrophysiological relays between host neurons above and below the lesion. Host … Continue reading →
Authors: M. RATH, D. G. SAYENKO, Y. P. GERASIMENKO, V. EDGERTON Lab Abstract: Recently we have developed the non-invasive electrical spinal stimulation technology for postural control in SCI subjects during standing. However, the potential of non-invasive spinal stimulation to facilitate … Continue reading →
Authors: Satoshi Nori, Mohamad Kahazaei, Christopher S. Ahuja, Kazuya Yokota, Jan-Eric Ahlfors, Yang Liu, Jain Wang, Shinsuke Shibata, Jonathon Chio, Marian H Hettiaratchi, Tobias Fuhrmann, Molly S. Shoichet, Michael G. Gehlings Summary: “Treatment of chronic spinal cord injury (SCI) is … Continue reading →
Authors: C. JUZWIK, B. MORQUETTE, Y. ZHANG, E. GOWING, C. BOUDREAU-PINSONNEAULT, V. VANGOOR, R. PASTERKAMP, C. MOORE, A. BAR-OR, A. E. FOURNIER Lab Abstract: Neuroinflammation can positively influence axon regeneration following injury in the central nervous system (CNS) but the … Continue reading →
Happy Holidays from Spinal Cord Injury Research and Science Report – – thank you to our followers in 175 countries around the world.
Authors: Matthias Walter, Amanda H. X. Lee, Alex Kavanagh, Aaron A. Phillips and Andrei V. Krassioukov “Regaining control of autonomic functions such as those of the cardiovascular system, lower urinary tract and bowel, rank among the most important health priorities … Continue reading →
In preparation for the February NIH SCI 2020, a 4 Part Series begins here at the SCI Research Report during the first month of 2019. By the end of this informational series, you will feel better prepared to participate at the … Continue reading →
“In 2013, Dustin Shillcox became 1 of the first 4 people in the world to be a part of groundbreaking epidural stimulation research at the University of Louisville. A set of electrodes was surgically implanted onto his spinal cord below the level of his injury and a … Continue reading →
The Brooks Cybernic Treatment Center is the only US-based facility offering HAL technology to those with a spinal cord injury. Cybernics is a new academic field that is centered on cybernetics, mechatronics and informatics fused with various other fields including … Continue reading →
Not many people know that in my early 20’s I did a short stint as a broker trainee on the Philadelphia Stock Exchange. Those of you who know me (even a little bit) will understand why this career path didn’t pan out for me. During our lunch breaks, while my peers were hungrily trading their way up the ladder, I was reading ...
Authors: *E. S. ROSENZWEIG, J. H. BROCK, P. LU, H. KUMAMARU, J. L. WEBER, C. A. WEINHOLTZ, R. MOSEANKO, S. HAWBECKER, R. PENDER, C. L. CRUZEN, E. A. SALEGIO,, J. HUIE, C. ALMEIDA, Y. S. NOUT-LOMAS, L. A. HAVTON, A. … Continue reading →
Authors: V. PETROVA, R.EVA, J.W. FAWCETT Lab Abstract: Numerous extracellular and intracellular processes contribute to the failure of long-range regeneration in the adult central nervous system (CNS) after injury. One reason why adult CNS axons have poor regenerative capabilities is … Continue reading →
Authors: Shuxin LI, F.NATHAN, Y.OHTAKE, H.GUO, A.SAMI Lab Abstract: Severed CNS axons fail to regenerate in adult mammals and there are no effective regenerative strategies to treat patients with CNS injuries. Several genes, including PTEN and Krüppel-like factors, regulate intrinsic … Continue reading →
Promising results provide hope for humans suffering from chronic paralysis “Millions of people worldwide are living with chronic spinal cord injuries, with 250,000 to 500,000 new cases each year—most from vehicle crashes or falls. The most severe spinal cord injuries … Continue reading →
We are looking for runners and wheelers interested in joining Team U2FP for the 2019 Bank of America Chicago Marathon. As one of the official charity teams for the Chicago Marathon, we provide guaranteed entries for the race in return for your commitment to fundraise for Spinal Cord Injury Research.
Authors: B. NIEUWENHUIS, R.EVANS, C.S. PEARSON, A.C. BARBER, J. CAVE, P.D. SMITH, J. FUCHS, B.J. EICKHOLT, H.M. GELLER, K.R. MARTIN, R. EVA, J.W. FAWCETT Lab Abstract: Injury to the central nervous system (CNS) has severe consequences because adult CNS axons … Continue reading →
Identifying the most effective types of integration-free human iPS cell-derived neural stem/progenitor cells in the treatment of spinal cord injury Authors: T. IIDA, N. NAGOSHI, J. KOHYAMA, O. TSUJI, M. MATSUMOTO, M. NAKAMURA, H. OKANO Lab Abstract: INTRODUCTION: We have … Continue reading →
Authors: D. GARCIA-RAMIREZ, N. HA, L. YAO, K. A. SCHMIDT, S. F. GISZTER, K. J. DOUGHERTY Lab Abstract: “Neuronal circuitry generating locomotion is located in the thoracolumbar spinal cord. Spinal rhythm generating interneurons (INs) convert descending inputs into rhythmic outputs. … Continue reading →
Spinal implant helps three paralysed men walk again By Pallab Ghosh Science correspondent, BBC News “Three paralysed men, who were told they would spend the rest of their lives in a wheelchair, are able to walk again thanks to doctors … Continue reading →
This is just a quick note to alert you of yet another easy way you can support U2FP. Now through November 2, AmazonSmile is donating 5% (ten times the usual amount) to Unite 2 Fight Paralysis when you shop at this link: smile.amazon.com/ch/20-3528000. It's that simple - just buy what you were already planning to get on Amazon through the above link (or use it as an excuse to justify that impluse-buy you couldn't quite bring yourself to make).
Read about the neuroprosthetic advancement at MEDGADGETS: “Scientists at the École Polytechnique Fédérale de Lausanne (EPFL) in Switzerland have created a special device to be able to stimulate and record signals from and to peripheral nerve fibers on a specialty … Continue reading →
We did it! Last Wednesday, October 17th, at approximately 8:45pm EST the $1,000,000 Pennsylvania Spinal Cord Injury Research Bill (SB31/HB385) went to the floor of the PA House for a final vote and PASSED into Law!
I can't say it enough - Thank You! I'm incredibly grateful to:
- Our Sponsors. And especially our Title Sponsor, The Rick Hansen Institute - for helping to underwrite this year's Symposium and providing much needed resources to make Working 2 Walk accessible and affordable to the SCI Community.
- Our Presenters. Each of our scientific and advocacy speakers brought a unique perspective to the table, which in turn fueled our table discussions and broadened our ideas of what is ...
Neural Regeneration Research Journal Authors: Philippa Mary Warren, Amanda Phuong Tran, and Jerry Silver, Ph.D. “In our recently co-authored Physiological Reviews manuscript entitled “The biology of regeneration failure and success after spinal cord injury” (Tran et al., 2018b), we sought … Continue reading →
Thanks for reading, all of you who are following from Canada, the USA, the UK, Belgium, India, Italy, Ireland, Israel, Pakistan, and Russia. I hope you found something challenging and useful in these posts; the conference can be challenging, and these little posts barely get at the substance of what happens here, either in terms of... Continue Reading →
David is going through a quick recap of what has been presented since lunch. He says he’d like to open this by talking about funding, especially as it relates to talking about the broken system for paying for rehab. One of the small things we’ve done by way of persuading the government to spend money... Continue Reading →
Thanks, Matthew for the invitation to be here today. I’d like to remind you of the Power of One. We’re all here today because of Marilyn Smith. Her son Noah was injured in 2003, and her response to that is why we’re here. (Applause, amen.) Sarah, Luke, Kylie, James (he shows their pictures, along with... Continue Reading →
Acute Intermittent Hypoxia: A Scientific and Personal Odyssey Take home messages (do them first so we can follow along!) Acute intermittent hypoxia shows great promise to improve many motor functions in chronic sci. Everybody has a role in making this happen. I’m a physical activity guy who was looking for a dream job when I... Continue Reading →
I’ve tried to compress two topics into one talk … first I’m going to talk about training — and you see the small print “in animal models.” We’re starting with Rehab in Rats. Why study this? I want to understand what happens in the nervous system when it uses training to recover. We used to... Continue Reading →
Question: I was talking with one of the women in the ESTAND trial and she was showing me how she uses her phone app to trigger the device. Is this something that could be done w/respect to BB&S? It’s our vision that any of these approaches should come with a good technology that allows you... Continue Reading →
Matt tells a story about a legislative meeting he had during the effort to get funding through the Pennsylvania legislature. He’d just heard the good news that one of the subjects in the Krassioukov trials had recovered the ability to have an orgasm after almost six years post injury. Thinking it would be the sort... Continue Reading →
Matt: Here’s a story for you. U2FP used to have a board member with a C7 injury. His name was Dave, and he was a dedicated quad rugby player. He and I used to talk about how hard it was for him to get his rugby friends to care about research. The light came on... Continue Reading →
The bladder is a very complex system … We look at this (SCI research) as a sort of buffet; there’s lots of things that can help right now. I have patients coming in who think they want to wait for the stem cell treatment that will get them tap dancing, but from my perspective they’re... Continue Reading →
Question: Speaker is outlining a bunch work in this area that’s ongoing in Canada and asking for collaboration with researchers in the USA. Dennis: Fantastic. Question/comment: Kim Anderson herself says that there’s a new survey. It appears that bladder and bowel functionality does impact sexual function. Suggests to Neilsen that scientists can be asked to... Continue Reading →
Thanks for having me here. I’ve been asked to talk, but I’m here to listen. This is a brilliant conference, and we’ll be taking a lot of these lessons back to our own meetings. A lot of what we hear from you does go back to our meetings. I’m going to present some data from... Continue Reading →
Thank you for inviting me — this has been an amazing event. I enjoyed our table conversations yesterday. My background is in neuroscience and I worked on a bunch of technology before going to Neilsen. My goal today is to share some info about the foundation, and to give you some insight into what it’s... Continue Reading →
Matt: Good morning! Most of you came back! (He’s right. The room is just as full today as yesterday, which might be due the wise choice to have us start at 9 instead of 8 … the bar scene went on for a while last night.) Matt: I want to revisit something … it’s so... Continue Reading →
The man himself. He rolls himself up a very steep incline to get to the podium, jokes about how this wouldn’t meet the ADA specs. I’ve been on this journey for a little while, and ultimately I’m incredibly blown away by the evolution … looking back, you would never see a room like this 30... Continue Reading →
Lyn Jakeman will moderate again. This time she’s joined by Brian Kwon, Wolfram Tetzlaff, and Karim Fouad She starts by talking about how the scientific community — having studied regeneration for decades — is in a strange place relative to that focus. Lots of work, lots of time, lots of careers … and not much... Continue Reading →
He can’t hear the first question, blames it on Led Zeppelin in the summer of 1969 … person repeats it: What about improving myelin from dietary changes? (Apparently this is a thing) He says it’s a very good question that needs more study. This makes me slightly crazy. Improving myelin needs more study?! I get... Continue Reading →
Ah, a German accent … plus, a little mixup in the understanding of the program agenda. I thought I would be talking next to someone talking about cell transplant .. But no. The title of this talk is Locomotor Recovery Following Moderate or Severe Contusive SCI Does Not Require Oligodendrocyte Remyelination. (And that’s not just... Continue Reading →
For 40 years, we’ve been looking at interventions, most of which have failed. Do you have biomarkers for chronic injuries? That’s a hard question … (he says a lot of words that add up to) “We’re not doing very much in that area right now.” (missed the question sorry) What we want to do in... Continue Reading →
He’s a very well-spoken, able-bodied guy — comes across like a man who is used to speaking to people with money, tho’ I probably couldn’t say exactly what I mean by that. Self-assurance is part of it, along with the sense that everything he says has been very, very thoroughly thought through. He welcomes us... Continue Reading →
How do we build in time and money for researchers to do the next thing? We all know that their incentive is to just do more research. It’s what pays the bills. Change is very hard, and the research ecosystem is very big … but it’s coming. For researchers, the incentive is to do something... Continue Reading →
The Breadcrumb Path from Bench to Bedside Lyn is very appealing. That’s really the only word to describe this woman. She’s able-bodied and energetic, full of curiosity and good will. She smiles easily; also, when she’s focused on making a point, you realize that there’s a very clear mind at work. She describes her background:... Continue Reading →
We introduce ourselves. What we’ve been given is a set of questions. We’re asked to work our way through them, with a volunteer facilitator and a volunteer note-taker. Later the whole group plus the panel will talk about these discussions. One member starts by talking about her company that’s developing a full range of motion... Continue Reading →
Q and A for Megan Has epistim been shown to improve hand function? Yes! Look at Chet Moritz’s work. Congratulations for doing that replication study! You validated the work of the Louisville team, which was a giant step forward. (He’s taking a very long time to ask the following:) Why don’t we work on crawling?... Continue Reading →
Matt introduces her: Our next speaker is Dr. Megan Gill from the Mayo Clinic. A couple of weeks ago there was an explosion of press about her work, along with that of researchers from the Louisville lab. This is the epidural stimulation all your friends have been talking about. Matt’s reminder: If it’s not clear... Continue Reading →
David is a mild-mannered able-bodied person with a very calm and measured way of speaking. You can tell that he also has a wicked sense of humor. His talk is called Activity and Physical Therapy after Incomplete SCI in the Rat (Aside from me … okay, I like this because it’s about incomplete injuries and... Continue Reading →
Can you profile patients to see who will respond to this and who will not? There is no profile like that. We know that even in injuries classified as ASIA A — motor and sensory complete — there are surviving fibers. They’re just asleep. I understand the goal is to implant 100 people … so... Continue Reading →
He turns out to be a burly able-bodied guy with a distinct Russian accent. His talk is called Spinal Cord Neuromodulation for Restoration of Autonomic Cardiovascular Function in Individuals with Spinal Cord Injury How’s that for a mouthful? What he’s going to give us is an update from the ESTAND trial — for those who... Continue Reading →
Barry Munro wheels up to take the microphone. I’ve been injured for 31 years, and I’ve been on this journey for a long time. We all share a common journey together. I wanted to look back at where we’ve been as a community, about lessons learned, starting with what happened to me. August 1987, I... Continue Reading →
New this year: breakfast served on actual PLATES, at your seat, right where you’re going to listen to the speakers throughout the day! We’ve always had to go muddle through a buffet style continental spread, get the various plates and cups and utensils back to our tables, and then pick at it as fast as... Continue Reading →
So, Bruce and I left Seattle at 1:30 this afternoon, and a couple of hours later we were parking the car in Vancouver. We schlepped our stuff up to the hotel room, looked at each other and said, “Damn. Why do we ever fly anywhere? That was easy.” Of course the day did involve sharing... Continue Reading →
Dr. Francisco Benavides from Miami Project explains the neuroplasticity experiments taking place at Miami Project.
Without your calls and letters (including those from the Reeve Foundation and United Spinal that were sent in solidarity with our PA advocates) we wouldn't be here.
Now we're asking you to tell your own story. Without that continued show of support from the SCI Community, there's still a chance our bill could be sidelined by an amendment during the final vote.
Dr. Kendall Lee, neurosurgeon and director of Mayo Clinic’s Neural Engineering Laboratories, covers two topics – deep brain stimulation surgery and the latest update on spinal cord injury research (at 10:00 min) from the neurosurgeon’s perspective. Rehabilitation for spinal cord … Continue reading →
“This review summarizes different approaches to electrical stimulation of the spinal cord designed to restore motor function, with a brief discussion of their origins and the current understanding of their mechanisms of action.” Therapeutic Stimulation for Restoration of Function After … Continue reading →
Today is the day: the $1M SCI Research Bill our Pennsylvania advocates have worked tirelessly to advance (Senate Bill 31) is up for a vote in the House Human Services (HHS) committee this afternoon. It must pass out of the HHS committee in order to be put to a final vote on the House floor. Let’s make the best of the next few hours and push this legislation over one of the final hurdles. Please pick up the phone!
We've talked a lot about how we want the SCI Community to be in the driver's seat when it comes to conversations around curative therapies. It's why a central component of our C.A.N. initiative is crafting legislation that requires having the SCI Community at the decision-making table.
From the UCLA Newsroom “The David Geffen School of Medicine at UCLA has received a $3 million gift from The Louis and Harold Price Foundation to support the spinal cord work of Dr. Daniel Lu, associate professor of neurosurgery and … Continue reading →
We're entering the homestretch ahead of Working 2 Walk - just under 2 weeks left to register online. The excitement continues to build as the pieces fall into place: from our first-class line-up of presenters to our interactive agenda that will allow more time for critical engagement, to the formal and organic connections that are made within the SCI Community.
I’m weak minded and have bad genes. But let me back up. For those of you who are not aware, one of our initiatives here at U2FP is organizing a team of runners and wheelers in the Chicago Marathon every year. This year, I’m joining Team U2FP - as a participant - to raise funds in support of our work. If you’ve met me you’ll understand why I’ve been giving folks the opening disclaimer: I have the genes predisposed to raiding a 9th century Northern European village, wearing a bear skin ...
CAMBRIDGE, Mass.–(BUSINESS WIRE)–BioAxone BioSciences, Inc. announced today the receipt of a Fast-Track grant (R44 NS110290-01) from the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health, as part of the agency’s Small Business Innovation … Continue reading →
Unless you’ve been living off the grid AND under a proverbial rock, you’ve no doubt seen the multiple news reports regarding the ongoing Epidural Stimulation studies at the University of Louisville and the Mayo Clinic. The reports are based on these articles in the New England Journal of Medicine & Nature (the latter includes Megan Gill as one of its authors, a presenter at this year's Working 2 Walk Symposium). It's encouraging news, and has certainly captured the media spotlight.
ROCHESTER, Minn. — Spinal cord stimulation and physical therapy have helped a man paralyzed since 2013 regain his ability to stand and walk with assistance. The results, achieved in a research collaboration between Mayo Clinic and UCLA, are reported in Nature … Continue reading →
Here is today’s latest information in a brief article and video on the spinal cord injury trial testing Epi Stim Standing and Stepping in the ClinicalTrials.gov number, NCT02339233. Recovery of Over-Ground Walking after Chronic Motor Complete Spinal Cord Injury at the … Continue reading →
The Canadian/American Spinal Research Organization (CSRO/ASRO) is a charitable organization (charitable registration # 11915 9515 RR0001) dedicated to the funding of targeted research to maximize functional recovery and cure paralysis caused by spinal cord injury. CSRO envisions a world without paralysis caused by spinal cord injury.
Working 2 Walk in Vancouver is now just a month away - so if you’ve been thinking about it, now's the time to register. As I've mentioned previously (Context, Strategy, Voice), there looks to be a combination of very provocative presentations and conversations lined up.
Good news on the legislative front in Ohio: we now have a Bill drafted and an author in the Ohio legislature. The Bill has not been introduced or been made public yet (and frankly, it needs a little tweaking), but its a great start.
The goal of the ‘SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research’ conference is to initiate discussion across the SCI research community to launch a new decade of research that disrupts traditional barriers and brings about collaborative … Continue reading →
There’s a great little story within the film, Shawshank Redemption. The main character, Andy Dufresne - who is serving time for a murder he didn’t commit - decides he’s going to try to open a prison library. He starts mailing letters to the state legislature to ask for books for the library. The key scene unfolds as follows ...
This year's Visionary Sponsor - and a long-time Working 2 Walk supporter - is the Craig H. Neilsen Foundation. We are extremely grateful for the Nielsen Foundation’s support for our Symposium and especially their support for our Travel Grant Scholarships.
There's still time to save on this year's Working 2 Walk Science & Advocacy Symposium - but only if you register by this Friday, September 7th.
EPFL (Ecole polytechnique fédérale de Lausanne) in Switzerland and UCLA (University of California in Los Angeles, California) have collaborated in making severed nerve fibers regenerate across a complete SCI to form a bridge in rodents. Their three part recipe for … Continue reading →
When I first moved to Minneapolis from Philadelphia (which feels like a lifetime ago), I worked evenings in a hospital while still going to school during the day ...
I recently read a wonderful paper published in Nature addressing a stem cell experiment for spinal cord injury. This paper is very scientifically detailed, but they show the need for having the right age and origin of stem cell to … Continue reading →
A non-invasive method to restore bladder function after a spinal cord injury continues to show progress in the Dr. Daniel Lu at UCLA. This experiment showed positive results in 5 people eliminating the need for catheters for up to 4 … Continue reading →
As part of our on-going effort to introduce you to our top-tier list of speakers this year, we're continuing to feature CureCast interviews with scientists and advocates who will present at Working 2 Walk this fall. Check out our latest conversation with Dr. Dennis Bourbeau.
The Working 2 Walk Science & Advocacy Symposium prides itself on putting the SCI Community at the center of the conversation about curative therapies. And it's one of the reasons our conference has one of the highest - if not the highest - numbers of attendees with a Spinal Cord Injury than other conferences of this kind.
One of the important strategies that labs have been focusing on for spinal cord injury has been how to best deal with CSPG (chondroitin sulfate proteoglycans) commonly known as the scar that builds up at the site of injury (lesion) … Continue reading →
Way back in my previous life as a manager in an Emergency Department, I used to attend ER and Healthcare conferences on a fairly regular basis. It didn’t take too many conferences to realize that they’re all pretty much the same. The colors, the columns and the chandeliers are different (though not that much, really) from hotel to hotel, but the conferences all felt similar.
We’ve been talking for a few years about how we don’t want Working 2 Walk to be like that, or end up like that: a rotating cast of characters having the same conversations over and over, peppered by one or two flashy presentations. It's one thing to have a conference circuit that’s peddling the newest designs in stretchers and care delivery, or ‘secrets to reducing your Length of Stay' like I used to sit through back then. It's quite another to be doing this in service of expediting Cures for SCI.
NervGen & Dr. Jerry Silver
Please join us in congratulating Dr. Jerry Silver and Dr. Bradley Lang from Case Western Reserve University and the team at NervGen (https://www.nervgenpharma.com/) for the steps taken to bring a potential treatment forward for chronic Spinal Cord Injury, as well as other injuries
U2FP’s Scientific Advisory Board has assisted foundations who wish to fund promising and relevant research for the last several years. Thanks to Donna Sullivan’s leadership as our Special Projects Director, our Scientific Advisory Board reviewers, and the other key organizations that U2FP has collaborated with in the funding of Dr. Silver’s work:
• The Hong Kong SCI Fund
• The United Paralysis Foundation.
As difficult as it is for the scientific enterprise to find discoveries such as this, it may
be equally difficult to navigate the obstacles and challenges inherent to bringing
those discoveries to a relevant treatment for SCI. So, we will continue to keep you
abreast of that progress and continue to look for ways that our community can help.
W2W Agenda is Up | CureCast Interview with Dr. Andrei Krossioukov
This year’s Working 2 Walk Science & Advocacy Symposium continues to take shape. We’ve just posted the first iteration of our Agenda so you can see what’s happening and when. Please know that we’ll continue to update the Agenda in the coming weeks as the presentation titles are finalized.
And as part of our on-going effort to introduce you to our top-tier list of speakers this year, we’re continuing to feature CureCast interviews with scientists and advocates who will present at Working 2 Walk this fall. Check out our latest conversation with Dr. Andrei Krossioukov, who talks about the potential that spinal stimulation holds for autonomic funtions for chronic spinal cord injury: bowel, bladder, seal function, blood pressure regulation. Check it out — then drop your thoughts to us at email@example.com
The Rick Hansen Institute is a Vancouver-based not-for-profit organization that drives innovation in spinal cord injury research and care. Learn More
Our publicity efforts, web traffic, and social media conversations will increase steadily in the next couple of months; be a part of the buzz as an official Working 2 Walk Sponsor. Join the Rick Hansen Institute and our other valued sponsors of this year's Symposium. Sponsor the Symposium
For those following SCI research in the electrical stimulation field, this open access article in Nature Communications is worth a read. Here, the Gregoire Courtine lab describes the concept and project where brain-controlled modulation coupled with constant stimulation during gait … Continue reading →
See the Full Article LINK at Neuroscience Research Australia: Researchers from Neuroscience Research Australia (NeuRA), The University of Sydney, and HammondCare have found surviving sensory nerve connections in areas of no sensation in 50% of people living with complete thoracic … Continue reading →
Working 2 Walk Teaser: Dr. Karim Fouad on pericytes, controlled inflammation & how to improve translation
Our team is hard at work on a dynamic and exciting agenda for Working 2 Walk in Vancouver, Canada this year - much of which I will be keeping you current on via these newsletters, so stay tuned. Believe it or not the Working 2 Walk Symposium (October 19-20) is less than three months away!
And don't worry - we are planning to launch online registration for Working 2 Walk this Friday, July 27th, so keep an eye out for another newsletter announcement then.
One of the new things we are doing is featuring interviews on the podcast with some of the scientists and advocates who will be speaking at the Symposium. We thought this might be a good opportunity for you to familiarize yourself with those individuals and hear a little bit about their work ahead of this year's conference.
Please check out this great conversational interview Kate and Matthew had with Dr. Karim Fouad.
Dr. Fouad 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 - then drop your thoughts to us at firstname.lastname@example.org
And if you haven't listened to it before, check out our interview from a couple months ago with Dr. David Magnuson who will also be presenting at Working 2 Walk in Vancouver this October.
Kate and Matthew have a great conversation with Dr. Magnuson about his research interests - which range from fashioning miniature wheelchairs for rodents to testing the effects of shallow water walking. His work poses some provocative questions for rehab science and functional restoration. Have a listen, and then drop us a note (email@example.com) with your feedback.
Special thanks to the Rick Hansen Institute, this year's Title Sponsor! This is the first time Working 2 Walk has been held outside the United States, and we see it as the next chapter in our ever-expanding mission to unite the SCI Community around the world.
As always, don't forget to Fuel The Journey. We've got a lot of ground to cover, and we can't do it without you!
Get these updates sent right to your inbox — sign up here!
Read the Full Article at eLife Sciences The vagus nerve reports on the state of many of the organs in our body, including the heart, the lungs and the gut, and it relays this information to various neural control networks … Continue reading →
Read the Full Article at eLife Sciences The vagus nerve reports on the state of many of the organs in our body, including the heart, the lungs and the gut, and it relays this information to various neural control networks … Continue reading →
Read this Full Story at Science Digest HERE Most people with spinal cord injury are paralyzed from the injury site down, even when the cord isn’t completely severed. Why don’t the spared portions of the spinal cord keep working? Researchers … Continue reading →
Read this Full Story at Science Digest HERE Most people with spinal cord injury are paralyzed from the injury site down, even when the cord isn’t completely severed. Why don’t the spared portions of the spinal cord keep working? Researchers … Continue reading →
Read the Full Article at Globe Newswire. VANCOUVER, British Columbia, July 18, 2018 (GLOBE NEWSWIRE) — NervGen Pharma Corp. (“NervGen”), in Vancouver, and Case Western Reserve University (“Case Western Reserve”) in Cleveland have entered into an exclusive worldwide licensing agreement to research, develop and … Continue reading →
NeuroRecovery Technologies specializes in Spinal Cord Stimulation for spinal cord injury. Nick Terrafranca, CEO, describes the technology and an update on the progress of their research.
The molecule inhibits adult axon regeneration, but appears to stimulate young neurons by Scott LaFee Recovery after severe spinal cord injury is notoriously fraught, with permanent paralysis often the result. In recent years, researchers have increasingly turned to stem cell-based … Continue reading →
Problems are solved by a team, a community, a movement of people. That means US. So resist any thoughts you may have or messaging you may hear (especially if it comes from me) that puts any hero up on pedestal. Because what we need are pedestals big enough for all of US to get us to Cures ...
Most studies on microtubules in the nervous system have focused on the dynamic properties of the microtubules, with stabilization by taxol and related drugs being proposed as a therapeutic for nerve injury. However, while initial indications were hopeful, more recent … Continue reading →
Most studies on microtubules in the nervous system have focused on the dynamic properties of the microtubules, with stabilization by taxol and related drugs being proposed as a therapeutic for nerve injury. However, while initial indications were hopeful, more recent … Continue reading →
Working 2 Walk - Dr. Magnuson Teaser
Working 2 Walk 2018 continues to take shape.
One of the speakers at this year’s Symposium will be Dr. David Magnuson - Friends for Michael Endowed Professor, Departments of Neurological Surgery, Anatomical Sciences & Neurobiology, and Biomedical Engineering at the University of Louisville in Kentucky. To get a flavor for his research and focus, check out the podcast conversation Kate Willette and I had with David a few months back.
We will be posting information on this year's Working 2 Walk Speakers over the next few months. This is meant to prepare you for more fruitful interactions and engagement at the Symposium. Please send your questions and/or comments to firstname.lastname@example.org. We’d love to hear from you and your feedback will help guide some of the conversations we are planning for Working 2 Walk.
Check out the Working 2 Walk home page here. Thanks to our Title Sponsor the Rick Hansen Institute and our other valued sponsors: The Craig H. Nielsen Foundation , Global Technologies, The Canadian Spinal Research Organization, Kennedy Krieger Institute, The Christopher and Dana Reeve Foundation, DP Clinical and Push To Walk.
There's still time! If your organization is interested in becoming a sponsor for this year’s conference please send an email to email@example.com. Get these updates sent right to your inbox — sign up here!
Dr. Aharon Lev-Tov, Chair of Medical Neurobiology, discusses his department, research into spinal cord injury, and Canadian collaborations.
T. George Hornby
Rehabilitation Institute of Chicago
Department of Physical Therapy
University of Illinois at Chicago
Authors: Herrity AN1,2, Williams CS3, Angeli CA1,4, Harkema SJ1,2,4, Hubscher CH5,6 Deficits in urologic function after spinal cord injury (SCI) manifest both as a failure to store and empty, greatly impacting daily life. While current management strategies are necessary for … Continue reading →
Read about the objective to investigate the efficacy of spinal cord epidural stimulation (scES) as a promising therapy to improve bladder control after SCI.
Researchers at King’s have shown that rats with spinal cord injuries can re-learn skilled hand movements after being treated with a gene therapy that could be switched on and off using a common antibiotic. Researchers at King’s College London and … Continue reading →
Scientists say they have taken a significant step towards the goal of giving paralysed people control of their hands again.
Jan-Eric Ahlfors, CEO and CSO of Fortuna, presented at the Fourth International Vatican Conference “Unite to Cure”.
Marquette University professor Murray Blackmore was awarded a $1.6 million grant from the National Institutes of Health to continue his research of spinal cord injury and paralysis.
Great news from the filmmakers of the Cure Map documentary & and progress on the front-lines of our fight for research funding through the Pennsylvania Legislature.
See all the great ways we're building capacity with our Cure Advocacy Network initiative.
Dr. Ida Fox talks “Improving Upper Extremity Function in Cervical SCI” in her Working 2 Walk video from last October; while Dr. David Magnuson discusses Matthew & Kate on U2FP's CureCast podcast.
We were saddened to learn of the recent passing of Dr. Jean de Vellis, a founding member of our Scientific Advisory Board (SAB). More than 5 years ago, Dr. de Vellis helped U2FP assemble a review board of scientists that would help smaller foundations vet their funding decisions.
Two worlds come together in this personal reflection about what it will take to cure paralysis.
We’ve just released Megan Moynahan’s video from this past year’s Working 2 Walk in Miami. We also have a new podcast interview up with the creators of the documentary film, The Cure Map. Check it out!