| THIS MONTH: SCI Research Update | | |
| We're
excited to turn the Health and Wellness newsletter over to its first
guest editor, Matthew Rodreick, the executive director at Unite 2 Fight Paralysis
(U2FP) and father to a son with SCI. U2FP is a grassroots advocacy
organization working to unite the SCI community and accelerate therapies
that restore function after SCI. | |
 |
| A
growing number of clinics are combining spinal stimulation with
activity-based therapy to help restore function for people with spinal
cord injuries. | |
Recently,
I demolished my son’s wheelchair ramp and took it to the city dump. I
didn’t tear it down because it's no longer needed. Eighteen years after
he sustained a C5 spinal cord injury, my son still uses a wheelchair.
Instead, wear and weather were turning the ramp back into the dirt from
which it came, and it was no longer safe. Throwing the pieces into the
scrap pile, I couldn’t help but reflect.
Shortly after my son’s SCI, I committed myself to advancing research
that could help him recover as much function as possible. It was work
that I’d hoped would render his ramp obsolete or, at the very least, not
essential. But here I am building a new one that is still quite
essential.
When the editors at New Mobility asked me
to write a broad update about the state of SCI research, I thought
about all the advances that have been made since I built that first
ramp, but at the same time, how far we are from a world where ramps are
obsolete.
This newsletter will be about that exciting, ambiguous in-between.
Before we get into the specifics, a few things to note: First, I don’t
want to add any more hyperbole to what advances are “just around the
corner” or, dare I say, “in five years.” Second, I’m writing about
things that provide meaningful promise for people who have been living
with spinal cord injuries, not just the newly injured. Third, I’m not
going to name any companies or scientists. Our community is often asked
to "pick a winner." My loyalty is to restored function, not to who
delivers it — because it always comes from a collective effort.
| |
Help us better understand the realities of sitting
Our previous survey results helped guide solutions around the often
overlooked experiences of sitting. No matter how long you sit, your
input matters. Take a few minutes to contribute to ongoing seating and
sitting research by completing the survey. | |
| STIMULATION AND BCI SHOW REAL RESULTS | |
| Things
have changed since my son’s wheelchair ramp was first built. Back then,
spinal stimulation — a strategy to electrically stimulate areas of the
spinal cord either through the skin or surgically implanted on top of
the cord — was producing some effect in individuals, but researchers
didn’t yet understand how or why. Now it’s an accepted therapy you can
pair with rehab both in the clinic and at home. | |
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| Transcutaneous stimulation is allowing some quads to recover hand function. | |
And
some folks are seeing functional recovery that was not previously
possible. Skin surface stimulation — also known as transcutaneous
stimulation — is letting some quads recover hand function like grasp and dexterity. Others who pursued implanted stimulators — also known as epidural stimulators
— are seeing reduction in neuropathic pain, spasticity and in some
cases improved sexual function. This is happening now, not five years
from now.
Clinicians can program both surface stimulators and implanted
stimulators to address the variability of each person’s injury and the
desired functional outcome. This is what makes stimulation such an
exciting, but complicated theory – it's not one setting fits all. We’re
still in the early days, so the challenge will be defining the clinical
protocols and the time required for gaining meaningful function. It’s
also not yet clear who will benefit the most and what the ceiling for
recovery will be.
Researchers and emerging companies are also using stimulation to target very specific functions like breathing, bowel, bladder and sexual function
— either stimulating the cord at the levels responsible for these
functions or implanting devices that stimulate the organs directly. | |
 |
| Brain
computer interface allows a user to control a computer or other
electronic devices using only their thoughts. Photo courtesy of
Neuralink. | |
| A cousin to spinal stimulation is brain computer interface.
This field is also expanding quickly with a growing number of
approaches to restore upper extremity function, sensation and,
increasingly, efforts to pair it with spinal stimulation to route
signals around the damage. | |
DRUGS
Drug-based interventions are also showing positive effects in chronic
injuries. They are moving to late-stage clinical trials and may soon
gain regulatory approval as treatments. As with stimulation, the same
questions remain. Who will benefit the most? How long will recovery
take? And what is the ceiling for functional return?
So far these types of treatments would fall into the category of
pro-regenerative, not yet regenerative. Pro-regenerative refers to an
intervention that creates a more permissive environment for
regeneration. These approaches are trying to reduce the size of the scar or lesion after SCI,
enhance connectivity in the spared tissue of the spinal cord or reduce
inflammation in the spinal cord in the initial days and weeks after
injury. When combined with another intervention such as rehabilitation
or activity-based training/therapy, these approaches could lead to
functional return for people living with SCI.
Regenerative refers to a therapy like stem cells or gene cocktails that
regenerate lost or damaged tissue and inherently grow the connectivity
required for functional recovery. Stem cells have received lots of attention
but have yet to work well enough to break into treatment paradigms.
Cell type, origin, purity, safety, survivability and functional
connectivity have all been barriers to their success. These strategies
continue to evolve, addressing those barriers with scaffolds, growth
factors, genes and possible pairings with the innovations above.
Studies using psilocybin and other naturally occurring molecules
are looking to harness the neuroplastic potential hidden behind
hallucinatory experiences. The notion that changing your mind changes
your body could open an array of treatments to compete with conventional
drugs. | |
GET INVOLVED
All of the above raises a question that has grown more pervasive: How do
we pair these strategies into smart combinations so people regain more
function? Combinations complicate translation in standardized treatments
— knowing what to combine and how — and regulators typically approve
single therapies, not pairings. But since most scientists believe
combinations will provide the most meaningful recovery for SCI, this is
where we need the effort to go.
Which leads me to the most critical thing I have yet to mention: You.
Our organization and many others are committed to influencing this whole
research enterprise with our needs, goals and expectations. Many in the
SCI community view research as a "spectator sport" or have no idea how
to be anything but a spectator. The trouble is that research moves on
with or without input from the people who have the most at stake. That’s
on us, not anyone else. We must make our voices heard and hold public
dollars, companies, regulators, healthcare and advocacy organizations
accountable to what we want and need.
| |
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| For
years, much of the focus for SCI research was to get people walking
again, even though many people with paralysis consider other priorities
like bowel and bladder and sexual function to be more important.
Credit: EPFL Hillary Sanctuary | |
And
we have to educate scientists as well. Scientists are experts in their
fields, but who’s the expert at living with an SCI? That would be you.
Too often researchers don’t fully consult the SCI community
about risk/benefit, the outcomes that matter to us and who treatments
will — and won't — work for. By the time a therapy comes to humans for
testing, the path has already been set. So please do not read this,
close the page, and consider your work done. You can:
This has been a broad review, and I’m sure some of you recognize things I
missed. If you have questions, criticism or suggestions, please reach out.
U2FP is leading an effort with all of the national SCI organizations to
develop a formal National Plan for SCI modeled after national plans for
ALS, Alzheimer's and stroke. Enacted with congressional help, it would
increase funding for research, quality of life efforts and access across
the board. Stay tuned.
My son recently shared a hard epiphany that he will always be grieving
what SCI has taken from him as he moves and matures through life, all
the while embracing what that life has given him.
That may be one broad definition of hope and what hope demands from any
of us. We hold ourselves and the world as it is in the same hand with
ourselves and the world we hope to see. That means examining the systems
we inhabit and changing the ones that don't serve us. Our collective
role is to bring that to the scientists, clinicians, companies,
foundations and policy makers to move us all forward. We can’t do it
unless we’re all in it together. | | |
