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The baffling decision to cut research on spinal cord injuries after so much progress • Minnesota Reformer [1]

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Date: 2025-07-22

I like to make noise.

It’s a family disposition likely amplified by being born and raised in Philadelphia. But over the past 15 years my propensity for making noise has become a mission after my son, Gabriel suffered a cervical spinal cord injury, or SCI. His injury left him with quadriplegia, the loss of movement and sensation over about 75% of his body from the chest down. And in spite of years of aggressive rehab his injury is permanent.

So I’ve become a noisy advocate for researching meaningful treatments for SCI to alter that permanence.

It started with leading the effort to pass a bill in Minnesota that created a $6 million research grant program for SCI and traumatic brain injury, or TBI. We designed this program to give us noisy folk in the SCI community a voice in deciding what research matters to our community and providing the incentives to move discoveries to human unmet need.

Since then, I took over the leadership of Unite 2 Fight Paralysis, a national SCI advocacy organization. We’ve passed three more bills modeled after the Minnesota bill in Washington State, Ohio and Pennslyvania. These bills have delivered over $40 million to this area of research, following the model we began in Minnesota. We are currently working to pass another $5 million program in Wisconsin because it’s working like we thought it would.

We’ve funded multiple clinical trials — testing scientific discoveries in humans — and we’ve seen over 200 people living with SCI return lost functions like movement, bladder, bowel, sexual function and a host of other complications that come from this devastating injury.

After all of this success, we woke up to the news a few months ago that the current administration, with the help of Congress, has eliminated $40 million from federally funded SCI research for this year alone. And we are expecting further cuts that will amount to many millions more and a devastating loss of scientific momentum.

What we did not expect were the trickle down effects here at the Legislature.

Minnesota lawmakers recommended gutting our state program from $6 million to $1 million. They offered talking points with no relevance to the efficacy and economic impact of our successful program. In the words of one legislator in the higher education committee: “We spend too much.” I responded in public testimony that you are not spending — you are investing in the future for all Minnesotans, whether that’s in the form of grants for colleges and universities or in advancing treatments for people living with devastating injuries like SCI.

For now, we have preserved our program at $5 million because we made some noise.

Now we are working to build a choir of noisemakers. In the aftermath of the first cuts by the Trump administration we organized a working group made up of all the national SCI advocacy organizations to strategize, meet with congressional members, announce various calls to action and so on. We’ve got a lot of singing to do and a long fight ahead of us. But we are also a 501(c)3 nonprofit which cannot find large granting agencies to fund this kind of work. We rely on private donors, from our own community, many of whom have been injured both physically and economically.

I’m not a golfer or a black tie gala type, I’m a noise maker. So we thought why not organize a night dedicated to noise making, but this time with music. My son (who performs under the moniker, Freaque) and I (with band Zoë Says Go) are both musicians, and we organized and performed a benefit show, “Rock To Restore Research” at The Cedar (another non-profit) last month.

It was a lovely, vibey evening thanks to Tina Sclieske (of Tina and The B Sides), her sister Laura and virtuosic friend Jeremy Ylvisaker. Freaque and funky friends were extraordinary. Imagine Tom Waits and Pino Palladino playing in a circus tent on the edge of purgatory to draw the audience through and out of the dark. In between the music came some important words from SCI research scientist Murray Blackmore from Marquette University and Cole Sydnor, an IG influencer (Roll With Cole) with a SCI telling their stories.

SCI research may not be your cause, but who doesn’t like to make a little noise whether joyful or in protest? And if you’re in any way discomforted by cuts to science, health care, and education to pay for tax cuts for the uber wealthy in this country, understand we are all fighting for the same things.

It’s only when we fight together that we can manifest transformative change. If you want to follow along or support our work you can find us at u2fp.org. We’ll be back next year for another noise-making effort.

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[1] Url: https://minnesotareformer.com/2025/07/22/the-baffling-decision-to-cut-research-on-spinal-cord-injuries-after-so-much-progress/

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