Death Valley Days: W2W 2016

Posted by Sam Maddox in Research News on November 02, 2016 # Research, Events

Dispatch from Working 2 Walk. This year it was in Minneapolis. If you want a breezy easy capsule of the annual gathering of the “cure warriors,” start with Kate Willette’s blog, scribed in furious real time over the two-day meeting. (Kudos to Kate, named the 2016 Cure Warrior of the Year).

Matthew Rodreick opened the conference with a pioneer’s view of crossing Death Valley in a covered wagon. I’ll explain, but first, this guy. Everybody knows him here, the local yokel with the gnarly hair, upholding the “archetypal Minneapolis hippie aesthetic,” as a news reporter once put it.

Matt is an SCI dad. His son Gabe was paralyzed at C5/6 in 2008, and as it often happens with SCI and families, dad was pretty badly wounded too. He and Gabe set out on a major two-year cure safari, taking them for months at a time to Project Walk, first in California, and then in Kansas City. They traveled to India – twice – to see Geeta Shroff, the super sketchy stem cell slinger. Matt is not so eager to admit the stem cell tourism detour, but he does not deny a certain degree of desperation of those earlier years.

Matt started growing his hair when junior got hurt. He vowed not to cut it until there was a treatment. It’s obviously been a long time since he leaned in toward the scissors, what with the big crop of coiled up dreadlocks he’s sporting. That’s sort of his brand now. The dude with the dreads. Matt confessed to W2W that he may be cutting them off soon, not because there’s a cure on the horizon, but because, well, Gabe doesn’t care, and the hairdo doesn’t always make for a good first impression, which has become more of an issue for a guy who has become a public face for making spinal cord injury a more urgent issue.

A slight digression: Unite 2 Fight Paralysis (U2FP), “the voice of the cure,” was born of pain and frustration by three moms whose boys were spinal cord injured. From 2005-2009 U2FP committed itself to mobilizing advocates from around the country to work for passage of the Christopher & Dana Reeve Paralysis Act. CDRPA would have added money and sharpened focus on SCI research at the NIH. The history of this bill, which was introduced in 2002 by Sen. Tom Harkin, owes much to the advocacy Michael Manganiello and Tricia Brooks. They ran the D.C. office for the Reeve Foundation until leaving in 2006. At that time, Manganiello started his own strategy consulting company and continues to engage actively with Reeve on matters of SCI advocacy.

U2FP organized its first W2W meeting in 2006, at the U.S. Capitol, with a heavy focus on advocacy; Harkin addressed the attendees, as did then-Senators John Kerry and Hillary Clinton. Susan Sarandon was there and made remarks, which didn’t hurt media outreach. Powered-up and motivated, the cure cadre made office visits to their Congressional delegates to pitch CDRPA. The effort took a couple more years to sink in, but eventually CDRPA got passed and was signed into law by President Obama in 2009 (tucked into a huge public land bill). Alas, the legislation was never funded; CDRPA died on the vine.

Back to Matt, who came into the picture too late to be soured by the politics of CDRPA: He is now the Advocacy Director for U2FP. His talk at the recent W2W was a metaphor for the journey he and his son have been on, about the lessons learned, and about how others who might follow along the cure trail need to be smart, focused and organized. The title of his remarks was “NASCAR and the Conestoga Wagon Train.”

Matt’s point, and I’m not doing it much justice, was that for a long time people seeking therapies for spinal cord injury ventured like 49ers into unmapped wilds hoping to reach the mythic hills of cure gold. The wagons, he explained, weren’t really owned by the passengers – they were sponsored, or branded, as it were, just like a race car. Each wagon may have represented a particular scientist (look, the Wise Young wagon!) or a particular science story (the Ch’ase wagon, or the epidural stim wagon), or even a particular sponsor/brand (the Reeve wagon, the Miami Project wagon, etc.) The wagons were all headed toward Death Valley and nobody had a map or much of a plan to move an idea through a clinical trial to make a commercial therapy.

So the idea is, let’s not focus on individual wagons but on the whole bunch of wagons, and on building a road and a few way stations so they can all safely cross the valley of doom. That was the general idea behind the CDRPA, but it brings us to the real point: Matt got it done in Minnesota. He forged a coalition of consumers, health care providers, academics, philanthropists, and legislators to craft a bill that won unanimous support in the Minnesota statehouse. The MN SCI/TBI Research Grant Program sets aside funds for spinal cord and brain injury research. (It was first labeled the Jablonski/Rodreick spinal cord and traumatic brain injury grant program, after Gabe and his dad, and for Jack Jablonski and his family – Jack was injured in a high school hockey game in 2011).

The Minnesota law doesn’t provide a ton of money now, 500 grand, but there’s a lot of upside – as Matt said, it isn’t just the money, it’s the relationships, community building and support of infrastructure that are important. He brought his key lawmakers to the W2W meeting, and they all praised him for being dogged and impassioned, for making this a human story. Matt said the Minnesota model is being used to line up SCI research money in Pennsylvania and Washington state.

More from W2W in subsequent blogs, including a lot of talk about spinal cord stimulation and two projects funded by Matt’s Minnesota money.