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Dear Jo,
It’s been a busy season here at Unite 2 Fight Paralysis. Collaborating with our Title Sponsor, The Miami Project to Cure Paralysis, we’ve begun planning and preparing for the 2017 Working 2 Walk Symposium in Miami. We’ve also been busy recording U2FP’s first ever podcast, SCI Curecast. The podcast is built around Kate Willette's book, Don't Call It a Miracle, is hosted by Kate and myself, and features a variety of guests to spice up the conversations. The first 3 episodes are now available with more to come – find them on our website or iTunes.
| Most importantly for me, the past few weeks have seen the first fruits of a culmination of a year and a half of organizing and preparation. At the 2015 Working 2 Walk conference I invited anyone within earshot to join U2FP's Cure Advocacy Network, in order to answer this simple question: What do I do now? Several people responded to the invite, a few dropped off, and several more joined along the way. Nine of those budding advocates have led the effort to pass a legislative bill in Pennsylvania to fund spinal cord injury research in pursuit of functional improvement after paralysis. |
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For those first 17 months we met monthly via Skype and ultimately put together a strategy to get a bill introduced to the PA legislature. Step 1 is complete. We have a bill moving through the legislature as I write. A couple weeks ago I traveled to PA (thanks to travel support from the Canadian Spinal Research Organization) to speak at three Town Hall meetings. They were organized to build the relationships and awareness necessary to mobilize calls, visits and emails amongst our SCI community members, friends and family, as well as research scientists and healthcare professionals. We spoke to over 100 people, all of whom were very engaged with the effort.
The two days of Town Hall meetings ended with a Press Conference at the Capitol in Harrisburg where our bill was announced to legislators. We were recognized and introduced on the House floor and procured several more co-sponsors as a result. The bill hasn’t passed yet but our sponsor, Sen. Mario Cavello, is feeling pretty confident that we will get it passed right out of the gate. It was an exciting and tiring week, but extremely fruitful to engage so many people who want to see cures for paralysis and are willing to do some work to get there.
And in case you’re wondering about that last statement, I need to tell you that I firmly believe it’s essential to pursue the relationships that form across the many stakeholder groups. Getting more money to the research is merely a doorway to forming the kinds of functioning relationships necessary to move the dial. And I believe that’s exactly what we are doing.
Special thanks to our advocates in PA: David Zacks, Leon Ford, Kate and Jake Chalfin, Melissa and Alex Pitts, Ben Stear, Mike Pelicano and Kenneth Ryno.
Thanks for your support. Please consider making a donation to help fund the important work we are doing.
Matthew Rodreick, Advocacy Director
Unite 2 Fight Paralysis matthewrodreick@u2fp.org
Unite 2 Fight Paralysis 3078 Eliot Dr Hood River OR 97031 u2fp.org
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