Everybody’s experience of a Spinal Cord Injury within our community is different. But I expect we all share many of the same stops, hurdles, pitfalls and choices along the way.
When my son was first injured back in 2008, I remember cycling through a series of feelings from shock to fear to love to grief to anger to resolve and back around again.
And for me, each of those emotional transitions was imbued with a twisted sort of choice: how do I use the energy from this emotional roller coaster constructively to get my son the functional recovery he deserves?
This is why I gravitated to Unite 2 Fight Paralysis back in 2011, when I first attended Working 2 Walk. Here was an organization shaped by folks who chose to put the reality of an SCI front and center as a witness, an educational tool and a prodding iron to quicken the research enterprise.
U2FP’s founders had the foresight and vision to bring those who research the injury into close proximity with those who live with it. Their belief - one that we have carried forward and tried to expand on - is that getting all the stakeholders together with the SCI Community can deliver important critical outcomes for those with a chronic injury.
Consider what this approach achieved at this year’s Working 2 Walk Symposium:
- Pre-clinical researchers Nick Jeffrey, Candace Floyd and Molly Shoichet realized during the Symposium that there was an opportunity to use each other's findings and methods in their respective work, and are now planning new ways to collaborate together
- Industry leader and Axonis CEO & Co-founder Joanna Stanicka realized a new opportunity for collaboration with Pre-clinical researcher Nick Jeffery
- The Artist Interludes reminded everyone of the powerful resilience, creativity, beauty and passion that exists within our SCI Community, deepening the resolve from which we all work towards curative interventions
Consider what this approach has achieved in our Cure Advocacy Network initiative:
- We’ve added $18.8 million to SCI research funding in the last 5 years by supporting, training and empowering our SCI Community to pass targeted state-level legislation
- More importantly, due to our community members participation at the decision-making table, those legislative initiatives have funded 6 clinical research studies/trials (so far) that have delivered innovative treatments to over 50 individuals with an SCI…the majority of whom have had various degrees of restorative benefit
- Our momentum keeps growing, as we’ve introduced legislation in Wisconsin and made more progress towards introducing Bills in Texas and Colorado
Finally, consider the achievements from a newer initiative you likely haven’t heard of - our Work Group initiative:
- Our Activity Based Therapy/Exercise Work Group has partnered with Dr. Leslie Morse’s team at the University of Minnesota to rigorously research the effects of exercise in the SCI population
- Our Neuromodulation Work Group has developed a survey for leaders in the field to form a consensus around what they are measuring, how they are measuring it and who they are measuring in human studies. Our hope is that this will lead to a more coherent and comparable data set to move the field forward
- Our Translational Work Group is composed of a diverse group of scientists, clinicians and SCI organizations exploring the challenges associated with translating discoveries to human relevance, making recommendations for how we move discoveries through the pipeline, and creating platforms for moving them to commercialization
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.
Now we’re asking you to make a choice. Please support our work with a year-end donation. Our initiatives can only go as far as our resources allow, and those resources come from you.
You - the SCI Community and all those invested in advancing curative treatments - are the ones fueling this journey. As always we need your support to fulfill the mission we all share: to find curative interventions for chronic spinal cord injury.
Matthew Rodreick, Executive Director
PS - We're also gearing up for #GivingTuesday on December 1st - and you can help us out by becoming a monthly donor, or making a year-end gift - both of which support our work to bring curative interventions to the SCI Community as quickly and efficiently as possible!