Grief is a hard thing. Unfortunately, it is something with which we in the spinal cord injury (SCI) community are intimately familiar.
Years ago I remember hearing someone say that grief is simply love that you don’t know what to do with or where to put: love for what was lost, love for what you can’t have or love for what was taken from you.
I’d extend this line of thinking even further. For many of us, this love-sprung-from-grief transforms itself into a kind of energy that seeks to transform the status quo - in our case, spinal cord injury.
For some of us, the roots of our grief are inextricably wound up in the urgency to realize curative therapies. But grief is not enough and often not the best guide. We must grow our knowledge of the science and the various systems within which it operates in order to fund research well.
This is at the heart of the next Working 2 Walk Stakeholder Session: Funders.
There is currently no adequate clearinghouse across the SCI landscape to best understand what’s going on, who’s doing what and where to put our ‘love’ aka energy to move it along. The landscape is so broad, varied and complicated that many of us don’t know where to begin.
This is in part what led us to organize the “Funder Session” at this year’s Working 2 Walk. We want to ask a wide range of funding organizations and foundations to explain how they see their role in supporting and investing in research, what is their guiding strategy and importantly how do they report back to the rest of us who are paying attention. In short, how do we or can we know what’s going on?
So, for this session we have invited:
- Linda Bambrick, PhD | Program Director at the Division of Neuroscience in Extramural Programs, NINDS
Dr. Bambrick, representing the largest funder of Spinal Cord Injury research in the US, will describe the multiple levels of SCI research supported by the NIH. She will also describe how the various institutes work together and how they are engaging other funding entities toward the shared goal of improving people’s lives.
- Melissa R. Miller, PhD | Program Manager, Spinal Cord Injury Research Program, Congressionally Directed Medical Research Programs
Dr. Miller, representing the Spinal Cord Injury Research Program (part of the Congressionally Directed Medical Research Programs) will discuss how SCIRP focuses its investment into areas of SCI inquiry that address critical gaps in SCI research, patient care, and quality of life. The program also includes the participation of people with lived SCI experience. They are asked to participate in grant application review, submit their own grants, or consult on research projects to ensure that the needs and wants of the SCI community are being addressed and met by SCIRP-funded research. The SCIRP believes that capturing and integrating the unique perspectives and experiences of people with lived SCI experience throughout the entire research and development process will lead to better and more impactful outcomes for people living with SCI.
- Jay Shepherd | Chair, Board of Directors, Christopher & Dana Reeve Foundation
We have asked Jay Shepard, who chairs the Board of Directors at the Christopher and Dana Reeve Foundation to talk to us about the guiding strategy behind the $142 million they have invested in research since 1982 and what they are planning for the future. He will discuss the progress of the “Roadmap for Spinal Cord Injuries” as a “a platform from which to accelerate and synergize efforts so that every opportunity to further the most promising science is afforded.”
- Jack Jablonski | Jack Jablonski Foundation
Lastly, Jack Jablonski of the Jack Jablonski Foundation will join us. Jack sustained an SCI during a high school hockey game in 2011 and after a groundswell of support, volunteers established the Foundation to support research that will advance recovery for everyone living with an SCI. Jack will discuss the foundation’s focus on bringing spinal stimulation/neuromodulation to the clinic. It is their belief that “when science we can believe in replaces the miracle every one of us hopes for, our cause will become a movement.”
It is our intention to provide a platform for funders large and small, new and old to enrich the discussion and help all of us to better understand who’s doing what...and where the movement is headed.
P.S. Though our Early Bird Discounts have ended, there are still deep discounts available (75%!) for Individuals with an SCI, their families and caregivers. We already have a record number of individuals from the SCI Community joining us. We're excited to see how this year's Virtual Symposium expands access and accelerates the conversation and action toward cures. REGISTER NOW!