Unite to Fight Paralysis (U2FP) is working hard to help find a cure for paralysis and knows that it will take hard work on many fronts. Fundraising, clinical trials, research, advocacy… any one of these efforts alone will not be enough.
But, when brought together in an organized fashion, we have an opportunity to make great strides. There are a number of ways you can join U2FP to help fight for a cure.
Progress will be made, be a part of it!
The 12th annual Working 2 Walk Science and Advocacy Symposium will take place on October 13th and 14th 2017 in Miami, FL. The event is a unique opportunity to convene leading scientists and researchers working in the field of spinal cord injury cures alongside members of the spinal cord injured community, advocacy organizations, foundations, clinicians, biotechs, and industry representatives to confer on the state of research and the community’s role in expediting it.
These two days represent a dynamic environment to learn, network and develop relationships across many stakeholder groups involved in the work to improve the quality of life for individuals with SCI, with an explicit focus on cures for paralysis. U2FP’s mission is to unite, educate and call the SCI community to action.
Every year, approximately 200-225 people gather to hear updates on current research projects from scientists coming from around the world, learn up to the minute information on clinical trials, and are challenged with increasing opportunities for community members to have an impact on the larger research economy beyond appeals for their money.
The conference embodies U2FP's mission and propels several programs beyond the conference. Because of this, the conference presentations are recorded and curated so that anyone can view them and get a feel for the flavor of the conference.
United 2 Fight Paralysis works very hard through the partnerships they develop with event sponsors to make the conferences affordable and accessible to members of the SCI community. But there are still many who are unable to attend or decide they cannot make the trip, which is U2FP moves the conference location around the country every year.
Nonetheless, for those who simply cannot attend, the conference is broadcasted via a live blog and presentations from each year’s event are video archived.
Whether you are a community member or support, the Working 2 Walk Science and Advocacy Symposium is worth attending. If you have any questions, please email: unite@u2fp.org or call 888-564-2228.
The U2FP Scientific Advisory Board assists small to medium sized foundations from around the globe in determining the value and merit of a variety of research proposals. Many of these foundations give significant amounts of money to research projects without having the expertise to determine their merit. Unite 2 Fight Paralysis assists and advises them with a board comprised of active and respected scientists in their fields.
Since the pilot program started three years ago, the U2FP SAB has reviewed grants totaling just under $6M. As a result of those reviews, $4M has been directed to promising research and another $900K is currently under review.
In addition to guiding critical funding to the most promising research, the SAB provides guidance on experimental and clinical trial protocols to achieve the most meaningful results. This program is provided at no cost to organizations seeking our support and currently supported by the generosity of the Allergan Foundation.
U2FP’s newer initiative, started formally in 2015, is the Cure Advocacy Network. Following the success of our Executive Director’s leadership in passing the Minnesota SCI/TBI Research Grant Program, which catalyzes research focused on functional outcomes for those living with SCI/TBI, U2FB decided to call on their community to foster initiatives in their respective states.
As a result, U2FB is working with groups of advocates in several states and currently have bills moving through legislatures in both Pennsylvania and Washington. Unite 2 Fight Paralysis has other advocates in the early stages of the process in Wisconsin, Ohio and Georgia.
The advocacy group's medium term goal is not only to catalyze research in these states by creating a stable funding mechanism, but to more broadly cultivate the necessary collaborative relationships and capacity to influence what is funded and to what end.
The long-term goal is to cultivate a network of savvy and effective advocates from amongst our community to bring the issue to the federal level in order to have the necessary influence on federal funding, federal guidance and the regulatory pathway.
If you would like to join one of the existing efforts or start a group in your state please reach out to Matthew Roderick at (888) 564-2228.
U2FP has also launched a podcast called SCI Curecast. This is an attempt to make many of the complexities and lack of context around the research economy more understandable in an easy to use format. The group's Executive Director, Matthew Rodreick and Kate Willette (author of “Don’t Call It A Miracle: The Movement To Cure Spinal Cord Injury”) conduct interviews with scientists, advocates and others as well as try to unpack some of the science.
Team U2FP helps connect runners and wheelers who wish to raise money for the group's work. The team's principal race is connected to the Chicago Marathon but assists runners/wheelers with races across the US.
Team U2FP also provides the Spinal Cord Research and Advocacy Blog which curates and links to research publications and advocacy news from around the world and has a significant following from across the community of folks with SCI, scientists and various stakeholders who are following news on the research.
Unite 2 Fight Paralysis is doing all of this on a shoestring budget because they are a grassroots organization made up of individuals who are either injured or have a direct connection to someone with an injury. U2FP’s advocates are passionate about work and driven by the conviction that we need to build a movement from within our SCI community who understand that we can, and are, having an impact on the larger research economy. There is much work to do, join the fight today!
