Working 2 Walk Symposium
Where research science meets the consumer. Since 2006 U2FP has hosted this unique and empowering symposium, bringing together scientists, practitioners, paralysis survivors, and family members for a dynamic exchange of information and strategies. The conference fosters collaborations among all of the key stakeholders in the quest for a cure, and has led to productive partnerships in the scientific and advocacy communities. The Working 2 Walk Symposium has been held in Chicago, Phoenix, Washington, DC, Irvine, CA, Boston, Seattle, and is scheduled for Bethesda, MD in 2015.
Legislative Advocacy on behalf of the Spinal Cord Injury Community
From 2005-2009 U2FP mobilized advocates from around the country to work for passage of the Christopher & Dana Reeve Paralysis Act, which ultimately became law in March of 2009. U2FP supporters have also been to Capitol Hill to advocate for the Regenerative Medicine Act of 2011. At the state level, U2FP has been active in the campaign to finance the Roman Reed Spinal Cord Injury Act in California and to pass the SCI/TBI bill in Minnesota. We provide the resources to support important legislation that will help accelerate the progress of research into finding a cure for paralysis.
Take Action Toolkit
Our Advocacy Toolkit is a step-by-step booklet that offers more than ideas, it tells you HOW to put advocacy into action. Based on the experiences of community members who are living with paralysis, the Toolkit gives specific guidelines for a variety of actions you can take, from writing a letter to the editor to organizing your own fundraiser. There truly is an activity to suit every ability, budget or time frame. The Toolkit is available as a free download on the U2FP website.
Clinical Trials Table
Our amazing group of volunteers compiled this comprehensive list of trials that are ongoing, pending, and closed from around the world. People often get discouraged with the slow pace of research and translation, but the table shows that there is actually a lot of trial activity, targeting curative therapies for paralysis from several different angles. The table is updated regularly and is an excellent resource for the community.
At our Working 2 Walk Symposium and other meetings throughout the year, we bring together the research, investment and consumer communities. With face-to-face information-sharing and strategy development, we foster real progress in the cure movement. Our facilitation has led to collaborations amongst scientists, and over $2 million in targeted research investment by community funders.
Beginning in 2010, U2FP recorded the live presentations at the Working 2 Walk Symposium and posted them online, free of charge. Viewers in over 50 countries have now had the opportunity to access the latest in scientific research news as presented at the symposium, a valuable service to the SCI community that is often limited in its ability to travel.
U2FP Leaders’ Blogs
Our Executive Director, Marilyn Smith, began writing her “Cure Warrior’s Blog” in 2011. Marilyn shares the unique perspective and philosophy of an SCI mom as she surveys the big picture of seeking a cure for paralysis. Chris Powell, another SCI mom and one of U2FP’s research experts, offers links to the most promising and respected news items from the scientific community at “Spinal Cord Research and Advocacy”. Our blogs speak to the personal connection that all of us at U2FP have when it comes to curing the chronic spinal cord injury.
Scientific Advisory Board (SAB) and Advocate Research Committee (ARC)
Launched in 2012, these groups are working together to identify and advance the most promising research to cure CHRONIC spinal cord injury. While other organizations have SAB’s, U2FP charted a unique course with the establishment of its ARC to act as a consumer representative and sounding board when evaluating science. The information and recommendations gathered by these groups will help members of the community to direct their fundraising dollars to the most worthy labs.