#329 From BCI Clinical Trials to the Patient-Focused Drug Development landmark meeting for FDA Clinical Trial Advocacy Louise sits down with Ian Burkhart, a brain-computer interface pioneer, patient advocate, and co-founder of the BCI Pioneers Coalition. After sustaining a C5 spinal cord injury in 2010 at the age of nineteen, Ian made history as the first person to restore voluntary movement to a paralyzed hand using an implanted brain-computer interface. Ian shares his journey from his early days playing competitive lacrosse and studying video production at Ohio University to becoming a groundbreaking participant in a clinical trial conducted by Ohio State University and Battelle Medical Institute. He describes the profound experience of seeing his hand move in response to his thoughts, the reality of transitioning away from the trial when the device was removed, and the vital importance of incorporating lived experience into neurotechnology research. As the past president of the North American Spinal Cord Injury Consortium and a member of the FDA Patient Engagement Advisory Committee, Ian details the rigorous hurdles of translating medical devices from lab settings to commercial availability. He also highlights his recent work co-hosting the landmark externally led Patient-Focused Drug Development meeting, emphasizing the critical need for the FDA to hear directly from the spinal cord injury community and their caregivers to help shape future combination therapies, clinical trials, and biological advancements, and how YOU, those living with SCI, your families and care providers, can have your voices heard by the FDA in this critical next 30 days. Listen in. Links scipfdd.org scipfdd.org/comments bcipioneers.org nascic.org Have an idea or feedback for me? Email me, at louise@blinkofaneye.org #BeginAgain #HopeforEverything Be part of supporting BLINK of an Eye nonprofit as we support SCI families in crisis and advance science. Give $25 today! www.BLINKofaneye.org Stay Connected: Subscribe, leave a review, and share this episode with anyone interested in advocacy for SCI funding! BLINK of an Eye® Podcast is sponsored by BLINK of an Eye® Non-Profit: A non-profit which is an essential national resource for Spinal Cord Injury, originating the first SCI Navigator Program in the country for newly injured SCI Families by SCI Families as an essential national resource for Spinal Cord Injured families in the first days, weeks and months of SCI crisis when life turns upside down and few medical teams in the US have SCI expertise or lived experience. They bring essential support, connections, life expertise and resources. BLINK of an Eye non profit deploys a rapid response HEAL Team for ICU bedside support to create an Extraordinary Experience despite the devastation for SCI families and a personal SCI Navigator for 24/7 support in the first 90 days and throughout the Miracle Year. BLINK of an Eye non profit also provides a Multidisciplinary Wrap Around Team and SCI Expert Medical Panel. Stay tuned for their launch of a National Digital Resource Library, the SCI PLAYBOOK, chocked full of essential SCI information and trauma informed responses for the first hours, days and months after injury. To find out more, get involved, or make a donation, visit www.BLINKofaneye.org. Blink of an Eye is sponsored by Baltimore Mediation: To find out more about cutting edge conflict transformation skills courses to learn relational conflict theory and advocacy, mediation, crisis and trauma interventions and support for leaders and anyone navigating or facilitating difficult situations, conflict, or trauma, visit the website www.BaltimoreMediation.com and register for nationally certified 40 hour courses, including the Enneagram of personality for mediators to know themselves to stay neutral while offering opportunity for other’s empowerment. To find out more about Louise visit: www.BlinkofanEye.org, www.BaltimoreMediation.com, www.BeingRelational.com
