I co-founded BreakThru SCI, a national patient advocacy organization working to speed restorative SCI treatments to patients. We also push for regulatory change, so SCI trials can use designs that fit how the condition actually varies from patient to patient. I lead the organization's strategy and operations, own its partnerships, run fundraising, and built and manage its board.
When my brother suffered a spinal cord injury, I pledged my life to improving his. In his clinical trial, he and others in his cohort saw real, meaningful changes, but the trial didn't measure them, so they weren't taken seriously. We started advocating right away for regulators to account for the meaningful and variable outcomes SCI trials produce, and that became BreakThru SCI.
As co-founder, I run BreakThru SCI the way an executive runs a startup: I set strategy, raise the money, build the board and close the partnerships.
Organizational strategy and operations as we scale nationally.
$175K raised toward a $900K goal; donor and investor relations, accounting, compliance and monthly budgets.
Recruited the board co-chairs and members across health policy, regulatory, research, advocacy, nonprofit management and fundraising.
Primary owner of negotiating and executing partnerships with biotech, medtech and BCI companies, advocacy groups and researchers.
Built and ran our Capitol Hill briefing; support sponsors' FDA discussions from the patient perspective.
Hiring and onboarding, 501(c)(3) filings, internal systems, and our advocacy, social media and PR vendors.
Negotiated and executed contracted partnerships across industry, research and policy, including a community sponsorship for Department of Defense research.
Built and ran a congressional briefing, addressed congressional and Senate offices, and hosted a panel with Dr. Janet Woodcock, neurotrauma experts and patients.
Run fundraising and donor and investor relations, including regular donor update calls and written updates.
We sit in on meetings between the FDA and trial sponsors, helping them design patient-centric trials with relevant endpoints.
Recruited the co-chairs and key members covering health policy, regulatory affairs, research, advocacy, nonprofit management and fundraising, and put governance structures in place.
Hiring and onboarding, internal processes and systems, 501(c)(3) filings, donation receipts, accounting, fiscal compliance and monthly budget reports.
Direct our advocacy, social media and PR vendors on initiatives focused on regulatory and policy change.