Today is my last day in my role at Patient-Led Research Collaborative.
In the wake of the new administration, with so many US federal workers losing their jobs and our government being under attack, it feels particularly odd to share this update, but here we go.
It’s been a whirlwind of a 5 years - becoming newly disabled, starting an organization, researching a condition whose overlapping conditions have been neglected for decades, and advocating in the face of ableism, dismissal, and an ongoing pandemic. I certainly didn’t anticipate this path, but goodness I am proud of the work. Serving in this role truly has been the honor of my life.
While so much is left to be done, I do want to take the opportunity to reflect on some of what I’m most proud of. With all of the setbacks and attacks our community faces and will encounter in the next few years, it’s important to acknowledge our accomplishments in often unfriendly environments, underscoring the power in community.
A few highlights:
?? Conducting the first research on Long COVID in May 2020 while newly sick with Long COVID alongside Gina Assaf, Hannah Davis, Hannah Wei, and Athena Akrami
?? Building an organization with the PLRC team??
?? Putting more attention on the power and utility of patient-led research - through our research as well as the Patient-Led Research Scorecards, the Patient-Generated Hypotheses Journal, and the Patient-Led Research Fund
?? Partnering with so many amazing Long COVID, IACC, and disability organizations on key advocacy and research projects - there is so much power in joining together across communities
?? Testifying to the United States Congress in April 2021
?? Building strong relationships across the US government and having our research and policy memos referenced throughout agencies and Congress??
?? Contributing to medical education through our original research, our comprehensive reviews, and dozens of presentations across the globe
?? Introduction of the Long COVID Research Moonshot Act by Senator Bernie Sanders, after Dr. Michael Peluso and I initially called for a moonshot for Long COVID in Nature (October 2023) and the Long COVID community mobilized around the call
?? Authoring and co-authoring over 25 publications
?? Making lifelong friends ??
I am grateful to the PLRC membership, to everyone I’ve worked with over the last 5 years, and to the Long COVID community. We’re still a long ways off from the equitable and inclusive society we’re aiming for, with treatments, healthcare, and support for all, but I’m proud of what we’ve been able to do together.
What’s next? First up - resting and rebalancing through the summer. Once I am ready, I’ll be looking for new opportunities in safety net, disability, or science policy. To collaborate or if you have opportunities that may be a good fit, please reach out to me at [email protected].?
Forever in solidarity,
Lisa
