Dear Solve community members,
As summer evolves into autumn, I write to share news about our continuing evolution and growth.
In the last several months, we deepened our strategic commitment to identifying diagnostics and treatments for people with ME/CFS and Long Covid, sharpened our focus on translational research, made significant progress on the initiatives that support our mission and grew our team to reflect our ambitions.
Translational research transforms an idea into a study, a study into clinical trials and clinical trials into approved diagnostics and treatments.
Our efforts are gaining momentum and enabling some notable accomplishments.
- Our You + ME Registry, designed to accelerate research on diagnostics and treatments, just marked its one-year anniversary by hitting 5,000 members. It’s on track to reach 10,000 by mid-2022 and is a robust resource for researchers.
- Our saliva biomarkers study, using You + ME Registry data, researches a potential ME/CFS diagnostic test recently launched. We anticipate initial results by early next year.
- Our Covid Vaccination Study, which also employs You + ME Registry data, researches how Covid vaccination affects the health of people with ME/CFS and Long Covid. We plan to share results in the next few weeks.
- Our work with Congress resulted in $1.15 billion to NIH that is now deployed to Long Covid research. We believe the results of this study will enrich our understanding of ME/CFS and lead to improved outcomes.
We’re also championing The Covid–19 Long Haulers Act, a bi-partisan bill introduced by Representatives Beyer and Bergman, which addresses urgent needs in medical education and data harmonization related to Long Covid and ME/CFS.
- Our Ramsay Grant Program, which funds ME/CFS research and introduces new researchers to ME/CFS, expanded to incorporate Long Covid and the new Stupski Awards, which support research using You + ME Registry data. [We announced the 2021 Ramsay Researchers in September. This year, grant applications increased by 130% and earned the highest scores ever from our peer review panel.]
Our team is also changing, reflecting our ambitions and growth.
- Joseph Komsky joined us this month as director of development. Joe has significant experience supporting research at organizations like the Sanford Burnham Prebys Medical Discovery Institute as well as The City of Hope and the ALS Association. He has a BSE from the University of Pennsylvania.
- Kathleen Mudie came on board as research manager for the You + ME Registry. Previously, Kate was a research fellow with CureME at the University of London and a field technician with the San Juan del Sur Sister City Project. Kate has an MSc from the University of London and a BA from Simmons College.
- We welcomed Leslie Phillips, an epidemiologist, as consulting director of product management and operations for the You + ME Registry, a new position. She has a PhD from the University of Washington, an MS from the Harvard School of Public Health and a BA from the University of Texas at Austin.
- Sadie Whittaker, our chief scientific officer, will transition to found and chair our You + ME Innovation Council as of January 2022. The Council is a key component of our efforts to strengthen and expand our research capacity. Sadie will share more about it soon and we’ll celebrate her many contributions to our work in the coming months.
- Last, as yet another step to intensify our commitment to identifying diagnostics and treatments, we will convert the chief science officer role into two roles: vice president for research and chief medical advisor. We’ll share more information about these positions in the coming weeks.
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Together, we can finally end the suffering of millions.
President & CEO