Luck transformed: Turning unpredictable good days into scientifically proven answers
Grace and Molly celebrate wonderful news together!
Just last week, my daughter Molly got engaged. It was beautiful—true love, a hopeful future, and a joyful celebration surrounded by family. It genuinely filled my heart for her and everyone who loves her.
And thankfully, Grace, her sister, was there too. It was a lucky day.
Last fall, Grace spent months in bed. She couldn’t eat. Lived with excruciating, constant pain and dizziness. She was deep in a life-altering two-year crash. And then—slowly, unpredictably—she started to climb out.
We couldn’t point to the one thing that flipped the switch. Maybe the gradual, slightly improved intestinal motility made the difference. Could it have been the incremental pain reduction or somatic therapy? Perhaps it was a new medication that took its time. Did the combination as a whole bring improvement? Truth be told, we had no idea. We worked hard. She worked harder. We tried everything and went to countless appointments. But there was no clear reason she got stronger. We were all just happy she was.
It felt like luck. And it was - some magical, medical gold dust sprinkled with determination. But, to keep her well, we’ll need much more than magic. We need science.
So on that special day, Grace was one of the lucky ones. She stood beside her brother, Thomas, her sister, her sister’s fiance, and our new extended family. She laughed. She smiled. She was present.
And as a mom, I stepped back and took it all in. I didn’t take a second of it for granted because I knew these moments may be fleeting. As a research leader, I was happy, but worried. There is far too much we still don’t know. One lucky day, week, month or year shouldn’t feel like a miracle. It should be reproducible. Patients need more than good fortune.
“It’s only a matter of time before the crash happens again.”. Unfortunately, this is what patients like Grace still hear and feel after a stretch of good health. That is no way to live. I do not accept it. Neither does my family. And neither do our patients.
Like Alexandra, our Community Director, who left a meeting in so much pain she had to go to the ER. Her voice cracked as she told me. She’s been there more times than anyone should. She lives with a feeding tube, migraines, CCI/AI, POTS, EDS, MCAS and more, trying every treatment she can. She’s a fighter. I know you know exactly what I mean.
Alexandra, our Community Director—on one of her lucky days, and deep in the struggle most never see.
Or Steven, a longtime ME/CFS, CCI, POTS patient who reached out to me in despair—suddenly bedridden, no clear cause. He could barely speak. Two minutes, maybe three, before the fatigue shut everything down. All he did last week was try to go out in his wheelchair and then everything collapsed. He went back to bed, defeated.
Or a dear friend, who is also a multisystem patient, who called me in tears after being refused care. Told she was “too complex.” Too many medicines. Too many diagnoses. And yes—for today’s system, she is. And that’s exactly the problem we need to fix. Now.
Patients Don’t Live in Categories—And Neither Should Research
Each story sounds slightly different but altogether the same. Patients are living with a multitude of symptoms and diagnoses. And every one of them reveals the same truth: the model we’re using doesn’t match the complexity with which patients live.
This isn’t one condition. It’s a network of immune, neurological, structural, and autonomic dysfunction. Patients don’t experience them in isolation, so we shouldn’t study them that way either.
ME/CFS, Long COVID, POTS, EDS, MCAS, and other multisystem disorders affect hundreds of millions of people. They require a research system that matches their scale, complexity, and urgency.
Bringing It All Together for Speed: CODA’s Research Engine.
CODA is a full-scale research engine working across conditions to unite best–in-class science and focuses on the interconnectedness and overlapping biology of these patients. This unique research engine is designed to deliver progress across complex, overlapping conditions—not one day, but now.
Science at this scale and complexity demands a well-coordinated, data-driven approach to match the urgency and intricacy of our patients’ needs.
This work requires fuel: data, funding, talent, urgency, and relentless drive.
And we’re moving fast to create it. In just 9 months, here’s what CODA and its partners have done:
Opened a biobank and data platform grounded in real patient experience—moving toward a landmark longitudinal dataset for the best scientists in the world to study.
Collaborated with PrecisionLife to confirm key genetic drivers of Long COVID in a diverse U.S. cohort—highlighting new targets for diagnosis, treatment, and drug repurposing.
Funded the MELO Study to uncover genetic drivers of ME/CFS and Long COVID, using deep phenotyping and multi-omic analysis to identify subtypes and treatment targets.
Supported genomic research in endometriosis and adenomyosis—revealing distinct biological signals that could drive more precise diagnosis and care, using data from the All of Us program.
And even more importantly, here’s where we’re going next—including a landmark study on CCI, AAI, and the structural mechanics driving complex disease:
CCI/AAI Study: Launch the largest-ever collaborative study of craniocervical instability (CCI), atlantoaxial instability (AAI), and other structural drivers—linking imaging, physiology, and biology.
Immune + Proteomic Profiling: Identify immune patterns and subtypes across complex conditions using advanced proteomics and immune assays—laying the groundwork for precision diagnostics and targeted treatments.
MCAS + Peripheral Nerve Dysfunction: Map the circuits driving pain, fatigue, dizziness, gastrointestinal symptoms, and post-exertional crashes by investigating links between mast cell activation, sensory signaling, and autonomic nerve pathways.
Cross-Condition Collaboration: Accelerate progress across ME/CFS, Long COVID, EDS, POTS, MCAS, and other overlapping disorders through integrated research and partnerships with leading foundations and scientists.
Power the engine. Fuel the science. Help us move faster.
If you’re a patient, a caregiver, a researcher, a donor—or someone who refuses to settle for the status quo—this is your moment.
For too long, complex conditions like ME/CFS, Long COVID, POTS, MCAS, EDS, and others have lived in the shadows. Too little research. Too few answers. Too many people left to navigate a broken system on their own.
Patients are still waking up every day asking:
“Is today my lucky day? Will someone finally crack the code? Will something finally change?”
That’s not good enough.
CODA is building a full-scale research engine designed to deliver progress now—not someday. But it only moves if we all show up.
Every donation pushes science forward.
Every act of support brings us one step closer to answers.
Together, we can transform lucky days into lasting healthy ones.