Chronic Illness Steals Dreams. It’s Time to Give Them Back.
We received some hard news in our CODA family this summer.
Our founder, Fidji Simo, announced she was stepping down from her CEO role at OpenAI. Her chronic illness forced her to put her dream job on hold. Sadly, Fidji isn’t the only person who had to stop working to focus on her illness. In fact, more people living with multiple chronic illness diagnoses - POTS, ME/CFS, Long COVID, EDS and related disorders - are forced to step away from work and school every day. For those who do return, often they enter back by compromising work for health, choosing fewer hours, remote work, no travel. Or that much more discouragingly, compromising health for work. Exhausting days, full of pain and depletion, taking their fragile bodies beyond what they can handle.
The human toll is enormous. The statistics are staggering.**
For people with ME/CFS, 63% are unable to work because of their illness.
Among people with POTS, 72% have had to modify their jobs.
Long COVID cost the equivalent of 2.3 million full-time jobs in 2023 and $218 billion in lost earnings.
More than 400 million people worldwide live with Long COVID alone, which is more than the entire U.S. population of 343 million.
Let that sink in.
By sharing her story, Fidji sent a personal message to the community. This massive medical problem shields no one and unless we all get our collective act together quickly, we won’t be able to help the hundreds of millions of people who suffer.
People united around Fidji’s honesty, showing support for her and for each other. That same connection and urgency shapes what Fidji brings to CODA. Her illness is her driver, her compassion is her ballast, and her leadership and business expertise are her personal firepower to drive innovation and real progress.
Fidji joins a powerful tradition of leaders who turned personal connection to disease into a force for change. I’ve shared my experience previously working in disease research, where Kathy Giusti at the Multiple Myeloma Research Foundation (MMRF), Michael J. Fox in Parkinson’s, and the Cystic Fibrosis Foundation led the way. They organized their research ecosystems, forced collaboration, and made things move faster for patients with their diseases. I witnessed it firsthand. What we learn from them shows is what is possible with an expert model in place.
The MMRF raised more than $600 million for research, opened nearly 100 clinical trials and helped bring 15+ FDA-approved therapies to market. Life expectancy for multiple myeloma patients tripled.
The Michael J. Fox Foundation invested more than $2.5 billion in Parkinson’s research and built PPMI, a landmark data platform accelerating biomarker and therapeutic development.
The Cystic Fibrosis Foundation launched a venture philanthropy model to infuse hundreds of millions of dollars into their disease space and drove breakthrough therapies that got at the underlying cause of cystic fibrosis. In doing so, they transformed life expectancy for many patients.
CODA takes a page from other disease research organizations as the convener, the organizer, the driver, the accelerator for complex chronic illness. What does our model look like? Why does it matter for complex chronic illness?
Expertise is scattered. CODA unites leading experts to work together on problems that matter. An example is our CODA Craniocervical Dysfunction Initiative (CODA CCD). Craniocervical instability, brainstem compression, poor brain blood flow, spinal fluid leaks and more confuse and frighten patients. They receive diagnoses but don’t know how much these issues are causing how sick they are and how to fix them. CODA CCD is a multidisciplinary, coordinated program examining head and neck biology, with 8 expert Steering Committee members overseeing the program and 50 more experts acting as consultants. That means we can get 58 experts to launch studies that answer questions that patients have spent years trying to solve one doctor at a time.
Answers can get stuck in the research lab. We shorten the time between what science sees and what doctors treat. Expert scientists Professors Resia Pretorius, Doug Kell and their colleagues have shown that microclots and vascular problems may play a role in why patients get sick and stay sick. Shouldn’t we be testing patients for this? The CODA Vascular Initiative is taking that work into the real world. We’re working with doctors to look at what is happening in patients’ blood and with Dr. Mikki Tal and MIT MAESTRO to put capillaroscopes, small tools that let you see tiny blood vessels under the fingernail, into the hands of patients and doctors. The goal is simple: shorten the time between what science sees and what medicine does.
Promising treatments lie dormant. CODA and its partners move them forward. Inspiritol has spent five years developing an inhaled treatment for Long COVID and ME/CFS. Early research found an intriguing signal: patients had severely impaired CD8 T-cell function, and in a small group treated with Inspiritol, T-cell function and symptoms improved together. Using data and technology, we seek to know how it works in a larger group and who may benefit most. CODA is raising funds for a Phase 1/2b trial led by ME/CFS expert Dr. Nancy Klimas in collaboration with CODA, Dr. Liisa Selin and Inspiritol. Once again, strength in numbers. This is how we move from a promising signal in a small group of patients to a treatment that could help many.
Fidji had one of the biggest jobs in the world and had to step away from it because of her health. Another patient may have to leave college. Turn down a promotion. Move back home. Miss their best friend’s wedding. Watch someone else take their child to their first day of school. Miss every holiday with family. Say no to having a child. Lie in bed while the world moves forward. It hurts to write. It’s brutal to live.
These are the real costs of chronic illness.
We want an 18-year-old to head off to college without the fear of having to come home. We want a 22-year-old with POTS to choose a career based on what she loves, not what her body can tolerate. We want the person with Long COVID who hasn’t worked in three years to go back to work. We want top-level executives at the peak of their careers to have the chance to choose their next dream job.
And this is why CODA exists. To organize, unite, fill gaps, move faster. And bring treatments to people who need them. We are doing for chronic illness what the MMRF did for cancer, what MJFF did for Parkinson’s and what the CFF did for cystic fibrosis. Get treatments approved, understand who will respond to which treatment and bring tangible, meaningful improvement of people’s lives. So people can live the life they deserve.
Chronic illness steals dreams. The CODA model gives people the chance to chase them again.
Let’s do this. Together.
**Sources:
ME/CFS employment: Diagnostics (2019)
https://pmc.ncbi.nlm.nih.gov/articles/PMC6963831/POTS employment: Journal of Internal Medicine (2021)
https://pmc.ncbi.nlm.nih.gov/articles/PMC9156448/Long COVID employment and lost earnings: Communications Medicine (2025)
https://www.nature.com/articles/s43856-025-00947-8Global Long COVID estimate: Nature Medicine (2024)
https://www.nature.com/articles/s41591-024-03173-6U.S. population: U.S. Census Bureau
https://www.census.gov/popclock/