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 patients step away from work and school every day and 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 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.
By sharing her story, Fidji sent a personal message to the community. We have a massive medical problem where no one is shielded and unless we all get our collective act together quickly, we won’t be able to help the hundreds of millions (yes, 400M+) people impacted.
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 is how to create the model to get similar results for chronic illness.
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 to be the convener, the organizer, the driver, the accelerator for complex chronic illness. What does this look like? Why does it matter?
Expertise is scattered and we need to unite people to work together on problems that matter. An example is our CODA Craniocervical Dysfunction Initiative - craniocervical instability, compression, 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 formed the Craniocervical Dysfunction Initiative to examine 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 around problems that patients have spent years trying to solve one doctor at a time. And multiple avenues to launch studies that connect and answer the most pressing questions.
Gaps exist between what researchers have found and what patients and doctors can do. 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. Tal and 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 can get stuck and patients need CODA and its partners to help 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. Now we need to know if 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. We’ll also bring AI tools into the trial to help identify which patients may be most likely to respond. 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 thousands, if not more.
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. Say no to having another child.
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 plan to do for chronic illness what the MMRF did for cancer, what MJFF did for Parkinson’s and what the CFF did for cystic fibrosis. Real, tangible improvement of people’s lives.
Chronic illness steals dreams. Research gives people the chance to chase them again.