We’ve Earned the Right to Stop Justifying and to Start Solving.
My daughter, Grace, undergoing treatment.
From my family’s journey to countless patient stories. The message is clear. Patients need a system to provide answers now.
For those of you who know me even just a bit, you know my connection to our patients and that my demand for progress begins in my own family. My daughter, Grace, age 28, has lived with chronic, painful, life-altering illness for over twelve years. At age 16, her life disappeared as we once knew it. I often describe the journey as brutal, unfathomable, lonely, unbelievable, but the truth is, none of those words ever quite capture what it feels like for a family to live with chronic illness.. To be a patient who wakes up every day sick. And to be a mom bearing witness to that and often feeling powerless. The experience defies words. All I know is we need to move faster. And I’m grateful I’ve worked in a world of disease research where that is indeed possible.
To be honest, like many families who live this journey, many days I’m exhausted from trying to explain, trying to convince, trying to justify the reality of what patients like my daughter endure every single day.
So today, I’m pivoting a bit (I do love a great pivot). I’m not writing for the questioners, the skeptics, the gatekeepers, or those that too often minimize what we live through due to the fact they are fortunate enough not to be personally impacted by these conditions.
I’m writing to YOU. Our community of patients, caregivers, family, friends and those who walk this journey with you genuinely. The hundreds of millions of patients and their circle of support. Yes, I did say hundreds of millions of people are impacted worldwide - 400 million at least are estimated to be impacted on some level.
That is the magnitude of what we are facing.
That is also the power of who we are.
We’re not waiting
It’s important as a leader of a disease research group that I learn from and listen to our patients - so every single day, I talk to them. Early morning, at night, lunch, dinner. Whenever I can. Often, I’m speaking with parents of children who are desperate for help. Or adults who are trying to navigate life and find answers to their health.
By the time they speak with me, these patients have exhausted so many options and aren’t just slightly sick or “a little under the weather.” They are profoundly ill. The other day I spoke with a young man who couldn’t even hold up his phone. The heartbreak in his voice was searing. He needed more now.
To be clear, the one thing I hear over and over from patients is: “I can’t wait for research.” And I get it. I understand what it’s like to watch as my child can’t function, can’t eat, sweats profusely, is vomiting while the world swirls around us. The last thing anyone wants to hear is “Well, 10 years from now the data shows….” Are you kidding me? We can’t even bear 10 minutes.
I get it. Completely. When you are this sick, the idea of waiting another five or ten years for answers feels impossible. That’s why CODA isn’t just about “someday.” CODA is about today, about now. CODA is the fuel that makes science move fast.
“We are not waiting for breakthroughs to trickle down decades later. We are focused on moving fast and getting tools into the hands of doctors and patients now so people can get better as quickly as possible.”
How CODA Listens and Responds
Here’s where I want to give you hope. And ask for your partnership.
At CODA, we amass the key data we need to better understand our patients’s immediate issues quickly and deeply. We then work with amazing partners to develop new and repurposed treatments.
To that end, one of the most frequent and frustrating areas that I hear about from patients is their instability of their head and neck - often diagnosed as “Craniocervical Instability”, “Atlantoaxial instability”, brainstem compression or other related diagnoses.
In direct response to patients needs, I’m thrilled to share that we are launching a landmark effort: the CODA Craniocervical Initiative (CCI Initiative). It is but one example of the vital work we’re doing to give more options to patients.
Why are we choosing this path for patients? First, head/neck involvement appears to exist for many, many patients across our overlapping conditions. If you have been diagnosed with a combination of Long COVID, ME/CFS, Chronic Migraine, EDS, MCAS, Gastrointestinal distress and more, patients often receive a CCI or head/neck involvement diagnosis and appear to have problems with blood flow regulation, chronic pain, brain fog and severe fatigue.
While some work has been done to understand why these symptoms occur and in some can be severe, not enough focus has been placed. That’s where CODA and our partners come in and why we need to move—to find safe, effective treatments for patients as fast as possible..
The CODA Craniocervical Instability Initiative (CODA CCI Initiative) will take on this challenge by examining how factors such as instability, compression can impact blood flow, glymphatic activity, autonomic response, musculoskeletal dynamics (and more).to specifically understand what is happening within patients’ bodies and find the right treatments.
The steps are clear:
Analyze key data.. Craniocervical instability, Atlantoaxial Instability and related conditions are under recognized, yet play a critical role. Data exists and we need to examine that data quickly.
Unite & give speed to specialists from multiple areas. For the first time, leaders across neurosurgery, neurology, cardiology, rheumatology, genetics, immunology, gastroenteroogy, rehabilitation medicine, glymphatic research, and more will work side by side.
Identify cascade of symptoms. What explains the wide range of issues people experience when the neck is unstable or compressed?
Identify “repurposed” treatments. Each new discovery brings us closer to treatments that can help people feel better, regain function, and enjoy life again. Existing treatments for other conditions may hold the key and we will focus our efforts here.
Bring treatments to patients. Patients can finally get relief and regain their health.
And we need to do this fast. We are in moving the Initiative forward right now and with additional funding, we can move faster and work to address the many needs of our patient community.
A Today We Can Believe In
Because what is amazing about this work, initial results don’t have to take forever and they can inform future work. We have data available that can be analyzed quickly to turn this information action. Our timeline is very aggressive because we know patients can’t wait.
That’s who we are. CODA is the fuel that makes the science move faster. We are not waiting for breakthroughs to trickle down decades later. We are focused on taking discoveries and getting tools into the hands of doctors now — so patients can get the care they deserve.
This is the hope I want to leave you with: change doesn’t have to take a lifetime. With enough urgency, with enough resources, with the power of this massive community of patients and caregivers, we are speeding from research to solutions. Today. Please join us.
