Complex Disorders Alliance

CODA CEO Amy Rochlin joined the Visible Make Visible podcast to share the experience, personal connection, and vision driving her work to change how we research and treat complex disorders.

Before CODA, Amy spent years working in disease research, helping build collaborative, data-driven models designed to move science from the lab toward treatments. Then complex illness became personal when her daughter became chronically sick at 16.

In this conversation, Amy shares how those experiences shaped her vision for CODA: bringing leading experts and research together across Long COVID, ME/CFS, POTS, EDS, and other overlapping conditions to better understand individual patient biology and move toward more targeted treatments.

Amy also takes listeners inside CODA’s research, including the CODA Craniocervical Dysfunction Initiative (CODA CCD), CODA Vascular Initiative, MELO Study, Sequence ME & Long COVID, and our work to advance clinical trials and patient subtyping through precision medicine and AI.

It’s a conversation about where this field can go next and how we can build a faster, more connected approach to research for complex disorders.

🎧 Listen to Amy’s full conversation on Make Visible at the link in our bio.

We are excited to announce that we’ve adapted the CODA 50 Challenge so our community can fundraise through activities or passions they enjoy, at an effort level that works for them.

A fundraising challenge designed for our community, where you decide what the challenge looks like.

Living with complex disorders is already a challenge every single day. Traditional fundraising challenges often ask people to take on a physical goal, like running a 5K or marathon or biking a certain distance. For many people with complex disorders, a physically demanding challenge simply isn’t possible.

So we created a different kind of challenge.
No matter your ability. No matter your diagnosis.

This fall, choose something you enjoy and build your 50 around your passions, hobbies, or anything that brings you joy.

50 represents a challenge. We chose 50 because reaching it takes time, intention, and commitment, while giving patients, friends, family, and supporters the flexibility to take part in a way that works for them.

Do one activity 50 times or combine different activities to reach 50, all at the pace and energy level that works for you.

Then, use your 50 to inspire your friends and family to support your challenge and CODA’s research.

Every dollar you raise goes directly toward CODA’s research to advance better treatments for people living with complex disorders.

Choose your challenge. Set your pace. Make 50 your own.

Get started: www.givebutter.com/YOURWAY

October is Dysautonomia Awareness Month.

Dysautonomia is an umbrella term for a range of disorders involving the autonomic nervous system. But even within the same diagnosis, patients can experience very different symptoms and underlying biology.

That complexity is part of why CODA takes a whole-patient approach to research.

We look for biological patterns within and across complex disorders, study how changes across the body’s systems relate to one another and to symptoms, and work to better understand meaningful differences between groups of patients.

The goal: help inform research into more targeted approaches to treatment.

This Dysautonomia Awareness Month, make a gift to fuel CODA’s research and help advance our understanding of the biology behind these complex disorders.

🔗 Donate today: https://hubs.la/Q04yNZXg0

This month, CODA CEO Amy Rochlin is turning over her CEO Blog to a member of the CODA community, Bert Spielvogel.

One year after becoming sick with ME/CFS, Bert is using his lived experience as a patient to raise funds for research. By sharing his story and rallying his community, he is helping drive greater investment in the research patients urgently need.

To date, Bert has now raised more than $30,000 for CODA. His fundraiser has generated $20.6K in donations, and Bert and his family are contributing another $10,000.

CODA is incredibly grateful to Bert for sharing his story and helping move us closer to better answers and treatments for people living with complex disorders.

Read Bert’s story by visiting the link in our bio and consider making a gift to his fundraiser to help advance the research that patients like Bert urgently need.

Paige’s story represents millions of people living with complex chronic disorders who are waiting for research and treatment advancements that can give them more possibilities for their futures.

At CODA, we work to move research forward faster because patients deserve the opportunity to plan for the lives, families, and futures they dream about.

Every patient has a reason they can’t wait.
Paige’s is one of them.

Make a gift to CODA in honor of Paige and help accelerate research for her and millions of patients living with complex disorders.

Visit the link in our bio to donate.💙

September is Chiari Malformation Awareness Month, an opportunity to raise awareness and advance understanding of a condition that affects the region where the brain and spinal cord meet.

For people living with Chiari I malformation, understanding the condition can involve more than measuring the position of the cerebellar tonsils. The anatomy and function of the craniocervical region, including structural mechanics, neurological function, blood flow, and cerebrospinal fluid dynamics, are important areas of continued research. We also adknowledge Complex Chiari is an area of research to advance.

Not everyone with Chiari I malformation has craniocervical instability or craniocervical dysfunction (CCD). But Chiari helps illustrate why studying this region more comprehensively matters.

Through the CODA CCD Initiative, we are advancing a research strategy that examines the craniocervical region across multiple interacting systems, with the goal of strengthening the science, improving how patients are studied and assessed, and building a stronger foundation for treatment advancements.

This Chiari Malformation Awareness Month, we recognize the patients and families living with Chiari and the importance of research that moves us toward better answers and treatments.

🔗 Learn more how you can support the CODA CCD Initiative at the link in our bio.

Sydney’s patient experience reflects the reality of millions of people living with complex chronic disorders who are still waiting for better answers and treatments. She lives with severe chronic pain and has received multiple chronic illness diagnoses, a journey that has profoundly impacted her daily life.

We’re incredibly grateful to Sydney for giving a voice to why progress matters so deeply for patients living with complex disorders.

People like Sydney motivate us to keep pushing research forward faster, with the goal of advancing better answers and treatments that can meaningfully change patients’ lives.

Make a gift to CODA’s Research Portfolio in honor of Sydney and help accelerate progress for millions of patients living with complex disorders.

To donate visit the link in our bio or www.givebutter.com/CODARESEARCH

CODA CEO, Amy Rochlin, will participate in the National Institutes of Health (NIH) workshop, From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders, taking place September 23–24 in North Bethesda, Maryland.

The two-day workshop will bring together research, clinical expertise, and patient perspectives to examine how discoveries in multi-system disorders can move toward clinical research and therapeutic development.

On September 24, Amy will join the session “Future Directions: Advancing Clinical Research, Translational Advancement & Therapeutic Discovery,” moderated by Alexander Denker, PhD, Chief of Staff, Division of Translational Research at the National Institute of Neurological Disorders and Stroke.

She will join Steve Gardner, PhD, Jan Kubanek, PhD, Michael VanElzakker, PhD, and Danielle Luciano, MD, for a discussion focused on future directions for advancing research and therapeutic discovery.

CODA looks forward to contributing the patient perspective to this important conversation and helping advance research toward meaningful treatment progress for people living with complex disorders.

To learn more about the conference, you may visit: https://mregs.nih.gov/ninds/vf45-44z5606

The CODA Vascular Initiative is advancing research to better understand how changes in blood flow, inflammation, and oxygen delivery may play a role in complex chronic disorders.

By uncovering these biological changes, researchers hope to better identify the patients affected and develop more targeted treatments that address the underlying drivers of illness.

Research like this is only possible because of supporters like you.

Help accelerate the CODA Vascular Initiative by making a gift today: https://hubs.la/Q04vp5kX0