Complex Disorders Alliance

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

Research shows the profound impact complex chronic disorders can have on patients’ lives.

63% of people with ME/CFS are unable to work.¹
72% of people with POTS have had to modify their jobs.²

Behind these numbers are people with dreams for their careers, education, families, independence, and futures.

Those futures are what drive our work at CODA.

In her latest CEO blog, Amy Rochlin shares the urgency behind our mission and how CODA is bringing the leading experts in this field together to accelerate research and advance treatments that can meaningfully improve patients’ lives.

Chronic illness steals dreams. It’s time to give them back.
Read Amy’s latest CEO blog at the link in our bio or visit www.complexdisorders.org/ceo-blog

Sources:
¹ Diagnostics (2019)
² Journal of Internal Medicine (2021)

Please welcome Lucy Haney as the newest participant in the CODA 50 Challenge.

Lucy lives with hEDS, MCAS, dysautonomia, narcolepsy type 1, and dynamic styloidogenic venous compression. Despite the challenges of living with complex chronic disorders, Lucy continues to turn her experience into action, helping advance the research needed to bring better answers and treatments to patients.

Thank you, Lucy, for being an active voice and standing alongside our community.

100% of donations raised for the CODA 50 Challenge makes research move faster to find better treatments for people who need them!

Support Lucy’s CODA 50 Challenge to fuel the research patients are waiting for: https://hubs.la/Q04tpH8n0

This is an important piece from journalist, Jessica Slice, who
discusses her family's experience with PANS.

Her daughter, transformed from a vibrant little girl to developing excruciating widespread pain and sudden, severe neurological symptoms.

PANS is one of the most demonstrative neuroimmune conditions across complex chronic illness.

For many young children, infection - in this young girl's case, strep infection - can trigger a seemingly overnight biological response, driving neurological symptoms.

Treatments are indeed possible: antibiotics, IVIG, and other immunomodulatory therapies.

One Friday morning last fall, writer Jessica Slice’s eight-year-old daughter Rose woke up with a sore throat. At first, it felt like a minor cold, but over the next few days, she started to change. First, her arms and legs would suddenly and uncontrollably shoot out in front of her. Not long after, Rose said she felt like she was “vibrating inside.” Within a week, she began to wail for hours on end, threaten to harm herself and others, and displayed severe motor control problems.

But multiple doctors denied there was any medical issue, telling Slice to bring Rose to a psychiatrist instead. “I don’t know how long our pattern of ER visits and outpatient referrals might have continued had I not texted a group of friends that evening to share Rose’s story,” Slice writes. “One friend — a doctor — texted back an idea: “Have you looked into PANS?”

PANS, or “pediatric acute-onset neuropsychiatric syndrome,” is a form of brain inflammation caused by infection that affects an estimated one in around 12,000 children every year. A reliable test for the disease is still elusive, so diagnosis currently hinges on developing sudden-onset OCD or restrictive eating and at least two out of nine concurrent symptoms, which include aggression, motor abnormalities, and sleep changes. But there’s widespread medical skepticism surrounding the condition, and funding for research is sparse.

Splice writes about her fight to treat Rose and speaks to PANS patients and medical experts about their experience with the disease, the struggle to diagnose it, and the vocal community of physicians actively opposing the disease’s recognition: https://nymag.visitlink.me/5FU0Va