Insights for this page were created by volunteer Christie Cox – creator of the resourceful site for people with complex conditions like Ehlers-Danlos syndrome at EDSJointEffort.com and author of the book Holding it All Together When You’re Hypermobile.
Every September, we celebrate Chiari Awareness month to spread knowledge and credible medical content to educate patients looking for resources for this challenging condition. To honor the special occasion meaningfully for our community, we want to start with what matters most to you. We believe that begins with an understanding of what Chiari is.
Learn more about Chiari malformation
This month, we will highlight a series of articles on topics often left unsaid including how to better support the people who are the powerful and often under-appreciated Chiari caregivers. We will also include insights on how to support both pediatric and adult patients and share an exposé on what Bobby Jones CSF is doing to support medical research for Chiari.
When Chiari Hits Close to Home: How to Care for Your Loved One and Yourself
Christie Cox
When the Patient is a Child
Christie Cox
The Adult Patient Story We Don’t Tell Enough
Christie Cox
Research Is More Than Discovery—It’s Hope in the Making
Christie Cox
Caregivers
Being part of the foundation and connecting with other families have given us the strength to remain positive despite many setbacks.” Bobby Jones CSF Board Member Pam Fenner and her husband are quoted in this amazing article from Brain & Life magazine. Read advice for caregivers in the Brain & Life article here.
Care giving is hard. It’s even harder when you’re a patient yourself. Watch Molly Griggs, Operations & Patient Science Coordinator at the Norris Lab at MUSC, describe what it feels like to be just that. Caregivers, take a deep breath and watch here.
Take a 5 minute survey and help us plan 5-year’s worth of priorities for research and clinical engagement. You’ll be helping to ensure that our work stays focused on the issues that truly impact your loved ones. Click here and select “Sign Up” to get started.
Pediatrics
Adults are not the only ones who may experience anxiety. We are learning so much about the mind-body connection, and even more about what it might mean for patients with Chiari and related disorders! We hosted an online event with our friends at Washington University in St. Louis on 9/16!
Missed it live? Watch the recording here and learn all about how anxiety affects the brain and leave with practical tools to manage it!
Sometimes, you just need a color break. Download, print, and color some of our Chiari Csoloring Pages.
Watch this video to learn more about trauma-informed psychological care from our recent Together We Thrive conference.
Often times, kiddos with Chiari need to miss school because of pain, doctors appointments, and surgical treatments. Check out this video and other resources we’ve collected to make Chiari @ school a little bit easier for parents, teachers, and, of course, our kids (of all ages).
Adults
Dr. Cortney Gensemer, from the Norris Lab, is both an EDS and Chiari patient, diagnosed as a young adult. Listen here to the Patient Science Panel from the Together We Thrive Patient Conference featuring three incredible patient scientists and their experiences with the Norris Lab.
Brain fog is one of the more commonly reported symptoms in adult Chiari patients. Dr. Philip Allen gives a fantastic overview of his ongoing work, specifically on how cognitive dysfunction and something some patients call “brain fog” is measured in adult patients with Chiari malformation. Though a common symptom, and one that medical professionals have been trying to pin down for some time, it is still a topic they are researching and learning about relieving to this day. Listen here.
Dr. Victoria Felix shows us how situations naturally impact our thoughts, emotions, and behaviors and explains how Cognitive Behavioral Therapy (CBT) can help us manage those situations of “suffering” to increase quality of life. Check out her presentation from our 2023 Unite@theHill Wellness Seminar.
Research
The Norris Lab has been working on answering important questions that can be game changers for the EDS and related disorders communities. Learn more about the studies here.
The annual BJCSF-sponsored award for excellence in Chiari, syringomyelia and related disorder research is awarded each year to a young investigator or clinician in-training. Congratulations to this year’s winner, Dr. Kelsi Chesney! Dr. Chesney is a resident at Children’s National Hospital in DC and you can watch her amazing presentation from our recent Think Tank meeting here.
The Bobby Jones Chiari & Syringomyelia Foundation and The Monkton Institute are continually proud to co-sponsor the International CSF Hydrodynamics Symposium. This symposium is an international meeting consisting of engineers, bioengineers and mathematicians. Researchers come together to discuss the current theories on pathology of various cerebrospinal fluid (CSF) disorders including Chiari malformation, syringomyelia, hydrocephalus and others. Check out the past lectures from this biennial meeting featuring experts from all around the globe.
How can you help? We’ve launched the second part of our project to get input from patients, and we need your help to plan our next five years of research. By taking a few minutes to share what’s most important to you, you’ll help us directly improve the lives of our community. Join us in shaping the future here.
