VIRTUAL ASK-THE-EXPERT

Thursday, August 29th – 7:30pm ET
Expert: Dr. Kristen Yeom, Pediatric Neuroradiologist, Pheonix Children’s Hospital
Topic: TBA

REGISTER HERE

Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org

Are you looking for support but maybe aren’t ready for a face-to-face group meeting yet? Maybe the timing of the meetings aren’t good for you? You can join our online support group on Inspire.com – Chiari & Syringomyelia Unite.

We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET and for ADULTS & CAREGIVERS every last Tuesday of the month at 7:00pm ET.

High School/College Support Meeting – Sunday, August 25, 2024 @ 5pm ET

Adult & Caregiver Support Meeting – Tuesday, August 27, 2024 @7pm ET

Chiari Surgical Success Scale
We are still moving forward with the CSSS study! An incredible number of patients have already been screened: more than 1,200! Over 78% of the eligible patients have chosen to enroll in this study and just under a quarter of the enrolled participants have already completed all data collection.

We are planning to host a virtual session in the coming month or so to talk more about this study and what it means for patients in the future. Stay tuned! You can learn more about the study in the meantime on our website.

BJCSF Patient-Centered Research Plan
We are in the process of developing 5-year Research Priority Areas for our disease registry and research priorities. We’re preparing to incorporate more academic centers in this work, but we want to ensure the registry’s research areas are developed specifically from patient and caregiver perspectives. We need family members impacted by these disorders to speak to the issues that matter most to them. We have already invited some individuals to participate in this process directly!

…if you want to be a part of this process, you have to contact Kaitlyn immediately. There are very limited spots available to work on this project and they are almost filled!

Planning our next research meetings
We are also planning our annual BJCSF Research Colloquium for next month! Some of the presentations at this year’s meeting are listed below– we have interesting topics in various disciplines of clinical care for Chiari and related disorders (neurosurgery, genetics, radiology, and more!):

Chiari Malformation Clinical Guidelines – Reviews
Dr. David Bauer, Dr. Eric Jackson, Dr. Jogi Pattisapu (Neurosurgery)

Imaging Chiari I Malformation: Brain, Fluid, Motion… What Next?
Dr. Kristin Yeom (Neuroradiology)

Human genetics and molecular genomics of Chiari malformation
Dr. Kristopher Kahle (Neurosurgery, Genetics, Molecular Biology)

Dr. Yeom is a neuroradiologist who will also be hosting a virtual Ask the Expert at the end of this month. Register for that one early and bring your burning radiology/MRI questions!

You can learn more about previous Colloquia on our website.

Last chance to help write governmental rules and regulations!
The National Institutes of Health (NIH) have opened a public comment period to hear from you! Governmental agencies like NIH open public comment periods when they are getting ready to write new, important rules to enact a law. Your participation in this public comment period can help shape those rules!

NIH wants to learn exactly how patients, advocates, community leaders and other researchers actually want to be engaged in research. What could researchers do that would make you and the people you love want to get involved? Are there any things that would make you less likely to be involved? There are 5 short paragraph questions on their form. You don’t need to answer all of them. You can even choose to answer only those questions that you are particularly passionate about! All of your comments are valuable to rule-making!

Responses are due tomorrow August 14th: https://bit.ly/3RMfZm2