IN-PERSON LECTURE

Monday, March 4th – 4:00-6:00pm PT
Stanford Center for Academic Medicine
Meeting Room: Grand Rounds
453 Quarry Rd
Palo Alto, CA 94304

Dr. Cormac Maher, Stanford University
Topic: Update on Chiari

Dr. Xiang Qian, Stanford University
Topic: Pain Treatment in Chiari

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, February 25 @5pm ET

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

**NEW OPPORTUNITY** Idiopathic Intracranial Hypertension: Patient Advisory Committee. If you or your child has ever had idiopathic intracranial hypertension (IIH), sometimes called “pseudotumor cerebri”, there is an exciting new advisory committee forming! This advisory committee will play a major role in developing the actual research plan for a clinical trial that will aim to answer lots of unanswered questions about IIH. The committee will start meeting in either March or April. If you are interested, please contact Kaitlyn.

Chiari Surgical Success Scale. The first-of-its-kind research study continues! The main goal of this study is to develop a tool that doctors can use with patients when they first come into the office to decide if surgery is the best treatment option for them, personally. We’re very excited that our newest partner on this project, Dr. Harter and his team at New York University have officially begun enrolling in this study! Learn more about this project here.

International Patient Registry: The Future. We are in the middle of analyzing more data from the international patient registry. We’re hoping to be able to report back on some of our exciting findings soon! In the meantime, we have big plans for our registry. We are starting a strategic plan process with our SEA Board to best strategize how to bring all our efforts under a single “roof”. A database like the one Bobby Jones CSF is envisioning will finally provide the quality, peer-reviewed research that can allow doctors to give real answers to the families who struggle with these disorders. Even though a bulk of the scientific work will be done by researchers, Bobby Jones CSF wants to ensure that any future database projects remain 100% patient-centered… so we need your help! Tell us what are the most important problems that you think a patient registry and clinical research consortium should address. Let’s make sure the researchers who are studying Chiari, syringomyelia and related disorders are doing research that will actually be able to help families long-term!