WHAT'S HAPPENING

FEBRUARY 2021

Welcome to our updated News page! Every month, we will share important, interesting or newsworthy information about what’s happening with Bobby Jones CSF and what we feel you may want to know! Learn about our programs, upcoming educational and fundraising events, virtual support group & Ask the Expert meetings and research projects. We look forward to sharing it all with you!

Education

This month, our Ask the Expert series will feature Dr. Olivier Baledent and Dr. Vijay Ravindra. Also, join us at the Chiari Roundtable from Seattle Children’s Hospital.

On February 3rd, a Chiari Malformations Roundtable – Live Webinar, hosted by Dr. Ellenbogen with Seattle Children’s Hospital, will feature keynote speaker, Dr. Gerald Grant, and our very own Executive Director, Dorothy Poppe. The webinar will take place on Wednesday, February 3rd @5:00pm PT.

A very special afternoon Q&A will take place at 12:30pm ET on February 11th. Dr. Olivier Baledent, PhD in the area of biophysics & radiology, is currently Assistant Professor at Amiens University Hospital in France. He is heading the medical image processing department and will be presenting and answering your questions on Blood Flow and Cerebrospinal Fluid from France!

Pediatric neurosurgeon, Dr. Vijay Ravindra will join us on February 18th @7:30pm ET for our Virtual Q&A. Dr. Ravindra is the recipient of the 2020 Chiari Award, funded by Bobby Jones CSF and awarded by the joint sections of the AANS and the CNS. His research interests involve the biomechanics of Chiari malformation and disorders of the craniocervical junction.

Send your questions to us in advance or log on with us virtually and ask them live! For more information visit: bobbyjonescsf.org/Events.

Support

In an effort to stay connected, our monthly virtual support groups will continue into 2021. We hold a support meeting for PARENTS every second Tuesday of the month at 7:00pm ET, ADULTS every last Tuesday of the month at 7:00pm ET, and HIGH SCHOOL/COLLEGE-age usually every third Sunday of the month at 7:30pm ET. See this month’s schedule below and join us!

Parent Support Meeting – February 9th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – February 14th @7:30pm ET, hosted by Roman Fenner

Adult Support Meeting – February 23rd @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)

Research

Exciting news in Chiari genetics! Scientists at Washington University in St. Louis think they have found unique genes that might indicate a patient has Chiari malformation. The team believes that finding certain de novo mutations (or mutations that occur for the first time in a family line) in some CHD genes may be a good way to tell if a person will have Chiari malformation. Mutations in these genes have been associated with other disorders like developmental delays– which probably makes sense to any Chiari patient who has experienced cognitive issues. These genes have also been associated with things like microcephaly, which also makes sense because it is a disorder where the skull is too small; in Chiari, the back of the posterior fossa is thought to be too small. These findings are thought to be “statistically significant”, which means that there is a really good chance that these findings are real and not due to chance.

This is made all the more exciting because YOU made it happen! At previous Bobby Jones CSF educational lectures and online, you were invited to participate in this genetics study. And thank goodness you did, because these breakthroughs would not be possible without your participation.

Want to contribute to more genetics research in Chiari? Join the International Patient Registry! If you have ever used 23&Me, Ancestry.com or a similar genetics company, you can actually contribute those reports. This gives scientists more information on what Chiari patients might share in common! Join the registry and complete the first survey of 2021 while you’re at it!

unite@night

Making our way across the country!


Help us fill up this map for 2021… virtual, in-person, and solo walk options available – whichever option allows you to stay safe while having fun.

Register here:  https://bobbyjonescsf.org/unitenight

Thank you to all chairperson who have already registered!

Events

The Bobby Jones Classic is our first event of 2021! The tournament will take place on March 28-29 at East Lake Golf Club in Atlanta, Georgia and will strive to honor, celebrate and exemplify the life and legacy of Bobby Jones. Limited to 100 golfers, the event’s activities will include a welcome dinner, on Sunday evening, at the Whitley Atlanta Buckhead. Monday’s activities will include a full day of golf, followed by an Alexa Stirling putting challenge, cocktails, and an awards reception. Due to the everchanging COVID-19 restrictions, we are working to provide a safe and enjoyable tournament.

Proceeds from this event will benefit Bobby Jones CSF’s several medical, scientific and community initiatives including our international patient registry to help physicians to better study the causes of and diagnose Chiari malformation, syringomyelia and related disorders. For more information or to register, visit the Bobby Jones Classic website.

Save the Date for our other upcoming events…

Casino Night – July 17, 2021 – Staten Island, New York

Dinner Dance for a Cure – October 23, 2021 – Twinsburg, Ohio

International Night of Light Gala – November 20, 2021 – Washington, DC