JUNE 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!


We have heard from experts about what Chiari is, how it is diagnosed and surgical treatment options but what happens when surgery does not necessarily improve symptoms? Dr. John Oró joins us to discuss What Can be Done if Symptoms Continue after Surgery on June 3rd at 7:30 PM EST. Register here.

Check out how researcher’s and neurosurgeon’s work collide for better diagnosis and treatment! Engineer, Dr. Bryn Martin and neurosurgeon, Dr. Mark Luciano, discuss: Perspectives on Chiari Biomarkers from a Bioengineering and Neurosurgical Viewpoint. Join us on June 24th at 7:30 PM EST. Register here.


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.

Parent Support Meeting – June 1st @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – June 13th @7:30pm ET, hosted by Roman Fenner

Adult Support Meeting – June 22nd @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)


This online round table will bring together experts, practitioners, and people touched by hydrocephalus to discuss the challenges, solutions, and paths forward for improving care for patients with normal pressure hydrocephalus. This event will be the official grand opening of a new EU funded project on Normal Pressure Hydrocephalus (NPH) termed Reversible Dementia – REVERT.

To register and gain access to this free event please go to: https://revertproject.org/event/.  

REVERT is a collaborative UK-France project funded by Interreg France (Channel) England, led by the University of Cambridge in a strong partnership with the University of Picardie Jules Verne, along with six other academic, clinical and industry partners.

For more details see https://revertproject.org.


We are looking for 24 more walk sites for 2021
. Can you help us out by doing a solo walk, virtual walk or in-person walk? Contact Cathy Poznik at cpoznik@bobbyjonescsf.org or (330) 573-5560 for more information.

Please consider joining the amazing team to help make a difference. To be a chairperson of an in-person walk or virtual walk with your own campaign fundraising module created, please register here and we will be in touch with you to complete the details: https://give.classy.org/2021unitenightchair.


Bridget Higgins – Anniston, Alabama

Amber Waybright – Bakersfield, California

Lindsay Bohon – Cedar Rapids, Iowa

Chelle Cavo – Chicago, Illinois

Jerri Walston – Mt. Carmel, Illinois

Hope Ray – Evansville, Indiana

Christy Schmidt – Parchment, Michigan

Michelle Wines – Weaverville, North Carolina

Mary Scheidel – Bedford, New Hampshire

Anne Michaelson – Long Beach Township, New Jersey

Rachel Fisher – Batavia, New York

Catherine Loughin – Huntington, New York

Cathy Poznik – Twinsburg, Ohio

Kia Brothers – Oklahoma City, Oklahoma

Colette Wintersteen – Bloomsburg, Pennsylvania

Kristin Means – West Grove, Pennsylvania

Julianna Weninger – Charleston, South Carolina

Linda Cummings – Dallas/Ft. Worth, Texas

Misti Hair – Lockhart, Texas

Jacqlyn Murphy – New Boston, Texas

Nicole Maris – Poth, Texas

Kaitlyn White – Temple, Texas

Pamela Fenner – Richmond, Virginia

Sally Roberts – Bethel, Vermont

Nicole Lewis – Crandon, Wisconsin

Bridget Duffy – Madison, Wisconsin


Registration now open!…
Bobby Jones Classic at Winged Foot Individual & Foursome Registration is now open for the Bobby Jones Classic at Winged Foot.  Sponsorships are still available: bobbyjonesclassic.com. For more information contact Mary Poppe at mpoppe@bobbyjonescsf.org.

It’s that time again! The 9th Annual Mount Pleasant Charity Open from August 6-8, with proceeds benefiting the Bobby Jones Chiari & Syringomyelia Foundation! Register here.

“Resort” Casino Night – July 17, 2021 – Staten Island, New York

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

Bobby Jones Classic at Winged Foot – October 25, 2021 – Mamaroneck, New York. More info or register here.

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