WHAT'S HAPPENING

JULY 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

The evidence in the medical literature for the diagnosis and treatment of Chiari malformation and related disorders can be confusing and, at times, completely contradictory. The only way to develop the types of studies and medical evidence necessary to improve Chiari care is by building large-scale, reliable registries of patient data. Dr. Eric Jackson will describe how more effective patient registries might help fill in the gaps that exist in the medical literature for Chiari treatment and– more importantly– how patients and family members, themselves, can make this happen.

On July 8th @7:30pm, Dr. Jackson will discuss why it has been so difficult to develop clear, clinical guidelines for Chiari malformation treatment and introduce a current effort being undertaken by the neurosurgical world to remedy this. Register here.

Dr. David Bauer will go into much further detail about this important effort to reach a better standard of care on July, 29th @7:30pm EST. Register here.

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.

Parent Support Meeting – July 13th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – July 18th @7:30pm ET, hosted by Roman Fenner

Adult Support Meeting – July 20th @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)

Research

Our research projects continue to ramp up this year. On July 7-8, 2021 Bobby Jones CSF will once again attend the 2021 NINDS Nonprofit Forum to stay up-to-date on the national status of neurological disease research and to share our own successes in clinical and patient-centered research.

The International Patient Registry is still recruiting on the new LunaPEER platform. If you have not already, please sign up and take the first survey of 2021. The analysis of the Chiari and POTS survey is being done and we expect it to be ready for dissemination soon. Additionally, a new study is currently being developed for additional research purposes based on your comments and questions, so please keep an eye out!

The 2020 Colloquium Proceedings will be completed by the end of the month and be made available online for purchase in August 2021. Check out previous Colloquia meetings on our website.

Planning also continues for our upcoming clinical research meetings, occurring in August and October 2021. Both the 2021 Think Tankand Colloquium meetings were pushed back to accommodate the experts’ travel capabilities due to the COVID-19 pandemic.

unite@night


We now have 30 walks on the books for this year!
Can you help us to get even more walks on the map 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.

Events

Purchase your tickets or a sponsorship for our “Resort” Casino Night – July 17, 2021 – Staten Island, New York. If you would like to reserve a hotel room, a block of rooms have been reserved for July 16-July 18. Click here for reservations.

Registration now open!…Bobby Jones Classic at Winged Foot on October 25th. Individual and foursome registration is now open. Sponsorships are still available. Visit bobbyjonesclassic.com for more information and to register. Don’t forget to book your room at the Westchester Marriott here! 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.

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

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

Paddleboard Virtual Raffle!

Now through July 27th, buy chances to win a NORTHSTAR PADDLEBOARD, valued at $1,239.Winner does not need to be present. Once you purchase tickets, a text with pictures of your tickets will be sent to you.

Winner will be announced on Facebook Live @9pm ET. Tickets on sale now! Purchase your tickets here.

About the Northstar Paddleboard: The Northstar SUP has been a constant top performer in the High Society Collection. Every feature and accessory you need is included from a plush EVA pad to a front cargo system. This artwork was created by Denver artist Robert Maestas and utilizes a multi step, digital print process resulting in a truly unique piece of outdoor gear with a flawless finish.