WHAT'S HAPPENING

APRIL 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. Catherine Loughin and Dr. Aruna Rao.

Dr. Catherine Loughin will join us on April 22nd at 7:30 PM ET. Dr. Loughin, veterinary surgeon on Long Island Veterinary Specialists gives a short lecture and answers your questions on Chiari, Tethered Cord and EDS in Dogs and Cats. Certain breeds are more prone to Chiari Malformation due to skull shape but what about disorders related to Chiari? What are the symptoms? Is there a treatment for our furry friends? Ask Dr. Loughin. Register here.

Dr. Aruna Rao will be speaking on April 29th at 7:30 PM EST on the topic of Headache, Sleep Disorders and CSF Disorders. Register here.

Send your questions to us in advance or log on with us virtually and ask them live!

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 – April 13th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

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

Adult Support Meeting – April 27th @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)

Research

The data from the Upright Intolerance Survey are being analyzed right now. We are looking forward to the results from this study, so stay tuned!

The new LunaPEER system is also up and running! If you were previously in our International Patient Registry system, you should have received an email to create a new account in the new system. Please contact Kaitlyn if you haven’t seen it. If you are not already registered for this registry, get started today!

We are hoping to wrap up our first study of 2021 by the fall. Make sure you complete the survey to let us know if telehealth is useful in your care plan for Chiari or syringomyelia.

unite@night

Making our way across the country!

INTRODUCING THE 2021 UNITE@NIGHT WALK RECOGNITION PRIZES

You can be part of the walks in a few different ways, in order to earn these prizes…

To be Chairperson of an in-person or virtual walk with your own online campaign fundraising module, please register here and we will be in touch with you to complete the details: https://give.classy.org/2021unitenightchair

To register as a solo walker to raise funds and earn prizes, please register here: https://give.classy.org/solo_virtual21

This year, unite@night walks will run from August until November! These events, held in different locations around the country, bring together people who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome, Dysautonomia and other related disorders. They also help to foster local support networks and to support medical research, national education efforts and ongoing awareness projects that benefit families in the United States and abroad who suffer every single day from these disorders.

CLICK HERE AND CHECK OUT THE SPONSORSHIP BENEFITS INCLUDING… Company/family name and/or logo on nationally distributed T-shirts

Thank you to those who have already generously sponsored the 2021 unite@night events…we hope to add your name/company to this list! *Deadline to be included on t-shirt is 6.1.2020.

Help us unlock the answers. Each step you take, no matter how difficult, brings hope to patients and their loved ones. Be the key to a cure.

Feel free to contact Cathy at (330) 573-5560 or cpoznik@bobbyjonescsf.org to help set up your vision for your walk and for more information about sponsorships.

Events

The Bobby Jones Classic was held on March 28-29 in Atlanta, Georgia at East Lake Golf Club. Read the recap here.

Announcing our NEW Bobby Jones Classic tournament, to be held at Winged Foot Golf Club on October 25th. Join us at the place where Bobby Jones won the 1929 US Open! More information.

Upcoming events…

“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