BOBBY JONES CSF NEWS

To honor Chiari Awareness Month…

Keep an eye out this month for how you can help Bobby Jones CSF raise awareness and funds for much needed and important CCI (craniocervical instability) research!

SEPTEMBER 2022

Welcome to our 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 lecture will feature Tish Hevel. On Thursday, September 8th at 7:30pm ET, Ms. Hevel, Founder/CEO of The Brain Donor Project, will be speaking on the topic of “Brain Donation to find answers for Chiari Malformation.” REGISTER HERE.

Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org

Support

We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET, for ADULTS every last Tuesday of the month at 7:00pm ET, and for PARENTS and CHILDREN quarterly, on the second Tuesday of the month.*

The Children’s support meetings will take place just prior to the Parent’s meetings, at 6:30pm ET. A parent or caregiver must be present with the child at the children’s meetings. Registration is part of the Parent’s registration (there is an extra question to answer regarding whether you will be attending the child’s meeting at 6:30pm)

Adult Support Meeting – Tuesday, September 27th @7pm

High School/College Support Meeting – Sunday, October 2nd @5pm

Research

Developing a Tool for New FDA-Approved Treatments
The second phase of our project to develop a tool that companies can use to develop FDA-approved treatments faster and more efficiently will be opening soon! The survey in phase 1 is closed.
Make sure you are registered for our long-term Chiari, syringomyelia and related disorders study to be ready when the next phase launches!

 

Chiari Surgical Success Scale
The CSSS project is underway with two sites actively enrolling participants, but last month there were an incredible 29 additional sites who have expressed interest, or who have already sent in paperwork to join this study. We are especially proud that these sites were inclusive of both the traditional academic hospitals as well as private practice clinics. We are hopeful that the inclusion of data from both these types of sites will provide a better picture of what is actually going on in the clinical care of Chiari patients around the country… and around the world! At least 2 of the new sites will be in different countries around the globe.

Events

TopGolf for Bobby Jones CSF
Sunday, September 25, 2022
Holtsville, New York
Join us on September 25th at TopGolf in Holtsville, Long Island, New York. Unlimited game play, open bar, food, a chance to win $10,000 and more! $100 registration fee (register as a team (6 per group) or as an individual. Sponsored by Dr. Catherine Loughin and proceeds will benefit Bobby Jones CSF. Register here.

“Oktoberfest” Dinner Dance for a Cure
Saturday, October 22, 2022
Twinsburg, Ohio
SAVE THE DATE for the 2022 Dinner Dance for a Cure on October 22 – Tickets and sponsorships available soon!

International Night of Light Gala
Thursday, November 17 – Friday, November, 18, 2022
Paris, France
We will be honoring Dr. Richard G. Ellenbogen and Professor Concezio Di Rocco at the Cercle de l’Union Interallie, in Paris, France on Friday, November 18th with a pre-Gala event on November 17th. Purchase tickets, a research sponsorship, or be an event underwriter.

Make sure to secure your hotel room for the Gala. Contact mpoppe@bobbyjonescsf.org.

Bobby Jones Classic
Sunday, March 26 – Monday, March 27, 2023
Atlanta, Georgia
OUR NEW 2023 BOBBY JONES CLASSIC WEBSITE IS NOW LIVE. Secure your playing spots or sponsorships now!

unite@night

The 2022 unite@night events are under way! Thank you so much to everyone who has registered to host or participate in a unite@night event. We are so excited that we have already raised over $80,000 for this year.

Although we have events running through November, take a look at our current top ten:
$31,000 – Boca Raton, FL – Noah Forman
$14,200 – Vero Beach, FL – Tyler Guettler
$6,310 – Chicago, IL – Chelle Cavo & Cathy Poznik
$3,857 – Solo Walks
$3,233 – Harmony the Paintball Hero
$3,005 – Cedar Rapids, IA – Lindsay Bohon
$2,600 – Las Vegas, NV – Michelle Bender
$2,200 – Austin, TX – Kerry Tillery & Misti Hair
$920 – West Grove, PA – Kristin Means
$700 – Charleston, SC – Julianna Weninger & Nancy Feracco

A huge shout out and thank you to the 2022 National unite@night Sponsors: The Mikula Family, The Guettler Family, ENPAC & The Bohon Family. We appreciate you so much!!

Check out all the walk sites at this link: https://bobbyjonescsf.org/unitenight/2022-walk-sites/.

Just look at these cuties modeling this year’s t-shirt!

If there aren’t any walks in your area, you can still be a part of the fun by registering for a solo walk. Just register here. Fundraise at your convenience and you can earn a t-shirt and other recognition prizes, depending on how much you raise. The funds raised from the unite@night walks help fund research, programs that educate, and online support groups.

Shop Amazon and Support Bobby Jones CSF!

Thanks to you for shopping at smile.amazon.com or with AmazonSmile turned on in your Amazon shopping app! Your everyday purchases have generated over $10,000 in donations to Bobby Jones CSF!!

Shop right now through the link below and AmazonSmile will donate a portion of your proceeds back to Bobby Jones CSF at no additional cost! You can do good just by purchasing items you already need!

 

If you remember to go to AmazonSmile first, every time you shop, that’s awesome! For most people, the best thing to do is add a browser extension that automatically redirects you.

For Google Chrome, check out Smile Always.

For Firefox, check out Smile Redirect.

For Safari, check out KeepOnSmiling. These extensions will automatically redirect you to your smile.amazon.com page every time, so you will never need to remember to go to smile.amazon.com first!