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!
Please consider supporting our 2024 Annual Fund to keep all of our important initiatives moving forward. Donate here.
We can’t do it without you!
Every dollar you donate is put to work exponentially. These pages highlight the work your donations have made possible!
IN-PERSON LECTURE
MONDAY, JULY 15TH
6:00-7:30pm
St. Louis Children’s Hospital
One Childrens Place
3rd Floor Auditorium
St. Louis, MO 63110
Taking Charge: Navigating life with your Chronic Condition
Expert Speaker: Dr. Jarod Roland, Neurosurgeon at Washington University, St. Louis Children’s Hospital
Topic: What we know about Chiari & neuroimaging research
Expert Speaker: Anna Corbitt, Advancement Manager at Paraquad
Topic: Equity and independence for people with disabilities
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IN-PERSON LECTURE
WEDNESDAY, JULY 24TH
5:00 p.m. Patient to patient discussion group
6:00 p.m. Break
6:30 p.m. Lecture
Medical University of South Carolina
68 President Street
Bioengineering Building, Room 112
Charleston, SC 29403
Expert Speaker: Dr. Michelle Nichols, PhD, RN
Patient Speaker: Gretchen Jongekryg
Topic: TBA
Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org
Are you looking for support but maybe aren’t ready for a face-to-face group meeting yet? Maybe the timing of the meetings aren’t good for you? You can join our online support group on Inspire.com – Chiari & Syringomyelia Unite.
We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET and for ADULTS & CAREGIVERS every last Tuesday of the month at 7:00pm ET.
Adult & Caregiver Support Meeting – Tuesday, July 23 @ 7pm ET
High School/College Support Meeting – Sunday, July 28 @5pm ET
How do you want to be engaged in medical research? The National Institutes of Health (NIH) have opened a public comment period… and they want to hear from you! Governmental agencies like NIH open public comment periods when they are getting ready to write and implement new, important rules and regulations. Your participation in this public comment period can help shape those rules!
NIH is looking to learn how patients, advocates, community leaders and other researchers actually want to be engaged in research. What could a research study do that would make you and the people you love want to get involved? Are there any things that would make you less likely to be involved? There are 5 long-form response questions on their form. You only need to answer as many questions as you want. You can skip any that make you unsure or uncomfortable. You can also choose to just focus on questions that are in areas that you are particularly passionate about! Any comments are valuable to rule-making.
Responses are due no later than August 14th, so feel free to get started here: https://bit.ly/3RMfZm2
NINDS Nonprofit Forum. We are also very excited to be attending the annual NINDS Nonprofit Forum at the NIH campus later this month. In addition to completing the survey above, we fully intend to bring the perspectives of patients and families living with Chiari, syringomyelia and related disorders directly to this meeting as we bring our research vision to the NIH!
unite4answers is a collection of fundraising events around the country to help fund medical research and education programs that foster better answers. These events bring people together who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome and related disorders. You can read more about unite4answers here.
Check out the current lineup for the 2024 unite4answers events here. If you are interested in helping out but cannot put together an in-person event, please consider participating in a solo walk. Just complete this form and select solo walk from the drop-down menu. A customized fundraising link will be sent to you that you can share with family and friends. AND you can earn a t-shirt and other incentive prizes based on what you raise! See attached incentive prizes here.
A huge shout out and thank you to the 2024 unite4answers National Sponsors. We appreciate your commitment to help make a difference for the millions of families affected by these disorders.
We would love to have event attendees send in the unite4answers coloring pages. Feel free to download the pages here and make sure to send in a copy so we can add them to the Facebook Bobby Jones CSF coloring book photo album.
If you are interested in helping out and cannot put together an in-person group event, please consider participating in a solo walk. Just complete the information here and indicate “solo walk” in the comments section of the form. A customized fundraising link will be sent to you that you can share with family and friends. You can also earn the 2024 t-shirt and other incentive prizes based on what you raise. See incentive prizes here.
Bobby Jones CSF is committed to helping the over 3.5 million people in the United States, and my more worldwide, who are living with Chiari malformation, syringomyelia, and related disorders. Our fundraising supports the organization’s critical research initiatives and provides comprehensive support services and educational programs to everyone affected by these disorders. Join us at an event near you!
Friday-Sunday, July 19-21
Mt. Pleasant Open
Register or sponsor
Patriots Point Links
Mount Pleasant, South Carolina
Sunday-Monday, September 8 & 9
Bobby Jones Classic at Sea Island
More information and register here
Sea Island Resort
St. Simons Island, Georgia
Saturday, October 19
Dinner Dance for a Cure
Purchase tickets, sponsorship, or journal ad here
Hilton Garden Inn
Twinsburg, Ohio
Saturday, November 23
International Night of Light Gala
Purchase tickets, sponsorship, or journal ad here
Sunset Club
Seattle, Washington
