Hey Tennessee! Check out our upcoming cornhole tourney, cookout and football watching party in THIS SATURDAY! NOTE that you MUST register in order to participate in the cookout - igfn.us/vf/23covington… #unite4answers #advocacy #chiari #tennesseesupport #cornhole #football

Richmond! If you haven't already, register for this weekend's #unite4answers walk; run by Secretary of the BJCSF Board of Directors, Pam Fenner! Register: igfn.us/vf/23richmondva . . . #support #chiari #advocacy #localsupport

Missed our last Ask the Expert featuring Dr. Grant? View it here! youtu.be/NvJfz9BC1IA

Have you heard the latest episode from The Chiari Champion podcast on Empowerment? Check it out wherever you listen to your favorite podcasts! . . . #chiaripodcast #chiari #chiariawareness #chronicillnesspodcast

Georgia! Come hang out with us for our walk in Acworth this Friday! Register or support HERE: fundraise.givesmart.com/form/dWhJmA?vi…

‼️URGENT PATIENT REGISTRY UPDATE‼️ We received news that our current registry platform is closing. In order to be included in our initial research results, you MUST send us your "Participant Code" by Jan. 26th! 👉Log in to the registry to find your Code: member.lunadna.com

We're BACK! We are thrilled to announce that we will be playing the newly renovated East Lake on March 24th and we invite YOU to join us! Register HERE for the Bobby Jones Classic - bobbyjonesclassic.com

Want to make a real impact but don't know where to begin?🤔 Check out our FREE advocacy training! Led by Julie Rauch, BCPA, this course builds your skills & confidence. Attending the 2025 Summit? Prep for your meetings with officials! #Advocacy #Empowerment #CommunityAction

Feeling nervous about advocacy? Our FREE training begins with Module 1: Understanding Advocacy! It's the best place to start feeling prepared. Watch Module 1 now: vimeo.com/1085761234

Can't wait to see U-tah!😉 🔵Register: igfn.us/form/3uM_Hg 🧠Learn more, visit: bobbyjonescsf.org/csf-events/uta…

Module 2 of our FREE advocacy training just dropped! Learn how to track legislation to stay informed & empowered. 👇 Watch and learn more: bobbyjonescsf.org/i-am-patient/a…

Ready to truly move people with your #advocacy? Module 3 teaches you how to craft your powerful personal message for impact. Amplify your voice: bobbyjonescsf.org/i-am-patient/a…

5 steps to advocacy that works: Problem, Impact, Personal Story, Solution, Ask. 📣 Learn how to craft a message that gets results! Watch Module 3 in our advocacy training series: vimeo.com/1088823936

Nervous about meeting with your elected officials? Module 4 of our advocacy prep course guides you through structuring & conducting impactful advocacy meetings. Handle tough questions & drive change: bobbyjonescsf.org/i-am-patient/a…

We want to hear patients & families with Chiari, syringomyelia, Ehlers-Danlos Syndrome, and associated co-morbidities who rely on Medicaid. Your response will help us when we go to Capitol Hill this weekend to highlight the real impact of proposed cuts: form.jotform.com/251726284098162

We are so excited to get this weekend rolling! Welcome to #TogetherWeThrive25 Summit! Ready to learn, connect and advocate!

Looking forward to our first lecture Children's Hospital of Philadelphia! fundraise.givesmart.com/form/YMMIFA?vi… #chiarimalformation #education #patientsupport #caregiversupport

Your voice is needed! The second phase of our patient research and clinician-engagement prioritization project is live. Please take a few minutes to rank what matters most to you and help shape our upcoming plans: bjcsf.digitalcabinet.org #PatientAdvocacy #Research