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v2.5 StablePikory 2026
bobbyjonescsf

@bobbyjonescsf

Public Profile

Bobby Jones CSF

Followers
1,513
Following
840
Posts
519

Advancing knowledge through research and educating about #ChiariMalformation, #syringomyelia and related disorders.

Impact Score
79.3

Top 5% Globally

Profile Stats
Anonymous Browsing Active

Content Insights

Avg. Engagement0.80%
Post Frequency2.1 / wk
Audience HealthModerate
VisibilityPublic
Found 12 posts
bobbyjonescsf post - Find strength in sharing💪 Have you ever wanted to share your story but you wer
6/3/2026
bobbyjonescsf post - CHICAGO! Walk Impact Field with us on JULY 31st 🚶🏽‍♀️ $35 TICKET INCLUDES: -
1
6/1/2026
bobbyjonescsf post - Tools to help you thrive🛠 Practical strategies, communication tips, survival k
3
5/30/2026
bobbyjonescsf post - 📖must r(E)a(DS)! Holding It All Together by patient advocate Christie Cox A
6
5/29/2026
bobbyjonescsf post - 📖Add this one to the "must r(E)a(DS)" list - Speranza: How Pain Became the Pa
6
1
5/28/2026
bobbyjonescsf post - PUBLISHED📝 In 2015, Bobby Jones CSF SEA Board Vice President Dr. David Limbric
31
1
5/28/2026
bobbyjonescsf post - If you’re living with Ehlers-Danlos Syndrome, syringomyelia, or related conditio
3
5/26/2026
bobbyjonescsf post - This Wednesday, May 27th, log on with Christie Cox, best-selling author and pati
2
5/25/2026
bobbyjonescsf post - 📈As SO many of you have already expressed, symptoms, flares, and triggers can b
4
5/22/2026
bobbyjonescsf post - FATIGUE alongside these conditions can lead to post-exertional symptom exacerbat
13
5/22/2026
bobbyjonescsf post - ⛈Many patients report that their symptoms worsen with changes in weather. In con
57
14
5/20/2026
bobbyjonescsf post - Navigating chronic illness is not only exhausting and painful, but isolating. So
3
5/20/2026

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