We were lucky to have fellow zebra @karinasturm.bsky.social at the helm of our media team the last seven years.
She's one to follow, as an emerging filmmaker, journalist and disability advocate. Rock on, friend. We owe you! #EDS
A square thank-you graphic with a teal-blue background, a central white panel bordered in gold glitter, and a circular portrait photo at the top of the panel. The portrait shows Karina Sturm, an adult woman with light skin and very short dark hair, wearing a dangling leaf-shaped earring, looking slightly to the right with a neutral expression. Text and visible elements: Top left logo: “EDS Awareness” and smaller text “Ehlers-Danlos Syndromes” Curved text across the top: “Thank You Karina Sturm!” Center text: “For your YEARS of dedicated service to CPP as our former Editor-In-Chief and much more!” Large text near bottom of panel: “Happy Trails!” Bottom website: “www.chronicpainpartners.com” Decorations: Top right: a smiling yellow face with three red hearts Left and right sides: red heart icons Left and right sides: lit torch illustrations Bottom left and bottom right: zebra illustrations (lying down)
A Thank You to Karina Sturm for Her Leadership at Chronic Pain Partners
www.chronicpainpartners.com/a-thank-you-...
#EDS #hEDS #HSD #EhlersDanlosSyndrome #Journalism #Film #advocacy #Disability #zebras
It will also be on Apple TV starting May 19th for the win! 🙌✌️
Colorful promotional graphic for a podcast or video episode. At the top, bold pink text reads "MEDICALLY COMPLICATED CHILDREN". Below is a large pale yellow number 2, part of a swirling design filling the background. The main focus is the prominent "EDS UNPLUGGED" logo in black and yellow, with two images of black women in black athletic wear: one holding a megaphone, another triumphantly holding up crutches. To the right, a smaller text says "sponsored by EDS Awareness Ehlers-Danlos Syndromes" with the organization’s logo. At the bottom right, there is Donna Sullivan, a woman with brown hair, wearing glasses on her head, smiling and sitting with her arms resting on a giraffe-patterned cushion. Pink text reads "DONNA SULLIVAN" with an oversized black ampersand beside it. The overall design is lively and emphasizes awareness and support for medically complicated children and Ehlers-Danlos syndromes.
EDS Unplugged podcast Episode 2: Medically Complex Children - interview with Donna Sullivan, producer of COMPLICATED
www.chronicpainpartners.com/episode-2-me...
#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #NEISVoid #Disability #Medicine #FII #MedicalKidnap #Doctors #MedSky
Promo graphic for an “EDS Awareness Month” virtual watch party and post-film discussion, featuring a large movie poster in the center and three photos of people on the right. Left side text: EDS Awareness Presents EDS AWARENESS MONTH VIRTUAL WATCH PARTY & POST FILM DISCUSSION with families from the film Saturday, May 2nd 2:00 - 4:00 pm US EST Tickets Are Limited $3 Co-Sponsored by CTC Connective Tissue Coalition Center movie poster text: “A heartbreaking wake-up call” “An amazing piece of storytelling” WHEN HELP TURNS TO HARM COMPLICATED ComplicatedTheMovie.com Right side photos: Top: A light-skinned young person with glasses, seated and holding a small light-colored animal. Middle: A dark-skinned woman facing forward. Bottom: Two light-skinned people close together; one has a neck brace and bright reddish hair on top.
Catch a special EDS Awareness Month online screening of the film COMPLICATED including post-show discussion with families from the film Sat May 2nd 2-4pm EST just $3 USD:
www.eventbrite.com/e/join-our-s...
#EDS #hEDS #HSD #FII #MedicalKidnap #Doctors #MedX #MedSky #Zebras #NEISvoid #Film
💐💔💔💔💐 What a mensch. 🫂
“After 14yrs of walking #alone,
this flood of #support felt surreal
like stepping into warm water
after yrs of winter cold.
They say
“This is normal.
This is how care is meant to be.”
It still feels strange.
Beautifully strange.”: buff.ly/88SnqSr
via @cppedsa.bsky.social
The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025
buff.ly/UPemeY6
#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon
Our interview with Jen Kain about her new EDS doc “Exhausted Existence”:
buff.ly/NOlO8U7
#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Documentary #Medicine #Doctors #NEISvoid #Film #MedTwitter #MedSky
A memorial-style poster on a teal background with white text, two white doves holding olive branches, a crying zebra illustration, and a photo of two people standing together at an indoor event. Text on the poster says: EDS Awareness Ehlers-Danlos Syndromes Remembering EDS champion: Dr. Grahame 1932 - 2026 chronicpainpartners.com In the photo, Dr. Grahame, an older light-skinned man with short gray hair and glasses is wearing a light beige jacket over a blue striped shirt. Next to him is Jan Groh, a light-skinned woman with short dark hair and glasses wearing a patterned dress and a scarf, with visible forearm supports/braces and a blue-handled mobility aid. Two small candle illustrations appear near the bottom corners.
Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)
www.chronicpainpartners.com/remembering-...
#EDS #EhlersDanlosSyndrome #hEDS #HSD #Zebras #Medicine #Doctors #NEISvoid
A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.
EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors
buff.ly/9sZKVdD
#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky
"Everything hit me at once: the freedom others enjoy, the #loss of my autonomy, the rigidity of a #life ruled by symptoms. My thoughts & reality were so different, it was like we no longer spoke the same language.": buff.ly/1O8RBle
via @cppedsa.bsky.social
#NEisVoid #disability #ChronicIllness #EDS
Promotional graphic for an EDS Awareness blog post on an orange background with a large photo and text blocks. At the top left, a white rounded rectangle says “New Blog Post.” At top right a circular logo reads “EDS Awareness” and“Ehlers-Danlos Syndromes.” In the central photo, a group of people are walking outdoors on a stone-paved area in front of a large building with tall stone columns and doors. Several people are carrying cardboard boxes. One person is seated in a wheelchair holding a box. Main headline below photo: “Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use”. Body text: “Run Away, Netflix’s latest Harlan Coben adaptation has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user.” At bottom left is a rounded button that says “Read More” with a right-pointing arrow icon. Website text at the bottom :“www.chronicpainpartners.com”
Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use
www.chronicpainpartners.com/netflixs-run...
#EDS #hEDS #HSD #Zebras #Spoonies #Disability #DisCo #MedSky #MedX
💔💔💔
Teal blue square graphic about EDS Awareness features a large black and white zebra striped looped awareness ribbon upper left. "EDS Awareness Month" in orange text over that. A graphic of a party horn or favor emitting sparks and stars. A text bubble reads "We have lots of ways to celebrate EDS Awareness!" in teal on white. A white circular logo bottom right reads: "EDS Awareness" and "Ehlers-Danlos Syndromes". Bottom black text reads: www.chronicpainpartners.com
We've got 22 Ways to Celebrate EDS Awareness Month in May! See if one or two suit you:
buff.ly/bhtQQQ2
#EDSAwareness #EDS #hEDS #Hypermobility #HSD #MedEd #Zebras #NEISvoid #Doctors #MedX #Spoonies
A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.
EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors
buff.ly/9sZKVdD
#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky
Missed our prior newsletters? You can catch up on all of them here in our archives, any time you like:
buff.ly/SOlLwKE
#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #NEISvoid #Doctors #MedEd #Medicine #POTS #MCAS #Dysautonomia #Genetics #MedSky
Our interview with Jen Kain about her new EDS doc “Exhausted Existence”:
buff.ly/NOlO8U7
#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Documentary #Medicine #Doctors #NEISvoid #Film #MedTwitter #MedSky
A promotional graphic for EDS (Ehlers-Danlos Syndromes) awareness about head and neck research. The design has a teal background with white text and several images: an X-ray of a neck with orange measurement lines and arrows, a medical spine model being pointed at with a pen, and an illustration of a woman shrugging with palms up. Yellow question-mark icons appear on the left and right. Text shown: EDS Awareness Ehlers-Danlos Syndromes Measuring the unmeasured... What two new studies say about the head, neck and hEDS Some results may be unexpected.... www.chronicpainpartners.com
Measuring the Unmeasured - What Two New Studies Say About the Head, Neck, and hEDS
buff.ly/niK7jRw
#EDS #hEDS #Zebras #CCI #Medicine #MedSky
The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025
buff.ly/UPemeY6
#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon
Promotional graphic for an EDS Awareness blog post on an orange background with a large photo and text blocks. At the top left, a white rounded rectangle says “New Blog Post.” At top right a circular logo reads “EDS Awareness” and“Ehlers-Danlos Syndromes.” In the central photo, a group of people are walking outdoors on a stone-paved area in front of a large building with tall stone columns and doors. Several people are carrying cardboard boxes. One person is seated in a wheelchair holding a box. Main headline below photo: “Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use”. Body text: “Run Away, Netflix’s latest Harlan Coben adaptation has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user.” At bottom left is a rounded button that says “Read More” with a right-pointing arrow icon. Website text at the bottom :“www.chronicpainpartners.com”
Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use
www.chronicpainpartners.com/netflixs-run...
#EDS #hEDS #HSD #Zebras #Spoonies #Disability #DisCo #MedSky #MedX
Overcoming Barriers With Creativity: Watch Lego Oma by @KarinaSturm
buff.ly/40tZi3Y
#EDS #HSD #hypermobility #Disability #DisCo #Zebras #Spoonies #Accessibility #Access #NEISvoid #POTS #MCAS #Lego #Legos
Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management - our team reviewed and listed the top 25 for you:
buff.ly/3ZQCrPP
#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #NEISVoid #Spoonies #Zebras #Disability #Patients #Dysautonomia #POTS
You're welcome!
Orange promo poster about scoliosis care and the Schroth Method. Top text: “Introducing the Schroth Method for scoliosis care”. Top-left logo reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. Left side graphics show a large white outline of a curved spine & pelvis illustration, with gray lightning-bolt shapes and two large question marks. Photo on the right shows two adult women in an exercise/therapy room. One (light skin) in black athletic shorts and a black sports bra is barefoot and facing a wooden wall-bar, with arms raised holding the bars; knees are bent in a partial squat. Dr. Campesi (light skin) is behind her, wearing a black long-sleeve top, teal leggings, and black sneakers and appears to be guiding her posture with hands at the upper back and hip area. Small white text reads: “Here we share an expert Q&A on scoliosis care in EDS featuring Caroline Campesi, DPT” Teal text at bottom: “chronicpainpartners.com”
Introducing Schroth Therapy: An Expert Q&A on Scoliosis Care in EDS with Dr. Campesi
buff.ly/WKS62OG
#EDS #HSD #zebras #Scoliosis #Physio #MedSky #MedEd
“But perhaps this is #healing
not a single moment,
but a slow #unlearning of #fear,
a gentle relearning of #trust.
Maybe this week was not a storm after all,
but a quiet opening in the sky...”: buff.ly/88SnqSr
via @cppedsa.bsky.social
#allergy #ChronicPain #humanity
We need your support to keep our media team going thank you! Can you help?
www.chronicpainpartners.com/chronic-pain...
#EDS #EDSAwareness #HSD #Zebras #Spoonies #NEISvoid #Support
We remember our late visionary founder John Ferman while continuing to uphold his EDS Awareness legacy…
www.chronicpainpartners.com/in-memory-of...
#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #Doctors
A promotional graphic with a calm lake landscape and text banners at the top and bottom. The main photo shows a person sitting on a rocky shoreline facing a wide, still lake, with tree-lined banks on both sides and early autumn colors (greens with some reds and yellows) under a cloudy sky. Text at the top on a teal background reads: “The Silence After Survival...” A circular logo at the top left reads: “EDS Awareness” and underneath: “Ehlers-Danlos Syndromes” Text at the bottom on a teal background reads: “Guest post by Debbie Hellenbrand” Below that: “www.chronicpainpartners.com"
The Silence After Survival - Guest post by Debbie Hellenbrand on surviving anaphylaxis with caring help for once…
buff.ly/o1idmfK
#EDS #hEDS #HSD #MCAS #masto #zebras #Spoonies #MedX
A smiling woman sitting on an exercise ball with arms outstretched, wearing a white tank top and black shorts. There is a cat lying on a nearby chair with a striped blanket. Behind her, banners on the wall say "AWOL Zebra." On the table next to her are towels, some white models or tools, and a glass. The top of the image displays the website "www.chronicpainpartners.com." Text at the bottom reads: "Interview with CHristie @AWOL Zebra" In the lower right corner is a logo that says "EDS Awareness Ehlers-Danlos Syndromes."
AWOL Zebra Podcast: Building Community (and Laughs) Around EDS
buff.ly/ofignWQ
#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support