@cppedsa

cppedsa has been a member of Linktree for 2 years and joined in November 2023. The social media accounts linked to from cppedsa are: • Facebook • Instagram Besides social media accounts, cppedsa has populated their site with: • Ten Years and a Time Capsule: What Changed, What Didn't, and What's Next – EDSAwareness.com - EDSAwareness.com • The Condition Medicine Forgot: Visceroptosis – EDSAwareness.com - EDSAwareness.com • An Interview with Amy Wang-Hiller: Music, Disability, and Advocacy – EDSAwareness.com - EDSAwareness.com • Donate to CPP • Chronic Pain Webinars • Explore shared protein signatures in HEDS and HSD • Things People Have Done That Made Me Feel More Comfortable as Someone with Chronic Illness – EDSAwareness.com - EDSAwareness.com • Disability Pride Month: The World Works Better With Us – EDSAwareness.com - EDSAwareness.com • What’s the Point of Pursuing EDS Diagnosis? – EDSAwareness.com - EDSAwareness.com • Beyond the Myths: Four People Talk About the Reality of Living With EDS & HSD – EDSAwareness.com - EDSAwareness.com • Horizontal Parenting: 5 Strategies I Used After Surgery as a Disabled Single Mom – EDSAwareness.com - EDSAwareness.com • EDS Newsletter April 2026: Catch up on what you may have missed! • Explore writer role on chronicpainpartners.com • A Thank You to Karina Sturm for Her Leadership at Chronic Pain Partners – EDSAwareness.com - EDSAwareness.com • Why May is The Moment for “Complicated” – EDSAwareness.com - EDSAwareness.com • Sat May 2nd Special online Screening of COMPLICATED! $3 • 2pm-4pm EST | Eventbrite • Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026) – EDSAwareness.com - EDSAwareness.com • Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use – EDSAwareness.com - EDSAwareness.com • The Silence After Survival – EDSAwareness.com - EDSAwareness.com • Measuring the Unmeasured – What Two New Studies Say About the Head, Neck, and hEDS • Schroth Therapy: An Expert Q&A on Scoliosis Care in EDS – EDSAwareness.com - EDSAwareness.com • Episode 3: Neurodivergence, with Jan Groh, author OhTWIST • From Patient to Researcher: An Interview with Jeevan Mann – EDSAwareness.com - EDSAwareness.com • EDS Newsletter February 2026: Neurodivergence Podcast • Book Review: The Chemistry Test – EDSAwareness.com - EDSAwareness.com • The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible – EDSAwareness.com - EDSAwareness.com • New App Can Help Screen for EDS – EDSAwareness.com - EDSAwareness.com • Research Round-up, Edition Six – EDSAwareness.com - EDSAwareness.com • Podcast - EDSAwareness.com • Navigating the Holidays with EDS – EDSAwareness.com - EDSAwareness.com • A Cheerful Gift Guide for People with EDS, Chronic Pain, Chronic Illness, Disability, and Those Who Love Them: Chronic Pain Partners’ 2025 Gift Guide – EDSAwareness.com - EDSAwareness.com • Episode 2: Medically Complex Children – EDSAwareness.com - EDSAwareness.com • “Watch Out For Mum” - Wrongful Child Abuse Allegations Harms Whole Family – EDSAwareness.com - EDSAwareness.com • Boston Screening of COMPLICATED Thu, Dec 11, 2025 at 7:00 PM | Eventbrite • EDS Newsletter December 2025: In Loving Memory of John Ferman, our Founder • Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it – EDSAwareness.com - EDSAwareness.com • EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations – EDSAwareness.com - EDSAwareness.com • My Wife Had EDS and Did Not Know IT! - EDSAwareness.com • AWOL Zebra Podcast: Building Community (and Laughs) Around EDS – EDSAwareness.com - EDSAwareness.com • New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome – EDSAwareness.com - EDSAwareness.com • Interview with Georgina Frankie: Author of "The Chemistry Test" – EDSAwareness.com - EDSAwareness.com • From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors – EDSAwareness.com - EDSAwareness.com • Update On Gene Linked to Hypermobile EDS – EDSAwareness.com - EDSAwareness.com • EDS Unplugged Podcast, Episode 1: Invisible Disabilities Awareness with Kate Schultz – EDSAwareness.com - EDSAwareness.com • Building a Supportive and Caring Medical Team No Matter Where You Live – EDSAwareness.com - EDSAwareness.com • EDS Newsletter October 2025: New Study hEDS gene, New EDS Podcast • September is Pain Awareness Month – EDSAwareness.com - EDSAwareness.com • Can I Pet It?: Understanding Animal Helpers – EDSAwareness.com • Research Round-up, Edition Five: Pediatrics – EDSAwareness.com • Discover Chronius health care on edsawareness.com • The Quiet Weight of Chronic Illness Grief – EDSAwareness.com • “It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades – EDSAwareness.com • Out of Spoons: A Spoonie-Centered Coloring Book from Author and Artist Jules Machias – EDSAwareness.com • EDS Newsletter August 2025: Service Animals, Grief, New EDS Care and more • Slamdance Unstoppable Road Tour - COMPLICATED film showings • EDS Awareness's Patient Guides • EDS Types, Symptoms, and Prevalence | EDSAwareness.com • Welcome to Lipedema Awareness Month – EDSAwareness.com • POTS, EDS, and the Scorching Sun: Heat Intolerance & Your Summer Survival Guide – EDSAwareness.com • The World Premiere of Complicated: The Film That Named Itself! – EDSAwareness.com • The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com • Much More Than That – showing May 29-31 in Toronto • Free Ticket | Daily Movie Pass | IBDFF • Hyp+Care: A New Clinic for Chronic Conditions including EDS In New York & Beyond – EDSAwareness.com • Jen Kain about her new EDS doc “Exhausted Existence” – EDSAwareness.com • Film Review: “Exhausted Existence – An EDS Story” – EDSAwareness.com • We’re Not Confused - The System Is: Community Survey Shouts for EDS/HSD Classification Change – EDSAwareness.com • New CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders – EDSAwareness.com • Why Is It So Hard To Get A Genetics Appointment For My Child? – EDSAwareness.com • Understanding Your Flare Fettered Friend – EDSAwareness.com • New Pain Killer on the Market: Suzetrigine – EDSAwareness.com • It's EDS Awareness Month! - EDS Newsletter May 2025 • 22 Ways to Celebrate EDS and HSD Awareness Month – EDSAwareness.com • Current Administration Threatens Medicaid - April 2025 – EDSAwareness.com • Documentary Films on Ehlers-Danlos Syndrome – EDSAwareness.com • Hypermobility Happy Hour - Episodes • Podcasts Archive – EDSAwareness.com • HHH Ep 70 on Apple- Highly Sensitive People, Neurodivergency, ADHD & Advocacy: Donna Irene • HHH Ep 70 on Soundcloud - Highly Sensitive People, Neurodivergency, ADHD & Advocacy: Donna Irene • A Mother’s Day Shout Out from An EDS Mom and The Producer of Complicated – EDSAwareness.com • COMPLICATED Film Trailer • Complicated - the must-watch documentary on Ehlers-Danlos Syndrome – EDSAwareness.com • Research Round-Up, Edition 4: Neurodivergence – EDSAwareness.com • Much More Than That – EDSAwareness.com • Neurodiversity Celebration Week March 17-23rd 2025 • Exhausted Existence – A New Documentary on Living with EDS – EDSAwareness.com • EDS Community Favorites List - add yours! • EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos – EDSAwareness.com • Neurodivergence and Hypermobility: The Autism-EDS Connection – EDSAwareness.com • EDS & Neurodivergence Special - EDS Newsletter March 2025 • 2025 Feb Slamdance Lineup includes COMPLICATED film • How Rebecca Yarros’ “Fourth Wing” Embodies Ehlers-Danlos Syndrome – EDSAwareness.com • Digesting the Facts: Tackling Gastrointestinal Challenges in EDS – EDSAwareness.com • EDS and Neurodiversity: The Connection • EDS & Autism Special - EDS Newsletter January 2025 • Volunteer Writer sought • Webinar Coordinator sought • EDSed Episode 4: Dr. Jacqueline Wolf on GI symptoms & Endometriosis • Jacqueline L. Wolf, M.D. - About the Author • Research Round-Up, Edition Three – EDSAwareness.com • Part Six: Dear Doctor: How To Avoid Causing Clinician-Associated Trauma – EDSAwareness.com • EDS and Liver Disease Survey - Dr. Jacqueline Wolf at Beth Israel • EDS Awareness Feedback Survey - drive 2025 for us • Research News: Could a Blood Test for hEDS & HSD Be Possible? – EDSAwareness.com • Emotions When Choosing Self-Health Over Dysfunctional Family Dynamics – EDSAwareness.com • New Research Study Finds Everything is Connected, As Many Patients Suspected – EDSAwareness.com • Proud Stutter – EDSAwareness.com • POTS vs. Anxiety: The Misdiagnosis Maze – EDSAwareness.com • Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management – EDSAwareness.com • Low-Dose Naltrexone: Possible Pain Relief in a Small Package – EDSAwareness.com • Navigating the Holidays with EDS – EDSAwareness.com • New HEDS Biomarker found - EDS Newsletter November 2024 • Overcoming Barriers With Creativity: Watch Lego Oma – EDSAwareness.com • Nat Geo: Why double-jointed people are more likely to have health problems • Dysautonomia International: Dysautonomia Awareness, Dysautonomia Advocacy, Dysautonomia Advancement • New Research Identifies Potential Biomarkers for Diagnosing Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders - The Ehlers Danlos Society • Research Round-Up, volume 2 – EDSAwareness.com • Book Review of Rebel Health: Pioneering Patient-Led Solutions in Healthcare by Susannah Fox – EDSAwareness.com • Book Review of New EDS Book Symptomatic – EDSAwareness.com • Find Answers Faster: The EDS411 Living Library – EDSAwareness.com • Part 5: Healing the Hurt: How To Handle Clinician-Associated Trauma – EDSAwareness.com • Explore Our Revamped Website & New Content! 🌐💡 - EDS Newsletter September 2024 • Understanding the EDS Pain Maze during Pain Awareness Mont (Sept) • Beth O'Hara Memorial Service – August 29th, 2024 • EDS Back to School Special – Prep for K-12, College & Accommodations – EDSAwareness.com • Research Round-Up, Edition One – EDSAwareness.com • Live Webinar Aug 9 with Susannah Fox, Author of Rebel Health – EDSAwareness.com • Help Shine a Spotlight: Unveiling the Hidden Triad of MCAS, Hypermobility, and Dysautonomia Through an Upcoming Film – EDSAwareness.com • Got the Barometric Blues? – EDSAwareness.com • You Made a Difference in Scientific Research for hEDS – EDSAwareness.com • Top Ten Reasons EDS SUCKS! - EDSAwareness.com • Podcasts on Ehlers-Danlos Syndrome - EDSAwareness.com • July 2024: Scientific Breakthrough: Possible hEDS Gene Found! - Ehlers-Danlos News • POTS, EDS, and the Scorching Sun: Heat Intolerance & Your Summer Survival Guide - EDSAwareness.com • Lipedema Foundation • EDSed Episode 1: The Norris Lab - EDSAwareness.com • 2022 Interview with Dr. Norris on finding the genetic cause(s) for hypermobile EDS and much more - EDSAwareness.com • You Made a Difference in Scientific Research for hEDS - EDSAwareness.com • Norris Lab Finds HEDS Gene: Kallikrein - EDSAwareness.com • Clinician-Associated Trauma Series • Complicated - the must-watch documentary on Ehlers-Danlos Syndrome - EDSAwareness.com • A Mother’s Day Shout Out from An EDS Mom and The Producer of Complicated - EDSAwareness.com • Chronic Pain Partners impact over the last twelve years • Filmmaker Andrew Abrahams on the New EDS Documentary 'Complicated' - EDSAwareness.com • THINGS THAT SUCK ABOUT EDS--WHICH ONE IS THE WORST? • EDS Awareness Month Special Edition: New EDS Film! EDS books, Awareness Campaign! • Play it Forward: Contribute to the EDS Community Playlist on Spotify This May! - EDSAwareness.com • Grab your Play-It- Forward t-shirt here before May 21, 2024! • The Rise of Clinician-Associated Trauma in the Doctor-Patient Relationship - EDSAwareness.com • Outcomes of Craniocervical Instability Fusion Surgery in People with EDS - EDSAwareness.com • Decoding Medical Deductions: A Chronic Illness Patient’s Guide to Navigating Healthcare-Related Expenses and Taxes - EDSAwareness.com • HEDS or HSD: Study Questions Diagnostic Criteria - EDSAwareness.com • April EDS News: New EDS Clinic! Tax Deductions and more. • Books on Ehlers-Danlos Syndrome - EDSAwareness.com • Complicated — Open Eye Pictures - a film about medical kidnapping and EDS • A New EDS Clinic Coming to a Town Near You (Via Telehealth) - EDSAwareness.com • Popular People With Ehlers-Danlos Syndrome - EDSAwareness.com • Unraveling Tethered Cord for EDS Patients (simplified version) - EDSAwareness.com • Medical Gaslighting as a Source of Clinician-Associated Trauma - EDSAwareness.com • EDS Advocates to Follow on Social Media - EDSAwareness.com • February 2024 EDS News & Updates • Children’s Book about Ehlers-Danlos Published - EDSAwareness.com • Know Your Love Language? Learn to Speak it Well Despite Chronic Illness - EDSAwareness.com • Tethered Cord in EDS: A Patient Guide to Symptoms, Diagnostics, Treatments, and Risks - EDSAwareness.com • 2024 EDS Awareness Survey - What Topics to see? • December 2023 EDS News & Updates • New 2023 MCAS Patient Guide • Rising Doctor Making an Impact on hEDS: Q&A with MUSC MD/PhD Student Roman Fenner • hEDS researchers explain clinician-associated trauma - Part II • 10 clever comebacks for handling offensive comments about hEDS - EDSAwareness.com • Gut Check: Gluten Intolerance, Celiac Disease, or Mast Cell Reaction? - EDSAwareness.com • Toxic Positivity: Recognizing It and Preserving Your Spoons - EDSAwareness.com • EDS & Psychological Medical Trauma: An Introduction (Part I) • EDS, Dating & Internalized Ableism - EDSAwareness.com • It’s Worth a Shot: Prolotherapy, PRP & related therapy for EDS • Follow us on Facebook • Follow us on Instagram • Filmmaker Andrew Abrahams on the New EDS Documentary 'Complicated' – EDSAwareness.com • Why a Sun Umbrella May Deserve a Spot in Your Dysautonomia Toolkit This Summer – EDSAwareness.com - EDSAwareness.com • Seeing the Spine in Motion: Exploring the Potential Benefits of Upright MRI in EDS – EDSAwareness.com - EDSAwareness.com • College Accommodations for Ehlers-Danlos Syndrome – EDSAwareness.com - EDSAwareness.com • Where People Understand - short tribute to John Ferman • My Ostomy Saved My Life – EDSAwareness.com - EDSAwareness.com • Chronic Pain Partners Website • In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness – EDSAwareness.com - EDSAwareness.com • EDS Awareness newsletters archive • CPP EDS Awareness Patient Guides