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TOPIC
TOPIC
Atlantoaxial Rotary Instability
Craniocervical Instability
Instability/Hypermobility
Pain
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Symptoms
Connective Tissue Disorders
Ehlers-Danlos Syndrome
Mast Cell Activation
Physical Therapy
POTS
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unite@thehill
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Tethered Cord
Dysautonomia/Autonomic Issues
Veterinary
Telehealth
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Tratos
Chiari@School
Suicide
Cardiology
Basilar invagination
Cervical Medullary Syndrome
Spinal Deformity
TMJ
Intracranial Hypertension
Ophthalmology/Eye
Pseudotumor Cerebri
101s and Overviews
Mast Cell Activation Disorder
Neuro Connect Summit
Sleep
Dystonia
Occupational Therapy
Neurodegenerative
Bobby Jones CSF
Leaky Gut Syndrome
SPEAKER
SPEAKER
Henderson, Sr., Dr. Fraser C.
Perretto, Dr. Marcia
Maher, Dr. Cormac
Jackson, Dr. Eric
Haines, Dr. Scott
Yeom, Dr. Kristen
Roland, Dr. Jarod
Strahle, Dr. Jennifer
Nichols, Dr. Michelle
Chalela, Susan
Brockmeyer, Dr. Douglas
Bauer, Dr. David
Qian, Dr. Xiang
Limbrick, Dr. David
Proctor, Dr. Mark
Vacchrajani, Dr. Shobhan
Sheers, Matt
Grant, Dr. Gerald
Greenfield, Dr. Jeffrey
Means, Kristin
Means, Michael
Rauch, Julie
Parker, Dr. Cassie
Felix, Dr. Victoria
WIldrick, Wayne
Cox, Christie
Fenner, Roman
Ross/Paterson, Dr. Travis & Dr. Mark
Stephen, Dr. James
Grubb, Dr. Blair
Ruhoy, Dr. Ilene
Gensemer, Dr. Cortney
Norris, Dr. Russel "Chip"
Stadler, Dr. James A.
Loughin, Dr. Catherine
Ravindra, Dr. Vijay
Patel, Dr. Sunil
Dlouhy, Dr. Brian
Tomei, Dr. Krystal
Marupudi, Dr. Neena
Mangano, Dr. Francesco
Klinge, Dr. Petra
Luciano, Dr. Mark
Rodriguez, Dr. Luis
Trumble, Dr. Eric
Vuong, Dr. Shawn
Rocque, Dr. Brandon
Oró, Suzanne
Kula, Dr. Roger
Gilmer, Dr. Holly
Fisher, Dr. Stacy
Batzdorf, Dr. Ulrich
Sacco, Dr. David
Pocinki, Dr. Alan
Heger, Dr. Ian
Hurd, Dr. Andrew
Narayanan, Dr. Malini
Ellenbogen, Dr. Richard
Kellogg, Dr. Robert
Fischer, Deirdre
Maitland, Dr. Anne
McEvoy, Dr. Sean D.
Meehan, Thanda
Gurnett, Dr. Christina
Epperson, Mary
Poppe, Dorothy
Weninger, Juliana
Roberts, Matthew
Huang, Dr. Judy
Langa, Cassy
Chan, Dr. Michael
Cleveland, Lisa
Tobler, Dr. William
Parker, Dr. Charles
Meegan, Dr. Patricia
Behm, Joanna
Wilson, Michelle
Ruge, Dr. John
Nikas, Dr. Dimitrios
Damadian, Dr. Raymond
Oró, Dr. John
Elder, Dr. Benjamin
Glenn, Dr. James
Fallah, Dr. Aria
Snyder, J.D., Sherry
Liu, Dr. Kenneth
Aikulola, Amanda
Heiss, Dr. John
Brinker, Dr. Jeffrey
Lasko, Dr. Kevin
Halstead, Dr. Lucinda
Theodore, Dr. Nicholas
Hinson, Dr. Vanessa
Carey, Dr. Carolyn
Sexton, Kimberly
Truex, Deborrah
Rao, Dr. Aruna
White, Dr. Andrew
Turner, Dr. Travis
Rowe, Dr. Peter
Buethe, Dr. Ji
Iskandar, Dr. Bermans
Perrine, Dr. Kenneth
Sacks-Zimmerman, Dr. Amanda
Spat-Lemus, Dr. Jessica
Shimony, Dr. Nir
Tuite, Dr. Gerald
Gonzalez, Dr. Theresa
Vorster, Dr. Sarel Charl
Merritt, Dr. Sarah
Verdun, Dr. Aubrey
Chaudry, Dr. Imram
AuBuchon, Dr. Jacob
Rozzelle, Dr. Curtis
Murdock, Dr. Jonah
Mazzola, Dr. Catherine
Souweidane, Dr. Mark
Lacy, Dr. Maureen
Tregaskes, Dr. Joseph
Healy, Dr. Michael
Connell, Wayne
Klein, Dr. Pavel
Grill, Dr. Stephen
Bennett, Chantelle
Sullivan, Marla
Lawless, Dr. Oliver
RInger, Dr. Andrew
Neilson, Dr. Derek
Mitakides, Dr. John
Austin, Dr. Claudiu
Mankin, Dr. Keith
Patel, Dr. Neil
Guillory, Dr. Gerard
Castells, Dr. Maria
Manzano, Dr. Glen
Hocum, Dr. Brian
Krishna, Dr. Jyoti
Green, Dr. Barth
Singman, Dr. Eric
Canavan, Dr. Eric
Canavan, Dr. Nicole
LaCerte, Dr. Lance
Mueller, Diane
Moran, Dr. Rocio
Weltz, Dr. Martin
Watson, Dr. Nathaniel
Lucas, Dr. Sylvia
Tauben, Dr. David
Browd, Dr. Samuel
Figler, Dr. Richard
Rekate, Dr. Harold
Koby, Dr. Myles
Mark, Dr. Alexander
Greeson, Dr. Jeffrey
Rothner, Dr. David
Huh, Dr. Billy
Loeser, Dr. John
Marino, Dr. Dominic
Recinos, Dr. Violette
Fitzgerald, Dr. Dennis
Dewey, Dr. Curtis
Ashley-Koch, Dr. Allison
Dommerholt, Dr. Jan
Benzel, Dr. Edward
Covington, Dr. Edward
Scheman, Dr. Judith
Cranio-cervical Instability: clinical diagnosis, radiological metrics, treatment and outcomes analysis
Conservative treatment for Craniocervical Instability and Atlanto-Axial Instability
Long Term Health with Chiari Malformation
Top 100 Questions About Chiari
Papilledema
Multi-Modal Neuroimaging for Chiari 1
What We Know About Chiari & Neuroimaging Research
Redefining Chiari I Malformation: Prevalence, Natural History, and Patient/Family Perspectives
Addressing the complexities of hEDS care using community engaged research
CCI: Clinical Diagnosis, Radiological Metrics, Treatment, and Outcomes Analysis
Why Neuroplasticity for Ehlers-Danlos Syndrome Works!
The Chiari Comorbidity Conundrum
Chiari: The Patient Experience
Chiari Malformation: What should I know as a patient?
Current Controversies in Chiari Malformation
Pain Treatment in Chiari
What to Know About Chiari 1 Malformation: What is Chiari and Why Do I Have Symptoms?
Presentation and Outcomes in Chiari I Malformation: Patient-Centered Interpretation of Clinical Research
Chiari as an Incidental Finding
You Don’t Always Need Surgery for your Chiari!
KarunaHOME
Ask the Expert featuring Dr. Ryan Myers
Chiari Over the Ages – Dr. Gerry Grant
I’ve Just Been Diagnosed… Now What?: A Patient’s Perspective
Relationships in Crisis: An interactive session with patients and caregivers
Preparing for Your Advocacy Meeting on the Hill: Strategies for Success
Power Over Pain: Cultivating Resilience of Mind and Body to Live with Joy
CBT Tools for Coping with Chronic Illness
Donor Advised Funds
Dealing with Disease
Recipe for Happiness
Braeden Means and Easton Guettler Perform
Hope on the Horizon: Highlighting New Scientific Discoveries and the Future for Patients Like Us
How to Keep Exercising While Staying Safe and Knowing Your Boundaries
Psychological Considerations and Interventions for Coping with Chronic Illness
Ask the Expert: The Initial Appointment – Additional Conditions to Evaluate
Inflammatory Cytokine and Chemokine Biomarkers in POTS Patients with Elevated Adrenergic and Muscarinic Autoantibodies
Ask the Expert: The “Pentad” Patient
Ask the Expert: Clinical and Scientific Discoveries in hEDS and Associated Co-morbidities
Ask the Expert: Syringomyelia – Learning What We Don’t Know
Ask the Expert: Chiari, Ehlers Danlos syndrome and Tethered Cord in Animals
How Does Chiari Affect Quality of Life
Ask the Expert: Chiari Research – Emphasis on Bio-mechanical Parameters
Ask the Expert: Open Q&A
Ask the Expert: Chiari Malformation and Craniocervical Instability from Bone and Ligament Abnormalities
Ask the Expert: FOR KIDS: All About Chiari Malformation & Syringomyelia
Ask the Expert: Chiari malformation/craniospinal junction geometry and measurements
Ask the Expert: Chiari – Diagnosis, Treatment & Effects of Delay in Treatment
Ask the Expert: Complex Chiari
Ask the Expert: CSF Flow in Chiari, Tethered Cord and Connective Tissues Disorders
Ask the Expert: Chiari and CSF Disorders
Preguntas a Los Expertos: Malformación de Chiari
Ask the Expert: Surgical Considerations in Chiari I
Ask the Expert: The State of Chiari Research: Where We Have Been & Where We Are Going
Ask the Expert: Chiari I Malformation in Children
Ask the Expert: Back to School – Chiari & COVID-19
Ask the Expert: Chiari, Neural injury, Hydrocephalus, Syrinx & Arachnoid Cysts
Ask the Expert: Open Chiari Q&A with Dr. Cormac Maher
Ask the Expert – Neurology with Dr. Roger Kula
Ask the Expert: Open Q&A – Chiari & Related Disorders
Ask the Expert: Cardiology – Neurological Conditions and Connective Tissue Disorders
Bobby Jones CSF: Ask the Expert with Dr. Fraser C. Henderson, Sr.
Ask the Expert: Craniocervical Instability with Dr. Fraser C. Henderson
Ask the Experts: Tethered Cord Syndrome
Bobby Jones CSF Ask the Expert with Dr. Jeffrey P. Greenfield
Ask the Expert: Syringomyelia with Dr. Ulrich Batzdorf
Craniosynostosis and Chiari Malformations
Symptoms & Management of Autonomic Dysfunction in Ehlers-Danlos and Related Syndromes
Chiari Malformation: Diagnosis, Management & Treatment
Chiari Malformation in Children and Adolescents
Headaches in the EDS and Chiari Population & Intracranial Pressure Abnormalities
Seattle Children’s Hospital: Chiari Malformations Roundtable
Chiari Malformation & Chiari 1.5: An Update
School Success After Diagnosis: Chiari & Related Disorders
Mast Cell Activation
Pediatric Chiari 1 Malformations: Presentation, Indications for Treatment & Management
Chiari Malformation Diagnosis, Concerns & Surgical Considerations
Chiari Malformation, Chiari Decompression and Neurosurgery
Posterior Fossa Decompression for Chiari Malformation & Syringomyelia: Study Update
Genetics of Chiari Malformation & Related Disorders
Headache in Arnold Chiari Malformation
About the Bobby Jones Chiari & Syringomyelia Foundation
Disability Rights: Educational Advocacy and Reasonable Accommodations
Know Your Rights: Disability Rights and Advocacy
Chiari I Malformation: The “Cover Up”
Patient Testimonial – Cassy Langa
Surgical Treatment of Chiari Malformation
Chiari Surgery: Expectations & Recovery
Depression, Suicide and Chronic Brain Illness
2019 Neuro Connect Summit – Physical Therapy in Ehlers-Danlos Syndrome
2019 Neuro Connect Summit – Occupational Therapy to Address Fatigue in Chronic Illness
2019 Neuro Connect Summit – Dysphagia and Speech Therapy
The Relationship Between Chiari Malformation, Syrinx (Syringomyelia) and Scoliosis
Is My Headache Due to my Chiari Malformation?
Sleep Disorders in Ehlers-Danlos Syndrome (EDS) and Related Disorders
Ask the Expert: Chiari Malformation, Syringomyelia and Related Disorders Q&A
The Story of the MRI
Chiari and Chiari Concerns
Tethered Cord Syndrome and Ehlers-Danlos Syndrome
Answers to Common Questions About Chiari Malformations
How the Gut Regulates Brain Health
Adult Onset Hydrocephalus
Neurocardiology: Dysautonomia, Orthostatic Intolerance, POTS & Other Disorders
Common Pitfalls in Chiari Operations
August 2018 Update: Posterior Fossa Decompression Trial for Chiari & Syringomyelia
Importance of Estate Planning for Individuals with Disability
“Becoming Your Own Advocate” – Panel Discussion at 2018 St. Louis CSF Meeting
Ehlers-Danlos Syndrome and Orthostatic Intolerance
Intracranial Venous Stenting for Idiopathic Intracranial Hypertension (Pseudotumor Cerebri)
Chiari @ School – Educational Advocacy
Preparing for Perioperative Success
Syringomyelia Update: Diagnosis, Treatment and Research
Cerebellar-Medullary Compression Syndrome: A Unifying Algorithm for Diagnosis and Management of “Chiari Malformation”
Chiari: A Fluid Disorder
Dysautonomia
The Great Debate: Posterior Fossa Decompression With or Without Duraplasty for Chiari Malformation & Syringomyelia
Five Year Follow Up of Craniocervical Fusions
Surgical Principles & Avoiding Treatment Failure
Case Study: Cervical Dystonia Resolution with Somatosensory Therapy
Voice, Swallowing & Airway Issues Associated with Surgical Correction of Chiari
New Concepts in Spinal Cord Pathophysiology
Diagnosis & Management of Chiari-Related Dystonia
Hydrocephalus
La Malformación de Chiari *en español*
Hydrocephalus
Chiari I & Two Hidden Headache Disorders: IIH & SIH
Reclaiming Health through Wellness: Chiari Malformation, Syringomyelia & Related Disorders
Headache & Headaches in Dysautonomia and Ehlers-Danlos Syndrome (EDS)
Headaches in the Chiari & Ehlers-Danlos (EDS) Populations
Lumbar Puncture & ICP Monitoring in Evaluation of CSF Disorders
Hypermobility EDS, Connective Tissue Disorders, Genetics, Joints and the Spine
Is Brain Fog Normal?: Walkthrough of a Neuropsychology Evaluation
Chiari Malformation, Dysautonomia & the Autonomic System: The Connection
POTS, Neurally Mediated Hypotension & the Tilt Table Test (Tilt Test)
Treatment of Dysautonomia: Sympatholysis for Hyperhidrosis
60 Years Later: What Pediatric Neurosurgery Knows & Wishes It Knew About Shunted Hydrocephalus
Chiari Malformation & Neurocognition
Chiari Malformations & Current Chiari Research
Surgical Management of Chiari Malformation in Children & Adolescents
Chronic Pain & Temporomandibular Disorder: Systemic & Syndromic Implications
Pitfalls of Diagnosis & Treatment of Chiari Malformation
Chronic Pain Update: CDC Guidelines on Treating Chronic Pain
Early & Delayed Analgesic: Effects on Pain in Total Hip Arthroplasty
Venous Distensibility in Management of Vascular Pooling in EDS
Idiopathic Intracranial Hypertension (IIH) and Pseudotumor Cerebri Treatments
Pain Management, Chronic Pain & Hypermobility
Complex Chiari Malformation and Connective Tissue Disorders
Chiari I Decompression: Who Needs It?
Physical Therapy in Joint Hypermobility Syndrome
Urology Issues in Chiari, EDS & Connective Tissue Disorders
Hydrocephalus
Neurological & Spinal Disorders in EDS
Syringomyelia: Chiari Malformation With & Without a Syrinx
Venous Stenting in Intracranial Hypertension
Complications & Secondary Conditions of Chiari Malformation
Treatment Options for Chiari & Syringomyelia
Neuropsychology of Chiari Type 1
Temporomandibular Joint Dysfunction & Sleep Disorders
Chiari CARE
Chiari Malformation: The Simple Gets Complicated
Unique Manual Physical Therapy Approach to Treat Craniocervical Instability & Chiari
What We Don’t Know (But Really Should Know) About Chiari Malformation
Chiari Malformation & Syringomyelia: Diagnosis & Treatment in 2016
Invisible No More®: The Seven Realities of the Invisible Becoming Visible
Chiari & the Mind
Seizures
2015 Children’s Night of Light Gala Patient Speaker: Rosanne Cash
UNITE@NIGHT AKRON, OHIO MEMBER WALK
Dystonia
Helping Children Cope with Chiari Surgery
Chiari Overview & Surgical Issues
Rehab After Chiari Surgery
Research: Past, Present and Future
CHIARI MALFORMATION: ADVOCACY IN ACTION
Tethered Spinal Cord Syndrome
Epigenetics of Lupus & Neurodegenerative Disease
Chiari Diagnosis & Treatment Options
EDS, Hypermobility: Evolving Perspectives
TMJ & CCI in EDS & Mitakides Pain Syndrome
PANDAS, Paraneoplastic Limbic Encephalitis & Other Autoimmune Syndromes
Neuro-ophthalmology of Connective Tissue Disorders
“Out of the Garden”: When Scoliosis is Not Just Scoliosis
Chiari Malformations: Diagnosis & Treatment
Surgical Considerations in the Treatment of Chiari & Syringomyelia
Chiari & Syringomyelia: Research to Increase our Knowledge and Their Treatment
NBC TOUR Championship Spot for the Bobby Jones Classic
Breaking the Cycle of Chronic Pain, Poor Sleep, Depression and Fatigue
CSF UNITE@THEHILL – LITTLE ADVOCATES
Leaky Gut Syndrome: Fact or Fiction?
Surgical Advancements in the Management of Chiari I Malformation
Chiari Malformations
Chiari Malformations Q&A
Mast Cell Activation Disorder
La Malformación de Chiari y Siringomielia
Genetic Evaluation of Drug Metabolism
Sleeping with Chiari: The Role of the Sleep Lab
Diagnosis & Treatment of Pain Associated with Chiari I Malformation & Syringomyelia
Stabilization and Fusion – 2 Year Follow Up
Dysautonomia and POTS in the Chiari/EDS Population
PTC, Chiari, Sticky Blood & EDS: The Opthalmologic Connection
Chiari & Hydrocephalus: Going With the Flow
Physical Therapy Options & Considerations for the EDS & Chiari Patient
SKYLER’S PSA
Managing Chronic Pain: A Psychological Approach
Steps to Better Health
Introduction to Chiari Malformation and Syringomyelia
Common Symptoms of Chiari Malformation
Pregnancy and Diagnostic Methodologies
Diagnosis of Craniocertebral Instability in the Chiari/EDS Population
Genetics and Heritability
Hematological Problems Arising in Patients with Chiari Malformation & Ehlers-Danlos Syndrome
Intersection of Chiari and Fibromyalgia
The Difficult Headache and Principles of Treatment
Pain Management in Chiari
Tethered Cord & Spinal Instability: How Do I Know If I Have It?
How Do I Know If My Surgery Failed?
Chiari in the Field: Chiari & Sports
If It’s Not Chiari, What Else Could It Be?
Chiari Malformation: A Name Which Leads to Unnecessary Confusion
Radiological Aspects of Chiari, Syringomyelia, Craniocervical Instability & Related Disorders
Discovering the Health Benefits of Mindfulness
Diagnosis and Treatment of Craniocervical Instability in the Chiari Patient
Limitations of Surgical Treatment in the Relief of Headaches
Pain Management
Pains Associated with Congenital Malformations of the Nervous System
Chiari Malformation & Pseudotumor Cerebri
A New Life for Zoe
Chiari Diagnosis and Management: A Multidisciplinary Approach
Hearing & Balance Disorders in Chiari and Related Conditions
Bridging the Divide
…Could you spell that for me?
Kaya’s Story
Genetics of Chiari Malformation
Genetics of Chiari Malformation Q&A
Physiotherapeutic Options for Headache After Surgery for Chiari Malformations Pt. 1
Physiotherapeutic Options for Headache After Surgery for Chiari Malformations Pt. 2
Questions You Were Afraid to Ask About Chiari and Syringomyelia Pt. 1
Questions You Were Afraid to Ask About Chiari and Syringomyelia Pt. 2
The Many Faces of Pain Pt. 1
The Many Faces of Pain Pt. 2
Now What…?
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