Syringomyelia Awareness 2019

In 1988 Don and Barbara White officially founded the American Syringomyelia Alliance Project, Inc. A grassroots organization to spread awareness about a rare disorder that Barbara was diagnosed with several years earlier. It would be several more before she learned the cause of her Syringomyelia was Chiari malformation. At the time it was extremely difficult to find information about the disorders. It would be years before the internet and information they were able to find was costly. They wanted to locate others who shared Barbara’s journey and offer support as well as began saving to fund research.

Every May we celebrate Syringomyelia Awareness Month to honor their legacy. Members around the world work on various projects to spread awareness, education and offer support to others. Many states issue proclamation each year naming May Syringomyelia Awareness Month! Volunteers hold local events and others share their stories in publications and social media.

Syringomyelia has a variety of causes and the disorder affects everyone differently. Many are misdiagnosed with other disorders or diseases. To look at an individual with Syringomyelia, you might not even know the extreme symptoms they experience each day. Others may have no symptoms.

We hope that you will join us in May as we continue our mission to improve the lives of lives of persons affected by Syringomyelia, Chiari malformation and related disorders while we find the cure.

2017 Conference Sunday Sneak Peek

The ASAP Chiari & Syringomyelia Conference will take place at the Marriott Long Island hotel on July 19 – 23. Attendees will have access to their choice of presentations, video posters, peer to peer support, special programs for children 5-16 and much more. Here is a quick look at the topics that will be presented on Sunday, July 23.

Sunday, July 23

    Pediatric CM1 and Surgery: why, when and how (learning by a review of more than 500 children, 160 operated on), Laura Valentini, Istituto Besta, Milano
    Rapid Fire Panel about Chiari Surgery, Select Panel
    Co-morbid conditions associated with EDS, Rodney Grahame, UK
    Joint hypermobility and related spectrum disorders: terminology and classification, Marco Castori, Forlanini, Rome
    New classification of EDS and diagnostic criteria for classical and vascular, Clair Francomano, Harvey Institute of Human Genetics
    What are Dysautonomias? David Goldstein, NIH
    Objectives and communication skills by the French advocacy group APAISER (French with English subtitles) Mado Glianton, APAISER (France)
    The Ann Conroy Trust: development of a patient support charity in the UK, Graham Flint, ANN CONROY (UK)
    Topic TBA, Carlo Celada, AISMAC
    Is it Mast Cell Activation Syndrome? Diagnosis and Management of Mast Cell Disorders. Anne Maitland, Mount Sinai
    NIH Common Data Elements, Brandon Rocque, Univ of Alabama
    Engineering-based Methods for Static and Dynamic Assessment of Chiari malformation, Bryn Martin, Akron, Ohio
    A genetic hypothesis for Chiari 1 malformation, Sabrina Giglio, Meyer Firenze
    Should Sports Participation be Restricted? Cormac Maher, University of Michigan
    Intracranial Venous Stenting: Past, Present, and Future, Kenneth Liu, UVA
    Chiari I and Pseudotumor: Neurosurgical perspective Gerald Grant, Stanford University
    Non-Surgical Management of Chiari-related or Postoperative Symptoms, Andrew Ringer, Mayfield

2017 Conference Sneak Peek Saturday

The following is a list of topics and speakers scheduled for Saturday, July 22 at the ASAP Chiari & Syringomyelia Conference in Long Island, NY.
Register Now!
This is a preliminary agenda and schedule to change.

    History of The Definition of The Chiari Malformation presented by Ghassan Bejjani , Pittsburgh
    Pathogenesis and Surgical Treatment of Syringomyelia Associated Adhesive Arachnoiditis presented by Iizumi Koyanagi, Hokkaido, Japan
    Chiari Malformation: Does Size Matter? presented by Dan Heffez, Chiari Institute Of Wisconsin
    Chiari Malformation: Remember Brain Sagging! Presented by Wouter Schievink , Cedars Sinai
    Making the Diagnosis: Selection Criteria for Tethered Cord Syndrome presented by Monica Wehby, Portland, OR
    Tethered Cord Syndrome – Scientific Analysis for Diagnosis and Treatment presented by Shokei Yamada, Loma Linda
    The Clinical Triad of Tethered Cord – TC Panel – Bermans Iskandar, University Of Wisconsin
    and Cormac Maher, University Of Michigan
    Video-poster about Mechanisms of Cognition and Cognitive Function in Chiari Disease and the Role of Decompression Surgery presented by Petra Klinge, Brown University
    The Value of Chiari Research to Patients and Families: The Park-Reeves Study presented by Shannon Chevis, Vanderbilt
    Chiari Malformation and Atlantoaxial Instability: Is There A Cause-Effect Relationship? presented by Atul Goel, India
    Orthostatic Intolerance in the Setting of Chiari Malformation presented by Peter Rowe, Hopkins
    Occipital Nerve Stimulation in Patients with CM1: Experience with Pain Before and After the Decompression presented by Konstantin Slavin, University Of Illinois
    Epigenetics and Regeneration of the CNS presented by Bermans Iskandar, University Of Wisconsin
    CMI and Sports presented by Cormac Maher, University Of Michigan

2017 Conference Sneak Peek Friday

The following is on the schedule for Friday, July 21 during the ASAP Chiari & Syringomyelia Conference in Long Island, NY. Register Now! This is a preliminary agenda and schedule to change.

    Differential Diagnoses Of Headache In The Patient With Chiari I Malformation presented by Fraser Henderson, Maryland
    Peripheral Nerve Stimulation for the Treatment of Refractory Headache in the Chiari Population presented by Alon Mogilner, NYU
    Syringobulbia in Chiari I Abnormalities presented by Arnold Menezes, Univ Of Iowa
    Further, Experience with Trauma to the Head or Spine Causing Conversion to Symptomatic Chiari 1 Malformation or Syringomyelia, presented by Charles Tator, Toronto, Canada
    Pathogenesis And Surgical Treatment Of Syringomyelia Associated Adhesive Arachnoiditis presented by Iizumi Koyanagi, Hokkaido, Japan
    Chiari Malformation: Does Size Matter? presented by Dan Heffez, Chiari Institute Of Wisconsin
    How Should Syringomyelia Be Defined and Diagnosed presented by Jörg Klekamp, Germany
    Questions on the Pathogenesis of Syringomyelia presented by Andrew Brodbelt, UK
    Sleep Apnea and CMI presented by Juan Sahuquillo, Barcelona, Spain
    Toward A Consensus on the Definition of Chiari I Malformation presented by Harold Rekate, Chiari Institute
    Genetic Hypotheses of Chiari Malformations Type I, presented by Allison Ashley-Koch, Duke University
    Transverse Myelitis in Children with Chiari I Malformation presented by Vadivelu Sudhakar, Cincinnati Children
    “Basilar Invagination”, and Craniocervical Instability – Diagnosis and Surgical Treatment presented by Brian Dlouhy, Univ Of Iowa
    Long Term Follow Up In Dogs with Chiari-Like Malformation Having Foramen Magnum Decompression with Cranioplasty presented by Dominic Marino, Canine Chiari Institute
    Neurophysiological Monitoring During Surgery for Chiari Malformation and Syringomyelia: What For? presented by Francesco Sala, (Verona)
    Orthostatic Intolerance in the Setting of Chiari Malformation presented by Peter Rowe, Hopkins
    Intraoperative Monitoring of Craniocervical Fusion With Condylar Screws Placement presented by Marat Avshalumov, At NSPC
    Learning Challenges In CMI presented by David Frim, University Of Chicago

2017 Conference Sneak Peek

Want a sneak peek at some of the speakers and the topics they will present during the ASAP Chiari & Syringomyelia Conference July 19-23?
This is what you will find on Thursday’s agenda:This is a preliminary agenda and schedule to change.

    Syringomyelia Not Associated with Chiari I Malformation Or Arachnoiditis presented by John Heiss, NIH
    Indications for Fusion in Pediatric Chiari I Malformation presented by Richard Anderson, Columbia
    Non-Dural Opening, Current State of The State presented by Neil Feldstein, Columbia
    “Representing and Intervening. How Meets Why, Meets Who ,Meets When”. The Objective Of The Lecture Is To Explore The Relation Between Anatomical Explanations, Clinical Symptoms And Proposed Treatment presented by Jorge Lazareff, UCLA
    Craniocervical Fusion in Adult Complex Chiari and Condylar Screws – Adults presented by Paolo Bolognese, CNSC
    Pathogenesis and Clarification of Chiari Am Formations: Morphometric Analyses Of The Posterior Cranial Fossa And Craniovertebral Junction – Combined With Surgical Management Of Chiari Malformations Based On The Pathogenesis And Mechanisms Of Tonsillar Decent presented by Misao Nishikawa,Osaka, Japan
    SM And CMI: Classification and Clinical Diagnosis presented by Palma Ciaramitaro, Consorzio Chiari Torino
    Incidental CMI presented by Robert Keating, Washington Children
    Fluid Dynamics Ear& Brain, Cochlear Vestibular System And Tinnitus. A Clinical Protocol for Diagnosis and Treatment In Chiari Patients presented by Abe Shulman, SUNY Brooklyn
    Principles of Surgical Management of Chiari I Malformation presented by Ian Heger, Medical College of Georgia
    Physical Therapy Evaluation And Treatment Of The Neck And Upper Extremities For The Person With Ehlers-Danlos Syndrome)
    presented by Kevin Muldowney, Rhode Island
    Syringomyelia: Basics About Pathophysiology, Diagnosis, And Principles Of Surgical Management presented by Tina Loven, St Louis, MO
    Engineering-Based Methods For Static And Dynamic Assessment Of Chiari Malformation presented by Bryn Martin, Akron, Ohio
    EDS (Running Title) presented by Rodney Grahame, UK
    Clinical Outcome Scales And Prediction Tools For Surgical Outcomes In Chiari Malformation presented by Nicholas Wetjen, Mayo Clinic

2014 Awards

Beth Brixius
Tabitha Peters
lee Ann Clutter
Margaret Leisenheimer
Gina Huffman
Cat Becker
Rain Deskins
Kaylee Lemmon
Staci Massi

Michael “Yogi” Borys
Charyl Turner
Lauri Edwards
Megan Jones


Amber Barnes
Jennifer Mucciacciaro
Sharon Sweeten
Jennifer Vasek

Shananne Hutter

Patricia Maxwell

John A Jane, Jr. MD – Medical Advisory Board
Renee Tobias – Board of Directors

Walks Bring Awareness

ASAP volunteers have been busy this spring bringing awareness to many parts of the country by hosting events in their area.

Special thanks to:

Beth Brixius – Syringo-My-What? Steps Across the States – April 5 in Great Falls, Virginia

Heather Leitner – 1st Annual Walk & Roll for a Cure 5k – April 12 in Hurricane, Utah

Tabitha Peters – Syringo 5k Walk & Roll and Kids Lollipop Walk & Roll – April 19 in Peru, Illinois

Yogi Borys – 1st Annual Yogi’s Walk & Roll – April 26 in Geneva, New York

Lauri Edwards & Charyl Turner – Syringo-My-What? Steps Across the States – April 26 in Tulsa, Oklahoma

LeeAnn Clutter – Syringo-My-What? Steps Across the States – April 26 in Kingston, Oklahoma

Margaret Leisenheimer – Syringo-My-What? Steps Across the States – April 27 in Middle Village, New York “The event was great………a little chilly…..but great! LOL Margaret did a really good job! She’s so young! I was expecting a full grown………..and got this effervescent teen! She’s adorable. She made an impression on my kids (23 and 20) and many of my entourage. They are used to seeing me with all my aches and pains and issues. When they saw Margaret, all everyone kept saying is “……..but she’s so young.” Talk about needing awareness! JS”

Laurie Swihart and Cathy Tufts – 3rd Annual ASAP’s Sugar Land Texas Walk and Roll for a Cure – May 3 in Sugar Land, Texas

Rain Deskin – Rain’s Day 1k Walk & Roll for Syringo & Chiari – May 17 in Christiansburg, Virginia

Tutrow family – 5th Annual ASAP Walk & Roll for a Cure – May 24 in Greenfield, Indiana

Gina Huffman – 1st Annual Walk & Roll Lewis Center Ohio – May 31 in Lewis Center, Ohio

Cat Becker – ASAP’s Media, PA Together We Can Walk & Roll for a Cure – May 31 in Media, Pennsylvania

Anna Tannreuther – 3rd Annual Clyde’s Chiari Awareness Walk – June 7 in Middletown, Ohio

Sunshine Matthews – Sunshine’s Charity Run – June 27-29 in Ferguson, North Carolina