UK Doctor Raises Funds for ASAP

Andrew Brodbelt is a Consultant Neurosurgeon who became interested in patients with syringomyelia and Chiari malformations when he did his PhD in post traumatic syringomyelia in Sydney, Australia with Marcus Stoodley. In July Dr Brodbelt spoke at the ASAP Chiari & Syringomyelia Conference XXIX in Long Island, New York. He also competed in the ‘tougher mudder” that same week which he completed in just two hours. In order to ‘make a difference’ for those in the Chiari / Syringomyelia Community Andrew Brodbelt created a just giving page with proceeds going the American Syringomyelia & Chiari Alliance. If you would like to show your support visit Just Giving

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

2015 Conference Host

Meet Our Host for ASAP’s July 2015 Conference ( Chiari and Syringomyelia)
Cormac Maher, M.D.
Associate Professor, Neurological Surgery
Biography

Cormac O. Maher, M.D. is a neurosurgeon specializing in the surgical treatment of children. Dr. Maher’s major areas of clinical interest include the surgical treatment of arteriovenous malformations, Moyamoya disease, cavernous malformations, pediatric brain tumors, congenital malformations including cysts and Chiari malformation, spinal dysraphism, and hydrocephalus.

Dr. Maher is a graduate of Georgetown University, where he obtained a Doctorate of Medicine and was elected to the Alpha Omega Alpha Medical Honor Society. He completed his surgical internship and neurosurgical residency at the Mayo Clinic in Rochester, Minnesota. Soon thereafter, he moved to Boston, Massachusetts for dedicated training in pediatric neurosurgery under the direction of R. Michael Scott, M.D. of Harvard University and Boston Children’s Hospital. During his time in Boston, Dr. Maher served as the Shillito Staff Associate in the Department of Pediatric Neurosurgery at Children’s Hospital Boston. After completion of his training at Boston Children’s Hospital, Dr. Maher completed fellowship training in cerebrovascular neurosurgery under the direction of Arthur L. Day, M.D of the Brigham and Women’s Hospital and Harvard University.

Dr. Maher is an active clinician-investigator and has made over 100 presentations of his work at national medical meetings. He has published a large number of scientific articles as well as book chapters on a wide variety of neurosurgical topics. His work has appeared in many medical journals including the Journal of Neurosurgery, Stroke, Neurosurgery, and Neurology.

Dr. Maher is a diplomat of both the American Board of Neurological Surgery as well as the American Board of Pediatric Neurosurgery. He is a member of the American Society for Pediatric Neurosurgery. He is a fellow of the American College of Surgeons, the American Association of Neurological Surgeons, and the American Academy of Pediatrics.

Dr. Maher lives in Ann Arbor with his wife and 3 children.

2014 Awards

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

VISIONARY AWARDS
Michael “Yogi” Borys
Charyl Turner
Lauri Edwards
Megan Jones

SHINING STAR VOLUNTEERS

Amber Barnes
Jennifer Mucciacciaro
Sharon Sweeten
Jennifer Vasek

KEY VOLUNTEER
Shananne Hutter

BARBARA WHITE AWARD
Patricia Maxwell

OUTGOING BOARD MEMBERS
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