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

2017 ASAP Conference

Conference Speakers

The following speakers have agreed to participate in the ASAP annual conference:

Richard Anderson (Columbia)
Allison Ashley-Koch (Duke)
Marat Avshalumov (IOM at NSPC)
Ulrich Batzdorf (UCLA)
Ghassan Bejjani (UPMC)
Paolo Bolognese (Chiari NSC)
Andrew Brodbelt (Liverpool, UK)
Marco Castori (Rome, Italy)
Palma Ciaramitaro (Turin, Italy)
Brian Dlouhy (Univ. Iowa)
Robert Duarte (NYS Pain Society)
Neil Feldstein (Columbia)
Clair Francomano (Harvey Inst.)
David Frim (Univ. Chicago)
Lorenzo Genitori (Florence, Italy)
Timothy George (Dells’ Children)
Atul Goel (Mumbai, India)
David Goldstein (NIH)
Rodney Grahame (London, UK)
Gerald Grant (Stanford)
Dan Heffez (Chiari Institute, WI)
Ian Heger (MCG)
John Heiss (NIH)
Fraser Henderson (Metro NSG Group)
Bermans Iskandar (Univ. Wisconsin)
Robert Keating (Washington Children)J Klekamp (Quakenbruck, Germany)
Petra Klinge (Brown)
Ilzumi Koyanagi (Hokkaido, Japan)
Roger Kula (Chiari NSC)
Lance LaCerte (Aurora, CO)
Jorge Lazareff (UCLA)
David Limbrick (Wash Univ. St Louis)
Yung Liu (Beijing, China)
Kenneth Liu (UVA)
Yongli Lou (Zhengzhou, China)
Tina Loven (Mercy Clinic, MO)
Cormac Maher (Univ. Michigan)
Anne Maitland (Mt. Sinai)
D Marino (Canine Chiari Institute)
Bryn Martin (Univ. Akron)
Arnold Menezes (Univ. Iowa)
John Mitakides (Beavercreek, OH) Alon Mogilner (NYU)
Kevin Muldowney (Rhode Island) Misao Nishikawa (Osaka, Japan)
Ed Oldfield (UVA)
Fabrice Parker (Paris, France)
Harold Rekate (Chiari Institute, NY)
Brandon Rocque (UAB)
Peter Rowe (Johns Hopkins)
Juan Sahuquillo (Barcelona, Spain)
Francesco Sala (Verona, Italy)
Wouter Schievink (Cedars Sinai)
Victor Shakhnovic (Moscow)
Abe Shulman (SUNY Brooklyn) Konstantin Slavin (Univ. Illinois)
Mark Souweidane (Cornell)
Marcus Stoodley (Sidney, Australia) Charles Tator (Toronto, Canada)
Laura Valentini (Milan, Italy)
Monica Wehby (Portland, OR)
Nicholas Wetjen (Mayo Clinic)
Jeffrey Wisoff (NYU)
Shokei Yamada (Loma Linda, CA)

Chiari Genetic Study

CM1/S Study Participation

The Duke Molecular Physiology Institute (DMPI), formerly the Duke Center for Human Genetics, is actively recruiting families who have TWO OR MORE family members with Chiari type 1 malformation, with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate.

Study participation involves these steps:

Contact the study coordinator.
Provide blood samples from family members both with and without CM1.
Answer questions about family and medical history.
Complete a medical questionnaire.
Review of medical records and MRIs to confirm the diagnosis of CM1
Potentially ask other degree family members (parents, siblings, children) to participate in the study.

If your family meets these criteria and is willing to participate in the study, please contact the study coordinator.

CM1/S Study Coordinator
Heidi Cope, MS, CGC
E-mail: chg_chiari@dm.duke.edu
Phone: (919) 684-0655

New Board Members 2017

The ASAP Board of Directors has added new Board members in recent months.

Bridget Borys was elected in December 2016 while John Caemmerer was reelected in February 2017.

Bridget graduated from SUNY Fredonia in 2007 with her Bachelors in Social Work. She is currently employed by Ontario ARC as a Medicaid Service Coordinator, helping those with developmental disabilities. Bridget lives in Seneca Falls, NY with your husband Michael ‘Yogi’.

Yogi was diagnosed with Chiari and syringomyelia in 2001 when running wind sprints training at the police academy. Thankfully a doctor at the local emergency room knew about Chiari malformation and syringomyelia and ordered the MRI.

In 2007 Bridget and Yogi held their first fundraiser with a friend’s band to raise money for ASAP programs. Since that time she has been fundraising and spreading awareness for both Chiari malformation and syringomyelia. Bridget has helped organize several walks in the past few years. Most recently, with the assistance of her family, she created a Community Fun Day to spread awareness of Chiari malformation, syringomyelia, ASAP, our mission and vision.

Bridget enjoys helping others and tries to see the positive in everything she does. She looks forward to helping others on this amazing journey with ASAP.

John Caemmerer was born and raised in Long Island, N.Y. After getting married, he moved to New Jersey where he raised his family. John now resides in New York again and is self-employed in the construction industry.

John first became involved with the organization when a longtime friend invited him to a fundraising walk. Moved by the personal stories he heard that day, he made the offer to assist with future events. With a background in sales, he was an asset in promoting and developing events. After volunteering for a couple years, he joined the Board of Directors.

John is currently serving on several committees with a special interest in fundraising and raising awareness.
He has served as Chair for the Conference Committee for a number of years. It is John’s belief that while we search for a cure, the work that ASAP performs serves to improve the quality of life for persons affected by SM, CM, and related disorders. He believes that by his service he can help people empower themselves to live a life that is defined by their abilities and accomplishments in spite of their diagnoses.