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

Physiatrist

A physiatrist is a physician who specializes in physical medicine and rehabilitation. They can play an important role in the battle those with Chiari and syringomyelia face on a daily basis. During the 2014 ASAP conference in Princeton, New Jersey, Harry Schwartz, MD – Clinical Director, Spinal Cord Injury, MossRehab Einstein Healthcare Network, expanded on the role he plays in a patient’s care. Check out his video now.

President’s Letter December 2013

As another year comes to a close I would like to take this opportunity to wish each and all a safe, happy, loving and symptom-free holiday season. I know sometimes it is hard to count your blessings, but know that each one of you reading these words is part of a community that offers you comfort and support. It has been our goal to provide everyone the love and support that we all need when times get tough.

It has been a busy and exciting year for ASAP. We have continued our social media support outlets, maintaining our level of support through various Facebook pages and our bulletin board. We have continued our legacy of providing telephone support and expanded our base of support groups. Our website has been completely revamped, providing a place where people can feel comforted while investigating information relevant to their disorders in a logical, organized and factual manner. Four new research grants totaling over $100,000 were awarded. We recently held our annual conference which commemorated 25 years of service to our community including 25 annual conferences, 25 years of research, 25 years of raising awareness, 25 years of support, 25 years of new friends, and 25 years of fundraising to achieve our goals. We are honored to have served you during this time and look forward to many more years of service.

All of which leads me to what we are doing to continue our mission. Recently we increased our social media presence with a group page dedicated solely to persons affected by syringomyelia without Chiari. This page allows people to interact with others who share their experiences. Often times, symptoms of both syringomyelia and Chiari are lumped together causing confusion about the singular effects of syringomyelia. This page will provide a site to share stories, compare experiences, and offer a forum for support and encouragement.

We are pleased to announce the Sy-ringo-my-What?? Steps Across the States walk-a-thon. It is our hope that each state will be represented in this national event. This walk will be held April 26, 2014. We are currently in the planning stages and look forward to it being a success. This is an opportunity for all those affected by syringomyelia to raise funding, awareness, and education about the devastating effects of this disorder. If you are interested in hosting a Sy-ringo-my-What?? Steps Across the States event in your area please contact me. In order to allow adequate preparation, please contact me prior to December 31, 2013. As our way of thanking you for continuing our mission, monies raised through this walk will qualify for the L.E.A.R.N. Points Program thereby giving you the opportunity to attend our next annual conference.

Before I close, I would like to take this opportunity to ask each of you to consider a year- end show of support with a donation to ASAP. There is no amount that is too large or too small and I am pleased to say that 87% of any donation goes directly to our programs, including but not limited to research, support, conference, etc. It is through your generosity that we have come this far. Twenty five years ago, when this organization was founded by Barbara and Don White, very few people had ever heard of these disorders. Never have we or the medical community had the understanding of these disorders that we have today. Thank yourselves and your generosity for bringing us to the level of awareness and research that we currently enjoy. Unfortunately, even with everything that has been accomplished, our mission is ongoing. So please take a moment, go to the website, make a donation, and show your support.

Lastly, I wanted to take this moment and offer thanks to our community, their caretakers and loved ones, our staff, boards and doctors for seeing us through yet another year. I think of you all with thoughts of deep gratitude and fond appreciation for all you have done, still do, and will do in the future for all of those persons, who we are related to through this common bond.
Gentle Hugs always,

Patrice
Patrice_Schaublin@ASAP.org

The Arts and Your Health

I was reading an article from the NIH about how the arts affect your health.  It says studies have found evidence that singing releases substances that serve as the brain’s own natural pain-killers and when we listen to music, levels of molecules important for fighting infection can rise.  Scientists are also studying how art therapy can help to ease pain and stress and improve quality of life.  and then there’s writing.  Expressive writing – writing about traumatic, stressful or emotional events – has been shown to have a number of health benefits, from improving symptoms of depression to helping fight infection.  Remember that the arts are no substitute for medical help but they can still bring health benefits.  You don’t have to be good at them for them to be good for you.

KFACC Summer Connections

Kids For A Cure Club Summer Newsletter

I am excited to introduce myself as a new volunteer with ASAP and that I will be chairing the Kids For A Cure Club. I live in Kansas with my husband, Kevin, and our four children: Christian (16), Julianne (13), Megan (11), and Laci (7). I have been a stay at home wife and mother since I was diagnosed in July 2011 with syringomyelia/ syringohydromyelia. My syrinx was from C4 to T10. I had surgery to place a shunt at C4-C5 in August 2011. I still have a syrinx in my cervical spine that may never go away. I have (mostly) learned to live with SM and hope to help others do the same. I chose to work with the Kids Club because I cannot imagine any child having to grow up with the chronic pain, that SM, CM and related disorders causes, because, even as an adult, it can be quite difficult.

I would like to do things that allow the children to be creative and maybe even choose some of their own activities. Something that I would love to do first is to have each child write a letter to me about themselves. Of course, this is optional but, I would reward each child for their efforts in letting me get to know them. I would love to know each of their stories, what is their illness and how they have learned to cope, what do they want to be when they grow up, hobbies, likes/dislikes, what they do for fun, favorite foods, movies, pets, favorite color, talk about the conference (if they attended) and what they liked best/least, did they meet any new friends, what did they learn…etc…whatever the children feel like sharing about themselves. Just a page or two (more if needed is great too!). I think it would be great if a picture of the child could be included with their letter. I really want to know them so I can do a good job for them. You can send them directly to my email address below or mail them to the office and they will forward them to me. ASAP, PO Box 1586, Longview, TX. 75606-1586.
Some of my other plans include a poetry contest, short story contest, and an ASAP poster contest. I have a few ideas for fundraisers and possible donations.

Since I am new to ASAP, I would like for everyone to know that I am open to suggestions or ideas that may change/ improve my own ideas. This is an amazing cause and it is so important that it be performed as a group effort. Please feel free to contact me with questions, ideas, suggestions, or if you need help with a project.

I am excited and proud to be a volunteer with ASAP and I look forward to working with everyone to improve the daily lives of all those affected while we are in search of a cure.

Sincerely,
((Gentle Hugs)),

Monica Reents
ASAP Kids Club Chair
Monicareents.kidsclub@gmail.com

Click here to view the KIDS For A Cure Club Newsletter

For more information about the KIDS For A Cure Club click here.

Become an ASAP Member

Membership in the American Syringomyelia & Chiari Alliance Project is free. Request a free information package and sign-up for the newsletter. That’s all it takes. Not sure if you want to be a member? Just request a free information package. You will receive it in the mail. Once you read about the organization and what we do and decide you want to be a part of our cause, return the membership form.