You can now view video of lectures presented during the American Syringomyelia & Chiari Alliance Project’s 31st Annual Conference hosted by Erol Veznedaroglu, MD, FACS, FAANS, FAHA on the ASAP YouTube Channel.
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.
SAVE THE DATE
ASAP Chiari & Syringomyelia Conference
July 24-27, 2019
Philadelphia (Center City), Pennsylvania
Cosponsors scientific meeting
In the interest of supporting the CM/SM community, ASAP will cosponsor the
Scientific/ Medical Meeting
Hosted by Marcus Stoodley, M.D., and Lynne Bilston, M.D., this meeting will bring specialists together to challenge, have candid discussions, and share new ideas. This meeting will be cosponsored by COH, ASAP, Conquer Chiari and the Canadian EDS group, ILC Foundation. It will be held in Buffalo, NY .
We are proud to join and contribute with other leaders in our community to better serve our community as a whole. Through greater partnerships we can achieve greater results. It is ASAP’s Board of Directors belief that this investment in partnerships will have a positive impact far greater than each sponsor working separately. Simply a case of the whole being greater than the sum of its parts. We look forward to sharing those results.
Help us to spread the word by printing and sharing our flyer with your medical team.
2018 conference flyer
Join ASAP and VCA SouthPaws for our second annual fundraiser for dogs and people affected by Chiari Malformation and Syringomyelia!
May 5th at 11 AM, BLUEMONT PARK, ARLINGTON Virginia!
Dr Lauren Talarico will present findings from the first annual Kicks & Licks research grant. Activities for families and their fur babies will include
· Photography Booth
· Agility Course
· Leash Lessons
· Paw Painting
· Pack Walk @ 11:30 AM
· Music, Food and More!
Or create a team to start you own fundraising campaign. The top fundraiser wins a mini photo shoot with Outside the Lines Pet Photography!
Other great prizes include gift cards, doggie accessories and even an MRI from Animal Scan!
Spread the word and RSVP on Facebook click to visit our FaceBook event page!
Volunteers needed, contact firstname.lastname@example.org for info.
The ASAP Bay Area Support Group will meet January 11, 2018 from 5 – 7 pm PST at the Stanford Children’s Health – Lucille Packard Children’s Hospital – Stanford, California.
Gerald Grant, MD, FACS, Neurosurgeon and Associate Professor of Neurosurgery at the Stanford University Medical Center will speak during the last hour with an open question and answer session. This event is FREE to the public.
RSVP required! Michele Raye bay_area_support@ASAP.org
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
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
The following is a list of topics and speakers scheduled for Saturday, July 22 at the ASAP Chiari & Syringomyelia Conference in Long Island, NY.
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