ASAP Installs New Officers

Phone: (903) 236-7079

New leadership pledges continuity

Longview, TX February 7, 2018 – The American Syringomyelia and Chiari Alliance Project Board of Directors is pleased to announce election and installation of its new officers. Pursuant to its bylaws, new officers were elected in December 2017. Installation took place during the meeting of the board February 7th, 2018, to be effective immediately. Elected to three-year terms are President of the Board Eric Berning, Vice President Cathy Tufts and Secretary Rich Simon. Annie Chapman will continue in her role as Treasurer until such time that a suitable replacement can be found. Immediate past-president Patrice Schaublin will remain with the organization in the role of Executive Director.

Incoming president Eric Berning first discovered ASAP in 2005 when he attended a support group meeting in Houston, Texas. In 2014, after several years of volunteer service, Eric was invited to join the board of directors. During that time Eric has served on the board first as a member-at-large, then as secretary, before being elected president. “I realized through my own diagnosis and journey that I could serve as an example to others, that these conditions would have an impact on my life but not define my life,” says Berning. He adds, “I look forward to what the future holds for ASAP in our quest to fulfill our mission statement, as well as being instrumental in our continued success.” Outgoing president Patrice Schaublin says, “We look forward to Eric’s leadership; he brings new skills and optimism to our organization. Serving as president is not an easy task. We are deeply grateful to Eric for his past and continued service.”

Incoming vice president Cathy Tufts first began her service to ASAP with a series of successful fundraising walks. Being the mother of children affected by these disorders, Cathy had the strong desire to better serve the community, and joined the board of directors in 2014. “We have accomplished so much as an organization, but there is still so much more to do,” says Tufts. “I look forward to serving ASAP in my new role as vice president and being instrumental in having a positive impact on all those affected and the families so desperately seeking answers.”

Newly elected secretary Rich Simon has served on the board of directors since 2014. “This is such a fantastic group,” says Simon. “It is truly my pleasure to serve this organization to the best of my ability. I look forward to being part of our continued success.”

Outgoing president Patrice Schaublin will continue to serve ASAP in her new role as executive director. “It has been an honor to serve ASAP over these past many years. I am excited to begin a new era and support our new officers in continued service to our community,” states Schaublin. “Please join me in welcoming the new leadership and offering them best wishes for the continued success of ASAP.”

ASAP is a registered 501(c)3 nonprofit organization. Our mission statement is “to improve the lives of persons affected by Syringomyelia, Chiari malformation and related disorders while we find The Cure.”


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Bay Area Support Group Meeting

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

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

Jessica’s 2nd Annual Walk & Roll

On August 13, 2017 Jessica Griffith of Gouverneur, New York held her second walk and roll to benefit those in the syringomyelia/Chiari community. With the help of her family and friends a fun time was provided for all ages. Attendees enjoyed a performance by “Elvis”, music and lots of games in addition to the Walk and Roll.

A special thank you to all those involved!

2017 Jessica’s 2nd Annual Walk & Roll for a cure Sponsors!

Event Photo Gallery:

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