2016 ASAP Chiari & Syringomyelia Conference

Thank you to Kohl’s for providing volunteers to assist during the conference.

Drs Ulrich Batzdorf and Arnold Menezes have been speaking at ASAP conferences for over 25 years.

Many of those years Dr Batzdoft has celebrated his birthday with us.

Dr Gerald Grant hosted this year’s conference.

2016 Conference Speakers

A very special thank you to the speakers who made the ASAP Chiari and Syringomyelia Conference world class! The meeting was recorded and videos will be available online later this year or early 2017.

Ulrich Batzdorf, MD -– Professor of Spinal Neurosurgery, UCLA School of Medicine, Los Angeles, CA

Sumit Bhargava, MD — Clinical Associate Professor, Pediatrics – Pulmonary Medicine, Stanford University, Stanford, CA

Nancy Block, PT — Silicon Valley EDS Support Group

Paolo Bolognese, MD -– Neurosurgeon, Director of the Chiari Neurosurgical Center NSPC, Lake Success, NY

Ian Carroll, MD, MS — Assistant Professor of Anesthesiology, Perioperative and Pain Medicine at the Stanford University Medical Center, Stanford, CA

May Casazza, NP -– Neurosurgery, Stanford Children’s Health, Stanford, CA

Sam Cheshier MD PhD — Assistant Professor of Neurosurgery, Stanford University, Stanford, CA

Brian Dlouhy, MD — Assistant Professor, Neurosurgery, University of Iowa Children’s Hospital, Iowa City, IA

Michael Edwards, MD — Lucile Packard Children’s Hospital Professor in Pediatric Neurosurgery, Stanford University, Stanford, CA

Karen Friday, MD -– Cardiac Electrophysiologist, Stanford University, Stanford, CA

Timothy George, MD -– Medical Director of the Pediatric Neurosurgery Center of Central Texas at Dell Children’s, Austin, TX

Brenda Golianu, MD — Associate Professor of Anesthesiology, Perioperative and Pain Medicine (Pediatric) at the Stanford University Medical Center, Stanford University, Stanford, CA

John D Heiss, MD -– Head Clinical Unit, Surgical Neurology Branch, NINDS/ NIH, Bethesda, MD

Nicole Hodgeboom, CPNP, CNS — Pediatric Nurse Practitioner, Integrated Pediatric Pain and Palliative Care Team Stanford University, Stanford, CA

David Hong, MD — Clinical Assistant Professor, Neurosurgery, Stanford University, Stanford, CA

Bermans Iskandar, MD – Director of the Pediatric Neurosurgery Program, University of WI, Madison, WI

Line Jacques, MD — Professor of Clinical Neurological Surgery, Chief of Peripheral Nerve and Pain Surgery University of California, San Francisco, CA

Susy Jeng, MD — Clinical Assistant Professor, Neurology & Neurological Sciences, Stanford University, Stanford, CA

Robert Keating, MD -– Chief of Neurosurgery, Children’s National Medical Center, Washington, DC

Roger Kula, MD -– Director, the Chiari Institute, Great Neck, NY

Jeff Lazarus MD, FAAP -– Pediatrician, Medical Hypnosis Specialist, Menlo Park, CA

AnhThu, Lewis, NP -– Pain Management, Stanford University, Stanford, CA

Dave Limbrick MD — Chief, Pediatric Neurosurgery, Associate Professor, Neurological Surgery, Associate Professor, Pediatrics Neurosurgeon-in-Chief, St. Louis Children’s Hospital, Washington University, St. Louis, MO

Tina Loven DO -– Neurological Surgeon, Mercy Hospital, Springfield, MO

Arnold Menezes, MD — Vice Chairman, Professor of Neurosurgery, University of Iowa Carver College of Medicine, Iowa City, IA

Harold Rekate, MD — Professor, Hofstra Northwell School of Medicine, Great Neck, NY

Doug Sidell, MD -– Associate Professor Pediatric Otolaryngology/Head Neck Surgery, Stanford, Palo Alto, CA

Aintzane Urbizu, PhD -– Postdoctoral Research Fellow, Duke, Durham, NC

Anand Veeragavu, MD -– Stanford University, Stanford, CA

Erol Veznedaroglu, MD, FACS, FAANS, FAHA — Director, Drexel Neurosciences Institute; Robert A. Groff Chair in Neurosurgery, Philadelphia, PA

Selda Yildiz, PhD -– Georgia Institute of Technology, Atlanta, GA

An last but definitely not least, Gerald Grant, MD, FACS, of Stanford University School of Medicine to made it all happen!

ASAP 2016 Volunteer Awards

Each year we take time to honor those who truly make ASAP shine – our volunteers!

Our 2016 recipients are:

Barbara White Award – ASAP’s most prestigious award. It is given in recognition of outstanding contributions to further the efforts of our co-founder, Barbara White. Recipients demonstrate long-term commitment to the cause by being active in many areas of the organization. This year we are honored to give the award in memory of a lady who served as a support group leader, Board Director and parent of a child with these disorders. She was a true example of strength in gentility, courage in grace and lovingly loyal.

    Renee Tobias

Key Volunteer Awards – These volunteers play a vital role in helping ASAP open new doors through their service and contributions.

    Michael “Yogi” Borys
    Bridget Borys

Shining Star Volunteers – A shining example of volunteerism at its best, these volunteers continuous efforts go above and beyond.

    Molly Lichtenstein
    Sheila Raineyong>

Visionary Awards – Volunteers who are committed to furthering the goals of ASAP by donating their time and talents to keep ASAP moving forward.

    Lisa Dunton-Roy

Helping Hand Volunteers – Our Helping Hand volunteers help keep ASAP running smoothly! By giving their time, energy and/or talents, they help us to further our mission.

    Patti Davis
    Christine Grabowski
    Ann Humphries
    Michele McGraw
    Staci Nein
    Austin Rodriguez
    Wendy Schwoyer
    Lauren Talarico, BS, DVM, DACVIM
    Connor Yung

Outgoing Board Members – The Board of Directors is the final authority on operation of the American
Syringomyelia Alliance Project, Inc. (“ASAP”). It has complete responsibility for the control and management of the affairs, funds and property of ASAP including, but not limited to, final approval of the budget and other fiscal matters, approval of all policies, and delegation of policy implementation. Board members serve a 3 year term and can serve two continual terms.

    Lori Tutrow – term: 2012-2015
    John Heiss, MD – term: 2008-2015

2016 Webinar

ASAP conference ONLINE!

Big news!

ASAP, in our continuing commitment to our community, is offering the ASAP Chiari & Syringomyelia Conference ONLINE in webinar form this year!

Many have expressed a deep desire to attend the conference, but the cost of travel and lodging have been prohibitive. We heard you, which is why we are offering this unique opportunity. Here’s the catch, we have a maximum of 100 and a minimum of 25 registrants. If we don’t meet the minimum, the webinar will be cancelled (full refunds will be issued for paid registrations).

This will be a two-step registration process:

    1) Click the following link to ‘Register for the Webinar’. Fill out required information.
    https://attendee.gotowebinar.com/register/1747539967765094659
    Note: It is the sole responsibility of the user to ensure your system meets all necessary requirements to participate in the webinar. See system requirements below
    2) Click the following link to pay for the Webinar. You will not receive any information until payment is completed.
    http://asap.org/index.php/get-involved/conference-register/
    Fill out all required information and select webinar($160) and Add to cart. Payment will be processed through PayPal.

Once payment has been processed you will be sent an email containing the details and password for the webinar.

Act quickly; registration for this online event will close on Wednesday July 20th at 5:00pm EST

SYSTEM REQUIREMENTS

Operating system

    Windows 7 – Windows 10
    Mac OS X 10.9 (Mavericks) – 10.11 (El Capitan)

Web Browser

    Google Chrome v34 or later
    Mozilla Firefox v34 or later
    Internet Explorer v8 or later
    Microsoft Edge
    Apple Safari v6 or later

Internet connection

    1 Mbps or better (broadband recommended)

Software

    GoToWebinar desktop app, JavaScript enabled

Hardware

    2GB or more of RAM
    Microphone and speakers (USB headset recommended**) if unmuted by the organizer

Dancin Power

Dancin Power teaches interactive dance classes 100% free of charge to hospitalized children, including patients facing chronic and life-threatening illnesses. By carefully adjusting all movements to better match each patient’s needs, Dancin Power is committed to putting physical activity within the reach of all children at the hospital regardless or their physical challenges. Our Mission is to use the power of music and dance by teaching interactive dance lessons to hospitalized children to help improve their quality of life.

Dancin Power will work with the children during the ASAP Chiari & Syringomyelia Conference in San Francisco. Come participate and learn the power dance can have in your life.

To find out more about Dancin Power visit http://www.dancinpower.org/

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.

Oklahoma Support Group to hold meeting

Support groups play a vital role in fulfilling the needs for those diagnosed with these disorders. Special thanks to the founding support group leader, Amber Barnes for all she does for ASAP, the OKC group and the CM/SM community. Ann Humphries has agreed to take over the role of support group leader and has a meeting planned for next month. She is also looking at possibly having one toward the end of March if things work out. We will keep everyone posted. Be sure to check Upcoming Events for all support group meeting dates.

Scholarships for Students with Disabilities

With more adaptive technologies and progressive legislature, prospective college students with disabilities have countless resources available to make the transition to higher education less stressful. Affordable Colleges Online just updated their College Resources for Students with Disabilities guidebook. You can see the guide here: http://www.affordablecollegesonline.org/college-resource-center/resources-for-students-with-disabilities/

They’ve also created a complementary guide to scholarships and financial aid for students with disabilities to help students and their families better understand the vast number of financial aid options available to them. Key elements of the guide include:

– A comprehensive review of all of the scholarships available, listed by disability
– Amounts awarded and deadlines for each scholarship
– Debt-forgiveness options for those who acquired a disability post-graduation

You can find this guidebook here: http://www.affordablecollegesonline.org/college-resource-center/affordable-colleges-for-students-with-disabilities/