Conference Registration Reduced

ASAP has reduced the cost of registration to our 31st annual conference, thanks to a generous sponsor! Not only is the registration fee lower but you also have the opportunity to attend free. How does that work? ASAP will waive registration fee that includes opening dinner reception (Wednesday), speaker presentations, daily breakfast and banquet dinner (Friday). Every paid adult registration for the ASAP Chiari & Syringomyelia Conference in Philadelphia will be placed into a monthly drawing. We will draw one name live at the end of February, March, April, May and June. That’s five lucky registered members who get to attend for FREE! The earlier you register the more chances you have to win. Don’t delay – Register today!

Next Generation Making a Difference

Emma-Leigh is a a 15 year old diagnosed with syringomyelia. In October she volunteered at a local haunted house to raise money and awareness for ASAP. The haunted house is run by the United Volunteers of Maine and the volunteers select the nonprofit they want to received their compensation. Emma’s mother wrote, “Halloween is Emma-Leigh’s favorite celebration… she enjoyed raising every penny.”

Miss Teen Yucaipa

My name is Elisa Torrance and I am so honored to be the 2019 Miss Teen Yucaipa Titleholder!

I am a Sophomore at Yucaipa High School who is an athlete and often thought of as an “old soul” due to my love for tradition! I am a classic girl who finds pearls appropriate at every occasion. I am absolutely ecstatic to be representing my community!

I will be promoting my platform, “American Syringomyelia & Chiari Alliance Project”

This platform has a special place in my heart as I personally was diagnosed at eight years old with Syringomyelia. A chronic progressive spinal disease.

This will increase awareness towards finding a cure and support others to understand we can get through this together! As you can grow STRONGER 💪🏼

💙 Elisa Torrance 💛
Miss Teen Yucaipa 2019

1st Cruising for Chiari in Augusta

On September 15th, we had our 1st Cruising For Chiari Motorcycle ride to raise awareness for Chiari. It was a small group of about 20 riders. It was a gorgeous ride and the weather was perfect. While my hope was for a larger group…any form of awareness is a movement in the right direction. Fun was had by all and we even raised some money for ASAP.

Molly’s 4th Annual Walk & Roll

On September 15 Molly Lichtenstein and family hosted their 4th annual walk to raise awareness in Maryland. Molly works hard every year to make her walk more successful and once again she has surpassed her goals.

Special Thanks Molly’s 4th Annual Walk & Roll sponsors:

Recreation Complex

Silver Sponsor Molly’s Walk 2018

Silver sponsor Molly’s Walk 2018

Silver sponsor Molly’s Walk 2018

Silver Sponsor Molly’s Walk 2018

Silver Sponsor Molly’s Walk 2018

Bronze Sponsors

Brass Sponsors

Friends of ASAP

Law Offices of Steve Gittleson
Healing Hands Chiropractic
Birchwood Lawncare Inc

Thank you to all participants:


Cosponsors scientific meeting

In the interest of supporting the CM/SM community, ASAP will cosponsor the

Scientific/ Medical Meeting

June 2019

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.

Chiari Awareness Month 2018

The American Syringomyelia & Chiari Alliance Project, Inc. is seeking your help in getting every state’s government office to declare September the official month for Chiari Awareness. We have been doing this for several years with great success. Unfortunately it has be be renewed every year.

What is a Proclamation?

A proclamation is an official declaration issued by a government office. By getting each state to do a proclamation for Chiari Awareness we will be raising priceless awareness about a disorder that affects many lives. We need your help to make this a success. Most states have online proclamation forms that can be found on the governor’s website. If you are interested in helping this endeavor please contact for more information.

2018 Conference Speakers updated

four more speakers have confirmed to present at the ASAP Chiari & Syringomyelia Conference this July!

David D. Limbrick, MD, PhD – Professor of Neurological Surgery and Pediatrics
Neurosurgeon-in-Chief, St. Louis Children’s Hospital
Neurosurgery Residency Associate Director

Petra Klinge, MD, PhD – Associate Professor of Neurosurgery at the Warren Alpert Medical School of Brown University.

Vibhor Krishna, MBBS – As a neurosurgeon, I specialize in neuromodulation and functional neurosurgery. When it comes to patient care, empathy is fundamental to my approach and interaction with patients. As a clinician-scientist, I’m involved in patient-centered research to improve and advance our care. I’m very passionate about discovering new treatments for conditions that were originally thought to have no cure.

Gabe Haller – Geneticist Washington University School of Medicine, St Louis, Missouri