American Syringomyelia & Chiari Alliance Project

Call Website Contact the organization

American Syringomyelia & Chiari Alliance Project Providing research, education and support for Syringomyelia and Chiari malformation since 1988. www.ASAP.org

ASAP is the leading 501(c)(3) donor-supported organization dedicated to promoting awareness, advancing research and providing support to individuals and families affected by syringomyelia and Chiari malformation. Funding two million dollars in research, ASAP aims to improve the quality of life for those impacted by these conditions through education and support, advocacy and collaborative initiatives with the medical community. See our (private) main Facebook support group page: https://www.facebook.com/groups/asapcmsm

🌎 Today World Spine DayYour spine plays a vital role in movement, balance, and protecting the spinal cord. Today, we’re ...
10/16/2026

🌎 Today World Spine Day

Your spine plays a vital role in movement, balance, and protecting the spinal cord. Today, we’re raising awareness of spinal health and conditions that can affect it, including syringomyelia, scoliosis, tethered spinal cord, and other related disorders.

For those living with these conditions, everyday activities can come with unique challenges. Greater awareness, early recognition, research, and access to informed medical care can make a meaningful difference.

💙 Let’s shine a light on spinal health, support those affected by spinal disorders, and work toward better treatments and improved quality of life for all.

https://asap.org/disorders/related-disorders/

What happens when Chiari surgery doesn’t provide the expected results? 🧠In this presentation from ASAP’s 38th Annual Vir...
10/09/2026

What happens when Chiari surgery doesn’t provide the expected results? 🧠

In this presentation from ASAP’s 38th Annual Virtual Conference, Brian Dlouhy, MD, explores why Chiari surgery can fail—including persistent CSF obstruction, inadequate decompression, craniocervical instability, tethered cord, elevated intracranial pressure, and other diagnoses.

Learn how a systematic postoperative evaluation can help identify the underlying cause and guide treatment decisions.

🎥 Watch now: https://www.youtube.com/watch?v=H0TdV9TB66E&list=PLE0bvX

University of Iowa Health Care University of Iowa Health Care Stead Family Children's Hospital

Could a CSF pressure disorder be mimicking Chiari malformation or syringomyelia? In this presentation from ASAP’s 38th A...
10/07/2026

Could a CSF pressure disorder be mimicking Chiari malformation or syringomyelia?

In this presentation from ASAP’s 38th Annual Conference, Linda Gray, MD, discusses secondary causes of Chiari and syrinx, imaging findings that can help identify them, and why recognizing these underlying conditions may influence treatment decisions.

🎥 Watch the presentation to learn more.
https://www.youtube.com/watch?v=bXS4_zBpgd0

Duke Neurosurgery Duke Spine Duke University Hospital

What happens when syringomyelia occurs without Chiari malformation?Ulrich Batzdorf, MD, discusses Primary Spinal Syringo...
10/02/2026

What happens when syringomyelia occurs without Chiari malformation?

Ulrich Batzdorf, MD, discusses Primary Spinal Syringomyelia—a less common form of syringomyelia that can present unique challenges for both patients and physicians.

Dr. Batzdorf explores potential causes, including spinal injuries, infections, and bleeding within the spinal canal, and explains how disruption or obstruction of normal cerebrospinal fluid (CSF) circulation can contribute to the development of a syrinx.

🎥 Watch this insightful presentation on ASAP’s YouTube channel: https://www.youtube.com/watch?v=bSyFN4gk9mM

David Geffen School of Medicine at UCLA UCLA Health

09/30/2026

Chiari Malformation is more than a headache. 💜

It can affect the brain, spinal cord, CSF flow, balance, coordination, and everyday life—and its impact can look very different from one person to another.

This Chiari Awareness Month, help us shine a light on what it really means to live with Chiari. Learn. Listen. Share.

💜 September is Chiari Awareness Month.

Chiari Malformation Awareness Month 💜🧠 A "Chiari headache" is often felt at the back of the head, around the base of the...
09/28/2026

Chiari Malformation Awareness Month 💜

🧠 A "Chiari headache" is often felt at the back of the head, around the base of the skull, and may extend into the neck and shoulders. The pain can be sharp, stabbing, throbbing, or feel like intense pressure or a bursting sensation.

😮‍💨 One characteristic feature is that the headache may be triggered or made worse by coughing, sneezing, straining, laughing, bending over, or lifting, which can increase pressure inside the head.

🕗 For some people, the pain comes on suddenly and lasts only seconds or minutes, but may happen repeatedly. Others may experience a more persistent, dull headache with episodes of more intense pain.

👁️👂Chiari headaches may also occur along with neck stiffness, dizziness, balance problems, nausea, visual disturbances, or ringing in the ears (tinnitus).

Understanding the different ways Chiari can present is an important part of awareness. 💜

📖 https://asap.org/disorders/chiari-malformation/

September is Chiari Malformation Awareness Month. 💜For many people living with Chiari, the challenges aren’t always visi...
09/25/2026

September is Chiari Malformation Awareness Month. 💜

For many people living with Chiari, the challenges aren’t always visible. Symptoms can affect daily life in ways that others may not see or understand.

That’s why sharing our stories matters. Every story helps build understanding, raise awareness, and remind others living with Chiari that they are not alone.

Help us make Chiari more visible. Share your story. Share information. Start a conversation. 💜

⚠️ Check the privacy settings on your post and remember to TAG US so we can share your story with ASAP patients!

https://asap.org/disorders/chiari-malformation/

Chiari can look different from person to person.Some people with Chiari malformation have significant symptoms, while ot...
09/24/2026

Chiari can look different from person to person.

Some people with Chiari malformation have significant symptoms, while others may have few or none. Symptoms can also change over time, making Chiari difficult to recognize.

Possible symptoms may include:

🧠 Headaches, especially pain at the back of the head that may worsen with coughing, sneezing, or straining
💫 Dizziness, balance problems, or difficulty walking
👁️ Vision changes or sensitivity to light
👂 Tinnitus or other hearing changes
🗣️ Difficulty swallowing, speaking, or coordinating movements
💪 Numbness, tingling, or weakness in the arms or legs
😴 Fatigue and sleep-related problems
🫁 Breathing difficulties or sleep apnea
❤️ Changes in heart rate or blood pressure
🤕 Neck pain and other chronic pain

Chiari can also occur alongside conditions such as syringomyelia, EDS, POTS, and other related disorders, which can add to the complexity of symptoms.

Symptoms alone cannot diagnose Chiari. A medical evaluation and appropriate imaging are important for understanding whether Chiari may be contributing to someone's symptoms.

📑 https://asap.org/disorders/chiari-malformation/

Address

PO Box 1586
Longview, TX
75606

Telephone

+19032367079

Website

Alerts

Be the first to know and let us send you an email when American Syringomyelia & Chiari Alliance Project posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to American Syringomyelia & Chiari Alliance Project:

Shortcuts

Sponsored

Share

Category