American Syringomyelia & Chiari Alliance Project

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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 initiati

ves with the medical community. See our (private) main Facebook support group page: https://www.facebook.com/groups/asapcmsm

06/07/2026

🚨 Announcing exciting new research for neurosurgery advancements.

Project Title: Myodural Bridge (MDB) Inflammatory Pathology in Chiari I Malformation – RNA-based Study of MDB Tissue
Grant Recipient: Patricia Sullivan, MD; CoPIs: Margot Martinez-Moreno, PhD; Petra Klinge, MD
Institution: Brown Health University

The impact of this work is twofold: it may help unravel whether Chiari malformation is a condition that involves whole-body connective tissue and inflammatory processes rather than a purely local structural problem, and it may enable the development of more precise, biologically targeted therapies.

🔎 Read more about this study and other current research projects: https://asap.org/current-research/
👩‍⚕️Dr. Petra Klinge will be speaking at the ASAP 2026 Virtual Conference July 28-29: https://tinyurl.com/ASAPConference2026

Brown University Brown University Health

06/04/2026

🎉 Congratulations to the recipients of the 2026 Timothy M. George Fellowship Award!

Presented by the American Syringomyelia & Chiari Alliance Project (ASAP), this award supports promising medical students, residents, and neurosurgeons dedicated to advancing research in syringomyelia, Chiari malformation, and related disorders.

Through their commitment to scientific discovery and improved patient care, these researchers are helping shape a brighter future for our community.

Please join us in celebrating this year's award recipients and their important contributions to the field! 👏💙💜

https://asap.org/current-research/fellowships-and-awards/

See Dr. Ravindra live during ASAP's free virtual conference: https://tinyurl.com/ASAPConference2026

University of Utah Neurosurgery University of Utah Health

05/29/2026

Many people with syringomyelia fight battles that cannot be seen — persistent pain, neurological symptoms, exhaustion, uncertainty, and the emotional weight of navigating life with a rare condition.

To everyone living with syringomyelia: your struggle is real, your courage is extraordinary, and you are not alone. 💙

Thank you for supporting us during

www.ASAP.org

05/28/2026

The most common cause of syringomyelia is Chiari malformation. 🧠

In CM, the lower part of the brain (cerebellar tonsils) extends downward into the spinal canal. This can block the normal flow of cerebrospinal fluid (CSF) around the brain and spinal cord.

💧 When CSF flow becomes disrupted, pressure changes may force fluid into the spinal cord, leading to the formation of a fluid-filled cyst within the spinal cord (syrinx).

Not everyone with Chiari malformation develops syringomyelia. In fact, many people are diagnosed with Chiari only after symptoms of syringomyelia appear.

Other common causes of syringomyelia include:
🔹 Spinal cord injury (SCI)
🔹 Tethered cord syndrome
🔹 Spinal tumors
🔹 Arachnoiditis and scar tissue
🔹 Meningitis or other infections affecting the spinal cord
🔹 Obstruction of normal cerebrospinal fluid (CSF) flow

Symptoms and progression can vary widely, which is why awareness and early evaluation are so important.

05/27/2026

Syringomyelia can be a serious and disabling complication of spinal cord injury (SCI). While many people with SCI may develop a cyst at the injury site, only a small percentage develop syringomyelia — when that cyst fills with fluid, expands, and begins damaging the spinal cord.

A growing syrinx can lead to:
🔹Pain
🔹Weakness
🔹 Loss of sensation
🔹Changes in bladder function
🔹 Increased spasms
🔹 Dizziness or low blood pressure
🔹 Progressive neurological decline

Early symptoms may include loss of temperature or pin-prick sensation, making regular monitoring especially important. Even after treatment, ongoing follow-up care is essential.

💙 Because symptoms and progression vary greatly from person to person, awareness, early detection, and specialized rehabilitation care can make a meaningful difference.

🔍More about Syringomyelia:
https://tinyurl.com/syringomyelia

🧑‍⚕️Get answers to your questions by Syringomyelia experts:
https://tinyurl.com/ASAPConference2026

05/21/2026

💙🩵 Syringomyelia is a rare neurological disorder, estimated to effect roughly 8-9 people per 100,000, or roughly 1 in 18,000 Americans.

SM occurs when a fluid-filled cavity (syrinx) forms within the spinal cord and can expand over time, potentially damaging nerves and disrupting normal spinal cord function.

Many patients spend years searching for answers before receiving a diagnosis, especially because symptoms can vary widely from person to person.

This May awareness month matters because early diagnosis may help patients access treatment sooner and reduce the risk of long-term neurological damage. Help us spread awareness. 💙

https://tinyurl.com/syringomyelia

05/19/2026

💙 What is a syrinx shunt?

When a syrinx (fluid-filled cavity in the spinal cord) continues to grow or cause symptoms, surgeons may consider a procedure called a syrinx shunt to help drain the fluid.

There are several types of shunts, including:
🔹 Syringo-subarachnoid shunt
🔹 Syringo-pleural shunt
🔹 Syringo-peritoneal shunt

The type of shunt used depends on the patient’s condition and the surgeon’s approach.

Syringomyelia is often caused by another condition such as:
• Chiari malformation
• Tethered cord
• Spinal cord injury

Surgeons usually treat the underlying cause first, reserving shunting for complex or persistent cases when other treatments have not successfully reduced the syrinx.

Like all spinal cord surgeries, shunts carry risks and may sometimes fail over time due to scarring or blockage. Ongoing monitoring is important to assess the need for future revisions.

Understanding treatment options can help patients and families feel more informed and empowered. 💙
https://asap.org/disorders/articles/syrinx-shunts/

🔜 Learn more about treatment for syringomyelia at ASAP's free virtual conference: https://tinyurl.com/ASAPConference2026

05/17/2026

🦓 The connective tissue connection between EDS + Chiari malformation + syringomyelia🧬

Visit our YouTube channel to learn more from top neurosurgeons and immunologists who discuss how these conditions may be related and what patients should know.

🔎 Search for the videos below or any other topic of interest.

🔹Connective Tissue Disorders and Ehlers-Danlos Syndrome (EDS) & Chiari – Vincent Martin, MD
🔹Pain and EDS - Ilene Ruhoy, MD
🔹Neuropsychiatric Manifestations of Mast Cell - Anne Maitland, MD
🔹The Pentad Patient - Ilene S Ruhoy, MD
🔹Connective Tissue Hypermobility: EDS & Chiari 1 Malformation in the Pediatric Patient - Robert Keating, MD
🔹Identification of Rare Variants in Collagen Genes in Chiari Patients - Allison Ashley Koch, MD

🦓 Share to support

🔜 More expert presentations on connective tissues disorders are coming soon from ASAP's 2026 virtual conference: https://tinyurl.com/ASAPConference2026

Address

PO Box 1586
Longview, TX
75606

Telephone

+19032367079

Website

https://tinyurl.com/ASAPConference2026

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