#United States #Seattle #Seattle Children's #Cavernous Malformation #CCM Center

Seattle Children's Achieves Cavernous Malformation Center of Excellence Designation

In a significant achievement for pediatric healthcare, Seattle Children's Hospital has been officially recognized as a Cavernous Malformation Center of Excellence. This distinction marks it as the first pediatric hospital in the western United States to receive this designation, reflecting its commitment to excellence in clinical care, research, and education regarding cavernous malformations (CCM).

What Are Cavernous Malformations?

Cavernous malformations are rare vascular abnormalities that can lead to severe health complications, including strokes, seizures, and neurological disorders. An estimated 140,000 individuals in the U.S., including children and adults, are affected by this complex condition. The only treatment currently available for CCM is surgical intervention, emphasizing the need for expert medical care in its management.

Recognizing Expertise

Connie Lee, CEO of the Alliance to Cure Cavernous Malformation, expressed her excitement over Seattle Children's achievement, highlighting the hospital's leadership in providing specialized care and conducting pivotal research on these conditions. 'We welcome Seattle Children’s to our growing network of designated CCM Clinical Centers and Centers of Excellence offering knowledgeable, multi-disciplinary care to CCM patients in the U.S.,' said Lee.

The team leading Seattle Children's CCM Center of Excellence includes Dr. Catherine Amlie-Lefond, who directs the center and also serves as the Pediatric Vascular Neurology Program Director. Dr. Amlie-Lefond expressed pride in the hospital's recognition and its ongoing commitment to developing collaborative care approaches in partnership with Harborview Medical Center.

Multi-Disciplinary Team Focus

The dedicated team at the CCM Center includes pediatric neurosurgeon Dr. Hannah Goldstein and neurovascular genetic counselor Zoe Nelson, MS, CGC. This collaboration ensures a comprehensive approach to patient care, utilizing expertise from various fields such as epileptology, neuroradiology, hematology, and dermatology. Their ongoing research aims to better delineate familial CCM, seeking to unlock potential therapeutic pathways and improve patient outcomes.

The establishment of the Cavernous Malformation Centers of Excellence within a national network seeks to enhance diagnosis and treatment options for patients with CCM. This initiative was orchestrated by the Alliance to Cure Cavernous Malformation. To attain the esteemed designation, hospitals undergo a rigorous review process by the Alliance's Medical Advisory Board. A complete list of designated CCM Centers can be accessed through their website.

Towards a Cure

The mission of the Alliance to Cure Cavernous Malformation is focused on driving research and ultimately finding a cure for CCM, aiming to improve the lives of everyone affected. Seattle Children's, with its distinguished level of expertise, is poised to contribute significantly to this vital cause.

For those interested in learning more about cavernous malformations or the dedicated work being done to advance care and research, the Alliance's resources are available at alliancetocure.org. By reinforcing specialized care and innovative research, Seattle Children's is set to play a critical role in the future of treatments available for cavernous malformations.