SUBJECT: S. 2010, the CCM-CARE Act
Dear Senator Udall,
On behalf of the American Association of Neurological Surgeons (AANS) and the Congress of
Neurological Surgeons (CNS), we are pleased to support your legislation, S. 2010, the Cerebral
Cavernous Malformations Clinical Awareness, Research, and Education (CCM-CARE) Act. We also
thank Senator Martin Heinrich for joining you as an original cosponsor of the bill.
As you are aware, cerebral cavernous malformation (CCM) is a devastating, rare genetic blood vessel
disease that impacts the brain and spinal cord in over 600,000 Americans. Most people with the disease
do not realize they have it until they experience symptoms, which include neurological deficits, seizures,
stroke or sudden death. The only treatment available is brain and spinal surgery, and that can help only
certain patients.
Since there is currently no cure for CCM, your legislation would provide crucial insights into this dreaded
condition by expanding research at the National Institutes of Health (NIH), the Centers for Disease
Control and Prevention (CDC) and the U.S. Food and Drug Administration (FDA), to increase awareness,
treatment and prevention of CCM. By conducting basic and clinical research, collaborating on multi-site
clinical drug trials and coordinating all federal CCM health efforts to facilitate the exchange of information
under the Department of Health and Human Services (HHS), new and innovative treatments can
hopefully be discovered.
We thank you for your continued leadership and look forward to working with you on this important
legislation.
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