WASHINGTON - U.S. Senator Tom Udall was joined today by Senator Jeff Bingaman in introducing legislation that would establish a Center of Excellence at the University of New Mexico to coordinate the treatment and research of Cavernous Angioma, a vascular disorder of the central nervous system that disproportionally impacts New Mexicans.
The bill would create the Cavernous Angioma Clinical Care, Advocacy, Research and Education (CARE) Center through the National Institutes of Health to increase research, awareness and education about cerebral cavernous malformations.
"New Mexicans of Spanish heritage are disproportionally impacted by this relatively unknown disease, which currently has no cure. This new center will give hope to those affected by Cavernous Angioma by consolidating resources and facilitating collaboration among researchers and doctors," Udall said. "The need for this Center of Excellence is clear - and the University of New Mexico is the obvious choice for a research facility of this caliber."
"Creating a Center of Excellence for Cavernous Angioma research at UNM would allow us to gain a greater understanding of this disease - with an eye towards improving and developing treatments for the disorder," Bingaman said. "I'm glad to join Senator Udall in this important effort."
Cavernous Angioma is believed to be genetically tied to those who migrated from Spain in the 16th century across the southwest United States. Lesions associated with the disease are highly susceptible to hemorrhaging into surrounding brain tissue and can cause serious and potentially fatal consequences, including seizure, stroke and death in patients of all ages, including children.
Cavernous Angioma affects approximately 1.5 million Americans, the majority of whom reside in New Mexico. Because the U.S. currently faces a shortage of physicians familiar with the illness, affected individuals have difficulty receiving timely diagnosis and appropriate care.
"CCM is an illness that has affected people in New Mexico and the Southwest for the past 300 years. Many families, including mine, have been affected in sometimes very devastating ways, such as the loss of a child," said Joyce Gonzales, who lost her mother and a nine-year-old cousin to CCM and now serves as New Mexico's Angioma Alliance Coordinator. "The Center for Excellence would be a giant step forward to finally giving these families a resource they desperately need to understand and deal with their illness."
The legislation also is supported by the national Angioma Alliance, a patient organization for those who have Cavernous Angiomas.
"The establishment of the Center of Excellence is an important step toward improving the lives of those with Cavernous Angiomas in New Mexico. It will provide the focused, comprehensive care that is required for this illness, and will help us move toward better treatments in the future. This is good news not just for those affected in New Mexico but for everyone in the country who has a Cavernous Angioma," said Dr. Connie Lee, founder and president of Angioma Alliance.
Several UNM faculty members are already nationally recognized for their ongoing contributions to quality care and collaborative research related to CCM. And because of UNM's experience with New Mexico's relative high population density of patients with this diagnosis, the care provided at a UNM Center of Excellence would be community-, family- and patient-centered and culturally sensitive.
"I want to thank Senator Udall for his initiative to fund the development of the Cerebral Cavernous Malformations Center of Excellence here at the UNM Health Sciences Center. This will greatly enhance our ability to train our physicians and medical professional to treat this deadly disease. So many of our families in New Mexico are direct descendants of Spanish settlers from the 16th century. We have a special responsibility to our people and Senator Udall's bill will greatly aid in our ongoing efforts to address this condition," said Dr. Paul Roth, Executive Vice President for Health Sciences University of New Mexico and Dean of the UNM School of Medicine.
