February 09, 2012

N.M. Congressional Delegation Seeks to Help Hispanics with Rare Genetic Disease

Legislation Would Raise Awareness, Improve Care for Patients with CCM

WASHINGTON - Today, U.S. Senator Tom Udall and U.S. Representative Martin Heinrich led the New Mexico Congressional Delegation in introducing a bill to increase research and education efforts related to Cerebral Cavernous Malformation (CCM), a relatively unknown illness more common among New Mexico Hispanics than any other group.

The bill would authorize a Cavernous Angioma Clinical Care, Awareness, Research and Education (CARE) Center of Excellence to increase research and awareness about the disease for both professional and patient education. Cavernous Angioma affects approximately 1.5 million Americans, the majority of whom reside in New Mexico.

"The sad reality is that this disease is difficult to diagnose and today we have no cure. We need more research and a facility dedicated to giving patients the best care possible," Udall said. "With a high population of patients with Cavernous Angioma and an excellent care facility at UNM, New Mexico is the clear choice for a care center like this."

"Cavernous Angioma affects New Mexico Hispanics at a higher rate than other populations," said Heinrich. "Creating a Center of Excellence at a southwestern university like UNM is an important step in developing a cure for New Mexicans afflicted by this illness."

"I'm glad to support Sen. Udall's important effort to create a Center of Excellence for Cavernous Angioma research at UNM. I believe this is an important step toward improving and development treatments for this disorder," Bingaman said.

"I am pleased to work with the delegation to establish a Center for Excellence that will be dedicated to finding a treatment for those affected by Cavernous Angioma. New Mexico has the highest population density of those affected by Cavernous Angioma in the world, and I am continuing to fight for the wellbeing and health of New Mexicans to ensure that the best healthcare possible is available," Pearce said.

"Sadly, this debilitating disease impacts more than a million people across the country, with a significant number of those cases occurring here in New Mexico," Luján said. "Raising awareness is a critical first step in the effort to combat the illness - which has so far received too little attention - and provide hope that one day we will find a cure."

Cerebral Cavernous Malformation is caused by abnormal blood vessels that form clusters, known as angiomas, in the brain or spinal cord. If the angiomas bleed or press up against structures in the central nervous system, they can cause seizures, neurological deficits, headaches, or hemorrhages.

The disease was common among Spanish settlers in New Mexico in the 1580s. Since then, it has been passed down through generations. New Mexico has the highest population density of the illness in the United States, and thousands of New Mexico Hispanics may be affected. Because the disease has attracted little scientific or medical attention, however, the precise number of people affected is unknown. The disease has also struck a number of prominent athletes, including Olympic track and field superstar Florence Griffith-Joyner.

Udall has been working to raise awareness for CCM since he was a member of the House. In 2008, he introduced a resolution to draw attention to the lack of education and awareness of CCM which passed the Senate unanimously in May of 2009.

The legislation has been proposed with support from the University of New Mexico Health Sciences Center community and CCM patients. It is also supported by the Angioma Alliance Scientific Advisory Board.