Congressional Delegation Seeks to Help New Mexicans with Genetic Brain Disorder

WASHINGTON, D.C. – The New Mexico Congressional Delegation has introduced legislation to expand needed research, treatment and education efforts related to Cerebral Cavernous Malformation (CCM), a relatively unknown disorder of the brain and spinal cord more common among New Mexico Hispanics than any other group.
The Cavernous Angioma Research and Treatment Act would build upon an existing network of clinical and research labs to increase coordination, information sharing and awareness about the disease for both professional and patient education. It would also support the development of telehealth infrastructure to reach rural, underserved communities. Cavernous Angioma affects more than 1.5 million Americans, the largest proportion of whom reside in New Mexico.
“Very little is known about this genetic disease that disproportionately affects Hispanic New Mexicans, but can result in seizure, stroke and death,” U.S. Sen. Tom Udall said. “By boosting collaboration, research and awareness, we can prevent the dangerous brain bleeds caused by CCM. Furthermore, we must continue to build upon the efforts of Cavernous Angioma centers like UNM’s that are doing valuable research and provide important resources for patients, providers and caregivers and explore ways to incorporate telehealth technology to expand its reach across the state and nation.”
“Cavernous Angioma affects New Mexico Hispanics at a dramatically higher rate than other populations,” U.S. Sen. Martin Heinrich said. “Investing in clinical and research centers across the country to track and treat individuals afflicted by this illness is an important step in developing a cure. I’m glad to join Senator Udall in this effort to expand research and raise awareness about CCM.”
“I am proud to join with my colleagues from New Mexico to help those struggling with cavernous angioma,” U.S. Rep. Steve Pearce said. “This bill brings much-needed attention to this rare disease, while also taking vital first steps in finding new treatments and approaches to assist individuals in New Mexico and across the United States living with this debilitating disease.”
“Raising awareness for this debilitating disease that impacts more than a million people across the country, yet has received little attention, is a critical step in this fight,” U.S. Rep. Ben Ray Luján said. “With a significant number of New Mexicans afflicted with CCM, more research is needed in order to find a cure and provide greater hope for those battling this disease.”
“I’m proud that our state’s congressional delegation is working together to improve the lives of the many New Mexicans affected by Cerebral Cavernous Malformation, a disease that is especially prevalent among our state’s Hispanic population,” U.S. Rep. Michelle Lujan Grisham said. “Through expanded research, treatment and awareness, we can learn more about CCM and find ways to help those living with this rare but potentially life-threatening disease. And by further developing telehealth infrastructure in rural and underserved communities, this legislation will greatly improve health care access throughout New Mexico at little cost.”
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 2009. Since then, he has reintroduced legislation with the New Mexico delegation.
The bill is supported by the University of New Mexico, the Angioma Alliance Scientific Advisory Board and CCM3 Action.
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