Delegation's CCM Bill Garners Wide Support
Bill Seeks to Help Improve Care for Hispanics with Rare Genetic Disease
WASHINGTON - Community-wide support continues to build following the introduction of legislation to increase education and research efforts for a rare genetic disease affecting Hispanics. Cerebral Cavernous Malformation (CCM) affects approximately 1.5 million Americans, the majority of whom reside in New Mexico.
Yesterday, the New Mexico Congressional Delegation introduced legislation that would authorize a Cavernous Angioma Clinical Care, Awareness, Research and Education (CARE) Center of Excellence in the Southwest to increase research and awareness about the disease forboth professional and patient education.
The legislation was crafted incollaboration with patients and CCM research advocates. It has support from the University of New Mexico Health Sciences Center community, the Angioma Alliance Scientific Advisory Board and CCM patients.
Director of the University of New Mexico CCM Project, Dr. Leslie Morrison, MD highlights the need for improved care:
"In New Mexico, we owe it to our Cavernous Angioma families to provide the best education to current and future medical providers, and to provide the best possible treatment for this disease. We are losing patients to this disease and patients are losing function to this disease. The time to make this change is now so that we can all hope for a brighter future," said Morrison.
Chair of the Angioma Alliance Board of Directors, Sara Sukalich, MD notes the need for a national CCM research center:
"The national Angioma Alliancepatient community is proud to support this initiative. We believe theimpact of the CARE center will reach beyond New Mexico to serve as a model for other institutions across the country. As research continues to progress and we move closer to the first clinical treatment trials, coordination between research institutions and CARE Centers will be an essential component to success for treating this illness," said Sukalich.
Mr. Gallegos, the father of two children with CCM expresses the need for more research on the disease. Mr. Gallegos' daughter died at nine-years-old due to CCM and now his young son is suffering from the disease:
"In the big scheme of things; little time, research and money has been spent on the research of Cavernous Angioma. Because of this, the medical community is not able to provide a proper prognosis, or provide any proactive treatment thatwill actually prevent bleeds, trauma and death. Finding a doctor knowledgeable about Cavernous Angioma has been very rare," Mr. Gallegos said. "We need answers to the many unanswered questions that have been continually asked. With the proper resources we hope that someday the majority of the medical community will be able to lead and provide what has long been awaited."
Ms. Romero wasn't diagnosed with CCM until age 27 when she had her first brain surgery:
"I have had brain bleeds all my life no one knows why the bleeds occur or the damage they may be causing. I am the mother of two boys and I am thankful I did not pass on this genetic disease to them, but I also would not want anyone else to suffer the pain and anguish I and others with this disease have had to endure," Ms. Romero said.
Cerebral Cavernous Malformation is caused by abnormal blood vessels that form clusters, known as angiomas, in the brain or spinalcord. 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.
U.S. Senator Tom 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.