Legislation and Outreach Project Introduced to Support New Mexico Population at High Risk for Rare Genetic Disease whose Origins are Traced Back to Early Settlers

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Angioma Alliance, a 501c organization dedicated to raising awareness of cerebral cavernous malformations (CCM), announces the introduction of the CCM-CARE Act and the New Mexico Engagement Project, funded by the Julian Grace Foundation and Global Genes.

Angioma Alliance, a 501c organization dedicated to raising awareness of cerebral cavernous malformations (CCM), announces the introduction of the CCM-CARE Act and the New Mexico Engagement Project, funded by the Julian Grace Foundation and Global Genes. The CCM-CARE Act would allow development of at least three Centers of Excellence specializing in CCM, with one in New Mexico and others around the country, and would also allow the CDC, FDA and NIH to further study CCM to advance research for a treatment and cure.

New Mexico is the state with the largest population of families affected by the genetic form of CCM in the world. CCM is a brain blood vessel illness that causes hemorrhage, at any age, sometimes with devastating effects, such as stroke, seizure, neurological deficits, and even death.

One hereditary form of the illness is particularly prevalent among the Hispanic population of New Mexico. The defective gene has been passed down through at least 14 generations, and the origin can be traced back to the earliest Spanish settlers in the late 1500s. In the northern half of New Mexico, 1 person in every 50 may be affected, compared to a national average of 1 in 600. Most are undiagnosed, and the number of affected individuals is growing.

The staggering incidence in New Mexico and lack of comprehensive care for those affected by CCM in New Mexico and throughout the nation has led Senator Tom Udall and the New Mexico Congressional delegation to introduce federal legislation. Connie Lee, Angioma Alliance CEO says, "We are grateful to Senator Udall for his advocacy on behalf of our New Mexico families and those around the country. His legislation, coupled with our exciting new community engagement effort, will raise awareness and potentially have a dramatic impact on the New Mexico CCM community."

Complementary to the legislation, the Angioma Alliance New Mexico Engagement Project, funded by the Julian Grace Foundation and Global Genes, will launch its efforts to help the under-served Hispanic population at risk for CCM. Joyce Gonzales of Santa Fe, who is a Genealogist and carries the genetic mutation herself will use genealogical research to identify the descendants of Cristóbal Baca, currently believed to be the founder of the genetic mutation. Nora Chavez, of Albuquerque, will lead community outreach efforts in high-risk communities throughout New Mexico via Facebook, in-person events, community gatherings, and by interfacing with community leaders like clergy, non-profit administrators, and city officials in target cities.

To support these efforts, the UNM Domenici Center for Health Science Education in Albuquerque will host a family conference to kick off outreach efforts on Saturday, April 8th, 2017 from 8:00 AM – 4:30 PM. Events such as these will result in the increased likelihood of proper diagnosis, medical treatment and clinical trial participation. At its core, connecting with and educating affected families will allow them to make informed decisions about their medical care and let them know they can live a full life even after they are diagnosed.

Jenae was an otherwise healthy nine years old girl when she died of an undiagnosed brain hemorrhage in a Santa Fe hospital. Tim, Jenae’s father, reported that had she been diagnosed earlier, her hemorrhaging cavernous angioma might have been detected before it became fatal. This tragic story indicates the importance of the outreach project and legislation.

About Angioma Alliance
Angioma Alliance is a national 501c3 nonprofit patient advocacy and research organization whose mission is to inform, support and empower individuals affected by cavernous angioma and drive research for better treatments and a cure.

For more information about cavernous angiomas, visit http://www.angioma.org.

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Stephanie Alband

Stephanie Alband
@AngiomaAlliance
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