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Lee. Vessel Plus 2022;6:7  https://dx.doi.org/10.20517/2574-1209.2021.31         Page 3 of 5

               devastating disease made it difficult to expand our base.


               Around the same time, Angioma Alliance member and amateur genealogist Joyce Gonzales, working with
               professional genealogist Henrietta Christmas, identified Cristóbal Baca and Ana Morena de Lara as a
               founding family of the Common Hispanic Mutation in New Mexico. Angioma Alliance came to understand
               that Hispanic New Mexicans, whose ancestors lived along the Camino Real de Tierra Adentro before the
               landing at Jamestown, were intensely interested in family history and genealogy. It was also clear that the
               state lacked medical resources; most of the state is rural, and it ranks 49th in the percent of the population
               living under the poverty line. A three-pronged approach was necessary for addressing these issues and
               developing a novel, culturally congruent program.


               THE BACA FAMILY HISTORICAL PROJECT
               Angioma Alliance christened the Baca Family Historical Project (BFHP), an initiative led by a community
               engagement specialist and a genealogist. The initiative’s name was chosen to reflect a shift from a medical
               model toward a culturally relevant model. BFHP hosted family conferences for the public in historical and
               community venues. These workshops included presentations on New Mexico and Baca family history, Baca
               genealogy, the connection of the CCM1 Common Hispanic Mutation to the Baca family, and, finally,
               information about symptoms, diagnosis and ongoing care for the illness. After the presentations, attendees
               could participate in family tree workshops during which they received assistance from genealogists in
               attendance in finding their Baca family connections. If individuals were deemed to be in a high-risk family
               line, they were offered onsite Oragene swab genetic testing, with results sent to the doctor designated by the
               individual. Those who received positive results had follow-up calls with Angioma Alliance. The
               organization connected them with the Angioma Alliance-recognized CCM Center of Excellence at the
               University of New Mexico for care and potential research participation. Over the course of three years,
               BFHP hosted 87 public conferences with a total of 8734 attendees. The annual CCM patient caseload at
               UNM rose from 30 patients per year to over 300 patients per year.

               Because the backbone of New Mexico’s health system is the lay Community Health Worker (CHW), or
               promotora, BFHP partnered with the New Mexico Department of Health to train 1060 CHWs. Once they
               became familiar with the illness and its connection to the Baca family line, they could refer their at-risk
               community members to BFHP for genealogical research and genetic testing and to UNM for care. CHWs
               were also able to reach families on tribal lands where the Common Hispanic Mutation had been introduced
               centuries earlier through the cultural trauma of kidnapping and rape at the hands of Spanish settlers. These
               are very sensitive conversations that only tribal community members could initiate.


               BFHP engaged in a large-scale public awareness campaign soliciting coverage in newspapers and on radio
               and television. This work became paramount during the final, pandemic year of the initiative when no live
               trainings or workshops could be held. Over the course of four years, CCM education was on the airwaves
               around the state, including 90-min feature segments broadcast on key public and talk radio stations,
               reaching hundreds of thousands of readers, listeners, and viewers. It is now rare to find Hispanic individuals
               in New Mexico who have not heard of the historic Baca family and their connection to the Common
               Hispanic Mutation. Over the course of the four years, BFHP family tree workshops led to the discovery of
               an earlier Spanish Mexican couple, Juan Bartolome Dominguez (1596-1656) and Elena de Mendoza, whose
               descendants married into the Baca family and are likely the source of the Common Hispanic Mutation in
               the state of Chihuahua, Mexico.
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