My name is Joyce Gonzales and I live in Santa Fe, NM. I am currently employed by the National Angioma Alliance (501c) as a staff Genealogist.
NM currently has the highest concentration in the world of an illness called Cerebral Cavernous Malformations (CCM). This illness which causes malformations in the brain and/or spinal cord and affects Hispanics with a 400 year history in NM. Because the illness is usually misdiagnosed or undiagnosed, very few people including the Medical community know much about it.
Because this illness is carried on a dominant gene and does not skip generations, through many years of genealogy research have discovered the founding couple of this illness born in the early 1600s in NM.
One of our biggest complications research through UNMH and education of the general Community and the Medical Community, is that everything, including grants, are dependent on good statistics of how many people today have the illness in NM. There are several variable to be considered in finding this information. We know the exact # of people who had this illness in the first 4 generations (there are a total of 17 generations. We have significant information on many people today with the illness, but the middle generations is a little more difficult.
We need correct procedures and calculations to come up with good estimations. This would also be a research study that would help save lives. One simple example of this is that a person with CCM should not take blood thinners such as aspirin. My mother died from a CCM bleed in the brain because she did not know she had this illness and was taking aspirin because of her arthritis.
We know there are a lot of people in NM today affected with CCM, but I don't know how to figure it out starting from the founding grandparent because of the variables that need to be considered.
Anything you could do to help us or any advice as to where else to go would be greatly appreciated. Thank you very much for your consideration.
National Angioma Allicane "because brains shouldn't bleed"