The 3C's Cavernoma Support Group
is a group of people sharing their experiences in life with
Cerebral Cavernous Malformations (CCM).
is a place of care, encouragement, information and hope. A place
where you can share and learn of new resources. This information
can guide individuals on how to make smart treatment decisions,
prolonging quality of life.
This is also the place where we explore the unknown mysteries of
CCM by annually raising money for grants to provide research that
will help lead to medical advances and possibly a cure.
Those or families with CCM are welcomed to our support group
meetings. There you will find people JUST LIKE YOU, who struggle
and fret with this unwanted illness. You will see that you are not
alone! This is a place where new friendships are rooted and
blossom. We walk along side and encourage each other in all of the
complex issues of CCM and in living life to it's fullest.
We dedicate this support group to the loving memory of Jenae
Gallegos and those who struggle with this illness. At nine years of age, Jenae unknowingly had CCM. She
lived life to it's fullest until she encountered a devastating
hemorrhage that ended her short life.We want those who battle with CCM to make knowledgeable
decisions and to have pleasant and supportive company in their
journey with this illness.
cavernous Malformations (CCM) are blood vessel malformations that
occur sporadically or are inherited in families. CCM can form in
many types of body tissue, but in CCM they can be found in the
brain, spinal cord, skin or retina. According to the most recent
findings, up to 1 in 200 people have the disorder. Many may
unknowingly carry this illness or may be misdiagnosed. There are 3
known types of hereditary CCM: CCM1, CCM2, and CCM3. A fourth type of CCM
is known as the sportatic form that can not be traced back to the parents.
is the most common, and a specific mutation of CCM1 is known as
the common Hispanic mutation (CHM). This form is inherited
directly from a parent. Offspring have a 50% percent chance of
inheriting the KRIT1 gene mutation. The CCM1-CHM is found in
families with ancestry from Spaniards that colonized the
southwestern US centuries ago. It is not uncommon for those having
CCM1 to have tens to hundreds of lesions in a single individual
is caused by a mutation in the malcavernin gene. This form can
also be inherited.
is caused by mutations in the PDCD10 gene. This form can
also be inherited.
In New Mexico, this genetic mutation has
been traced back 17 generations to the original Spanish settlers of the
It is estimated that in New Mexico that
there are more than 40,000 undiagnosed with CCM.
It is believed that the CCM gene found
in New Mexico descend from the same grandparent. Because this is a
dominant gene, we have had the opportunity to identify the probable
founding grandparent born in the 1600’s. We have learned a lot about
this family and have a good idea on how this illness spread.
The following link shows the genealogy
and time consuming research done by Joyce Gonzales: Genealogy Chart
The southwest probably has the highest
population density of this illness in the world. This includes the State
of New Mexico, Arizona, California, Colorado and Texas.
Those whose ancestors populated the area
from Spain are most at risk.
following list contains research links with helpful information
you wish to share new or any other CCM research, please email: Tim Gallegos with your
Epilepsy Support Education Services, Inc.
2202 Menaul NE Suite A
Albuquerque, NM 87107
If you are a New Mexico resident, you may be interested in meeting many here locally who attend the local Support Group meetings. You can do this by joining the 3C's CCM New Mexico Facebook group. Lots of CCM information is shared there, along with day to day family experiences, and one's battle with the illness.
If you live in New Mexico and would like to join, please email: Tim Gallegos to be invited to this invitational only group. Part of this group's purpose is to get to know others here locally who deal with CCM.
There are plans to start up support groups in other cities in New Mexico as interest develops. Joining this group helps to let us know other locations where a face to face support group would be beneficial.
Spreading awareness will help to
save lives and collectively find a cure.
very high percentage of those with CCM are not aware that they have
it. Those who seek medical treatment are likely to be misdiagnosed
for other aliments, especially those common in the brain.
time you have an appointment, please talk to your doctor about CCM.
Ask them specifically if they know what CCM or Cerebral Cavernous
following Awareness Pamphlet, nicknamed the 'pursuader' can be
printed and given to others to educate medical personnel and/or help
others to be proactive with CCM to avoid deficits or death.