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.
What is CCM?
CCMs are blood vessel malformations that can occur sporadically or through familial heredity. CCM accounts for a large proportion (8-15%) of all brain and spinal vascular malformations.
In the Southwest, the most common form of CCM is inherited from a parent having the mutated gene, named CCM1. The illness can be traced back at least sixteen generations to the first Hispanic settlers. It is estimated that 1 out 200 in the Southwest carry the illness, many are asymptomatic. The sporadic forms are found in 1 out of 500 people worldwide. The illness is not well known in the medical community. CCMs can be formed anywhere on the body, but are usually found in the brain or spinal cord. They can cause headaches, nausea, sudden changes in hearing or vision, seizures, tingling in the limbs, paralysis, can be crippling and possibly lead to death. We are working to bring awareness, advocacy, research and support.
In New Mexico, this genetic mutation has been traced back sixteen generations to the original Spanish settlers of the 1500's. It is estimated that in New Mexico that there are more than 30,000 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. We have learned a lot about this family and have a good idea on how this illness spread.
The southwest probably has the highest
population density of this illness in the world. This includes the States
of New Mexico, Arizona, California, Colorado and Texas.
following list contains research links with helpful information
you wish to share new or any other CCM research, please email: Tim Gallegos with your
Albuquerque Quarterly 3C's Cavernoma Support Group meeting
Date: May 19, 2018
Time: 6:00 to 7:30 PM
CCM News and announcements
Topics of your concern
Location: (see map below)
Epilepsy Support Education Services, Inc.
2202 Menaul NE Suite A
Albuquerque, NM 87107
Connie Lee from the Angioma Alliance will be joining us! Note the new time - 6:00 PM. This is because of a scheduling conflict with the Baca Family Project - Los Lunas Conference, earlier that day. Child care will be provided. Hope to see you there!
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. The latest information on CCM is shared there, along with day to day experiences.
Please email: Tim Gallegos to be added to this private group.
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.
Family Story Reproducible Pamphlets
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 commonly found in the brain. Next time you have an appointment, please talk to your doctor about CCM.
Ask them specifically if they know what CCM or Cerebral Cavernous Malformations are.
The following Awareness Pamphlets 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.
The Gallegos story pamphlet was nicknamed the 'pursuader', which helps to motivate some people at risk for CCM to seek medical attention and diagnosis.
It accomplishes this by showing what can happen when you can and can not be proactive with your care with CCM.
In Alphabetical Order
Arnett Family Story - in honor of Colton and Ryleigh Arnett
Gallegos Family Story - in memory of Jenae Gallegos and honor of Joel Gallegos