About Us

The 3C's Cavernoma Support Group is a group of people sharing their experiences in life with Cerebral Cavernous Malformations (CCM).

It 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?

Cerebral 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.

CCM 1

CCM1 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 patient.

CCM 2

CCM2 is caused by a mutation in the malcavernin gene. This form can also be inherited.

CCM 3

CCM3 is caused by mutations in the PDCD10 gene. This form can also be inherited.


Click here for more information: Cavernous Angioma (CCM) Information.

Genealogy


In New Mexico, this genetic mutation has been traced back 17 generations to the original Spanish settlers of the 1580s.

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.

Research

The following list contains research links with helpful information about CCM.

If you wish to share new or any other CCM research, please email: Tim Gallegos with your suggestions.
Publisher
Resource / Link
Pen Medicine Penn Study Describes the Molecular Cause of CCM
Angioma Alliance Research Projects
U.S. National Institutes of Health (UNM-Neurology) Clinical Trials
Brain Vascular Malformations Consortium Brain Vascular Malformations
GeneReviews Familial Cerebral Cavernous Malformation
Santa Fe New Mexican CCM Legislation
Genetics Home Reference Cerebral Cavernous Malformation
Stroke and Neurovascular Center of Central California Cavernous Malformation (Cavernoma)

Events

July 30, 2016 at 1:00 pm (subject to change)

Quarterly 3C's Cavernoma Support Group meeting

Come meet others who live with CCM.
Presentations:
  • TBA
Location: (see map below)
Epilepsy Support Education Services, Inc.
2202 Menaul NE Suite A
Albuquerque, NM 87107
Note:
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.

awareness

Spreading awareness will help to save lives and collectively find a cure.

A 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.
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 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.


Pamphlet Open Flow


Full Reproducible Pages


These images are not to be sold or altered