About Us

3C's CCM Community is a community 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.
Those impacted by CCM are welcomed and encouraged to attend meetings. You will meet people who are also dealing with this illness. Many friendships develop here.
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.   This community of people have helped each other through major decisions and daily struggles with CCM. We help to bring awareness, advocacy, research and support.

WHAT IS CCM?

CCMs are blood vessel malformations that can occur sporadically or through familial heredity. 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 to the first Hispanic settlers in the 1600’s. Many who have CCM are undiagnosed and don’t know they have the illness. The illness is not well known by many and in the medical community. CCM lesions can be formed in different places in the body, but are mostly found in the brain and spinal cord. They can cause headaches, nausea, sudden changes in hearing or vision, seizures, tingling in the limbs, paralysis, can be crippling, and are infrequently fatal. Many having CCM are asymtomatic and have no issues with the illness.


EVENTS

 

Albuquerque 3C's CCM Community meeting

Date: Friday June 21, 2019

Time: 6:00 to 8:00 PM

 

Discussions:
  • New CCM Developments
  • Diet - the importance of the microbiome with CCM
  • Hypoxia increases CCM
  • Child/teen emotional study
  • Topics of your concern

 

Please bring a snack / drink to share.

 

Location:
Epilepsy Support Education Services, Inc.
2202 Menaul NE Suite A
Albuquerque, NM 87107

 

Santa Fe 3C's CCM Community meeting

Date: Thursday July 25, 2019

Time: 6:00 to 7:30 PM

 

Discussions:
  • CCM News and developments
  • Topics of your concern

 

Location:
Santa Fe Southside Library - Small Community Room
6599 Jaguar Dr,
Santa Fe, NM 87507
Child care will be provided if requested with advanced notice.
Please request at least 3 days before; using the email below.
Thanks.

 

Note:

Want to know when our next events are by email or Facebook?

Email me with your request using the following email:

 

Please email: Tim Gallegos with any questions or requests.

GENEALOGY

In New Mexico, this genetic mutation has been traced back to the original Spanish settlers of the 1600'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, Colorado, Arizona, Texas, and California.

RESEARCH

The following list contains some helpful research links about CCM.

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)

awareness

Family Story Reproducible Pamphlets

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 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


These images are not to be sold or altered