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
February 11, 2017 from 1:00-3:00 pm
(subject to change)
Albuquerque Quarterly 3C's Cavernoma Support Group meeting
Come meet with others who share your experiences with CCM.
Fundraising - exploring ways for success that will bring positive change
Encouragement - how to receive and help others with understanding and dignity
Location: (see map below)
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. 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.
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.