3Cs CCM Community

Mark your calendars.
Great opportunity to raise awareness and funds for a cure.
😊

Hi Everyone, (from Joyce Gonzales and Christina Campos)
I am sorry for such late notice, but this is the way the Legislature works in NM.
To make a long story short, we have a really good possibility of getting Junior Monies this year to bring in a full-time employee to work with Dr. Torbey. This trained person’s focus will be to advocate for people with CCM1 and offer free testing, included in this money, for those at higher risk of inheriting CCM1. We are asking for $250,000 to accomplish this. If we are so fortunate to receive $300,000, we will then have enough money to also include a 1/2 person to continue training for the General Public (below is the job description for the full-time person.
This effort is being spearheaded by Representative Miguel Garcia, who hopes by next year to add these positions as reoccurring under the Health Department, which is currently in supporting this idea.
Representative Garcia has told us that he will dedicate $50,000 of his Junior Monies to this initiative. However, it will be up to Christina Campos and myself to get the remainder of the money from other Senators and Representatives.
I have to Thank Christina, as she had been a huge part of getting us to where we are today!
Several Senators and representatives have verbally committed Junior Monies to this cause. Keep in mind that verbal commitments are only good if they fill out their forms which are due tomorrow.
This is where you all come in. We need you to call these Legislators and thank them for their commitment and tell them why this is important to you and your families and others possibly affected in NM. Realistically, you will probably only speak to their staff, but they pass this information on to the Legislator. Again, these calls will have to be made ASAP, and no later than tomorrow. These Legislators have a lot on their minds, and we don’t want them to forget to till out their forms for CCM1. By the way please refer to House Bill 37 when you call in.
To date, these are the Senators and Representatives we have been communicating with. Please reach out to your own legislators and reference House Bill 37.
Senators:
Liz Stefanics $75,000
Nancy Rodriguez $75,000
Jerry Ortiz Y Pino $75,000 - Verbal Committment
Pete Campos: $100,000 - Verbal Commitment
Representatives:
Miguel Garcia - $50,000 - Verbal Commitment
Zamora - $50,000 - Verbal Commitment
Christine Trujillo - $50,000
Even though we have not yet received verbal commitments from several of those above, they have all helped in different ways and are very interested in CCM1. I believe that with encouragement from each of you, they probably will come through for us.
I am sorry that I am not including phone numbers at this time, but I thought it was more important to get information out ASAP. If you google each of these Legislator's names, their Legislative office phone numbers will come up easily on their websites. If I have a chance today, I will send out a list of phone numbers.
Thank you, everyone, for all you do for everyone now affected with CCM1 and for those who will find out in the future that they and/or their family members are affected!
Joyce

Movie Premier about CCM in Albuquerque on Saturday
It will be shown at the Special Collections Library, Botts Hall, ABQ New Mexico, on October 22nd, at 2:00pm. Here is a link with all the information and registration. https://angioma.networkforgood.com/events/48559-eloquent-premiere-new-mexico

Guests include: Dr. Leslie Morrison, Henrietta Martinez Christmas, Joyce Gonzales, Christina Campos, and Dawn Aldridge from UNM.

Eloquent - Premiere New Mexico Through a devastating diagnosis and heartbreak, these families found hope.

BBHI BrainNews featuring 3C's CCM Community - Summer 2022 June is Cavernous Malformation Awareness Month! Featured in this edition are resources local resources to support CCM patients & families. Read an interview with Dr. Samuel McKenzie on his research in epilepsy and more!

Twenty Years and a New Name – Connie Lee May 15, 2022, marks the 20th Anniversary of our organization. CEO Connie Lee shares a few remarks and explains our new name.

Save the date:

Join us for what will certainly be a fascinating webinar update on neurosurgical advances with Dr. Lawton on April 21, 2022 at 4:30 pm Pacific Time (Registration Required)

Welcome! You are invited to join a webinar: Dr. Lawton: Surgical Advances. After registering, you will receive a confirmation email about joining the webinar. Join us for what will certainly be a fascinating webinar update on neurosurgical advances with Dr. Lawton on April 21, 2022 at 4:30 pm Pacific Time, 7:30 pm Eastern Time. Our weekly support group will be Dr. Michael Lawton, is the President and CEO of Barrow Neurological Institute and the Chair of t...

SPECIAL EVENT - ACCELERATING CURES:
We are at the door step of finding a first treatment that could lead to a cure. This won't happen unless the work gets done.

With that said we need to get as many as possible to roll up their sleeves and be a part of the accelerating cures campaign on August 29th. This event will broadcast important information and give an opportunity to contribute.

We are currently looking for sponsors for the event that would range from $1000 - $25000. There are many benefits, advertising is one of them! If you know an organization or even a person that might be able to partner with us, please talk to them.

Below are the links for more info and to sign up for the sponsorship.
Together we can make a difference!

https://www.angioma.org/ways-to-give/celebrate-together-for-a-cure-2021/celebrate-together-for-a-cure-sponsorship/
https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ei6h7bfx05fa82bd&oseq=&c=&ch=

Celebrate Together for a Cure Sponsorship Please use this form to accept the opportunity to sponsor the Angioma Alliance Celebrate Together for a Cure event. We appreciate you!

Good news!

https://www.businesswire.com/news/home/20210621005584/en/BioAxone-BioSciences-Announces-License-of-Cerebral-Cavernous-Malformations-Drug-Candidate-BA-1049-and-Portfolio-of-Rho-Kinase-Inhibitors-to-Neurelis

BioAxone BioSciences Announces License of Cerebral Cavernous Malformations Drug Candidate BA-1049 and Portfolio of Rho Kinase Inhibitors to Neurelis BioAxone BioSciences today announced the license of BA-1049, its innovative orally-available ROCK2 inhibitor targeting CCMs, to Neurelis, Inc.

Dr. Issam Awad Discusses Rapamycin, Atorvastatin, Biomarkers, COVID, and more (Pt. 2)

On Wednesday, June 16th at 7 pm ET, 4 pm PT, in a wide-ranging presentation, Dr. Awad picks up where Dr. Kahn and Dr. Marchuk leave off. He will share insights on the use of rapamycin as a treatment for CCM, news about the atorvastatin trial and biomarker development, and additional information about CCM and COVID. There will be time for questions and answers.
Registration: https://us02web.zoom.us/webinar/register/WN_dQzjY8JWSwmwZboJ9_-NfQ

Welcome! You are invited to join a webinar: Rapamycin, Atorvastatin, and More Research - Dr. Issam Awad. After registering, you will receive a confirmation email about joining the webinar. Please join Dr. Issam Awad for this research and clinical trial update. He will be discussing rapamycin as a treatment for CCM, news from the atorvastatin trial and biomarker development, and COVID and CCM findings.

Dr. Mark Kahn and Dr. Douglas Marchuk Discuss PIK3CA Research (Pt. 1)

New research shows us that, for CCM lesions that are actively growing and causing symptoms, the endothelial cells also have acquired mutations in a common cancer-causing gene called PIK3CA. This discovery adds to the body of knowledge related to CCM biology and identifies a new target for treatment and a possible class of medicine.

On Tuesday, June 8th at 1 pm ET, 10 am PT, Dr. Kahn and Dr. Marchuk will discuss their newly published research and findings:
https://www.angioma.org/new-cancer-connections-biology-of-ccm-lesion-growth/

Registration Link: https://us02web.zoom.us/webinar/register/WN_YvlIRtQXTBqYqXspjMJ08Q

Welcome! You are invited to join a webinar: Dr. Mark Kahn and Dr. Douglas Marchuk Discuss PIK3CA Research (Pt. 1). After registering, you will receive a confirmation email about joining the webinar. CCM lesions develop when blood vessel cells (endothelial cells) lose the function for one of the CCM genes. New research shows us that, for those lesions that are actively growing and causing symptoms, the endothelial cells also have acquired mutations in a common cancer-causing gene called PIK3CA.....

Research Participation Opportunity: Blood Biomarkers

Texas Tech University Health Sciences Center El Paso has begun a project to identify the genetic factors that cause cerebral cavernous malformations (CCMs) and validate new potential blood biomarkers for early detection. They are seeking to recruit Hispanic CCM patients to donate a blood sample and clinical data. Blood biomarkers will allow us to predict whether a patient is at risk for hemorrhage in the near future, making it easier to decide who is most in need of treatments.

Cerebral Cavernous Malformations Survey TTUHSC El Paso is located in the second largest binational metropolitan area on the U.S.-Mexico border. It provides the opportunities and environment for direct intellectual and interpersonal exchanges among nursing, medical, and graduate research students on one campus.

A recent study on Propranolol for CCM

Beta blockers can repair malformed blood vessels in the brain Propranolol, a drug that is efficacious against infantile haemangiomas ('strawberry naevi', resembling birthmarks), can also be used to treat cerebral cavernous malformations, a condition characterized by misshapen blood vessels in the brain and elsewhere.