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CEO's Corner

Connie Lee, Psy.D., Angioma Alliance President and CEO

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Keep up with Angioma Alliance program news and other developments. This page is organized by date, with the most recent news first.

Please visit Angioma Alliance Chief Scientific Officer's Research News page for the latest in science.

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March 16, 2019

We're hiring! With the departure of Stephanie Alband, our Development Director, at the end of the week and the great success of our Community Alliance program, we're rethinking how we can offer the most effective support to our members' mission and fundraising efforts.

We're hoping to divide the US into 3 parts with a part-time (24/hour/week) staff member in each region to build and support Community Alliances. At this time have a need to hire a Western and an Eastern staff member to serve as Community Engagement and Fundraising Specialists.

These are work-from-home positions, with a small amount of travel, and we are hoping to attract people who are already committed to our mission. Please read about our Employment Opportunities to learn more, and please share with anyone you know who might be interested.

 

March 16, 2019

Great news this morning! New Mexico House Joint Memorial 7 passed the Senate in the wee hours of the night. It will now go to the Governor for signature.

The Memorial requests 1) more cavernous angioma research, 2) reporting of the number of cavernous angioma patients in New Mexico by primary care providers, 3) increased medical provider and public education, 4) increased genetic testing, and 5) a determination by the state's Health and Human Services department on whether genetic testing can be covered by Medicaid.

Because of a genetic founder mutation, New Mexico has more people affected by cavernous angioma than anywhere in the world.

 

March 9, 2019

The Baca Family Historical Project brought their information to El Paso today with a presentation and family tree workshop at the downtown library. Attendees included 13 members of the Perez family who came from the San Francisco Bay area, Juarez, and El Paso. Visit the Baca Family Historical Project's website to learn more about this Angioma Alliance initiative. The next public event for BFHP will be on April 14th at the Santa Fe Woman's Club.

 

March 7, 2019

The Barrow Neurological Institute has been recognized as a CCM Center of Excellence by Angioma Alliance! Their second opinion service is now free to Angioma Alliance members who use their dedicated phone number

 

February 22, 2019

The latest edition of our newsletter is out. Read about events, our patient registry, research news, and more:  Winter 2019 Newsletter

February 17, 2019

Please join us for a webinar with Dr. Issam Awad presenting progress on the atorvastatin trial that started enrolling last September. The Florida Community Alliance is hosting this event on Monday, February 25, at 7 pm ET, 4 pm PT. We'll also hear from one of Dr. Awad's current patients who will share her experience enrolling in the trial.

You'll need to pre-register at http://www.tinyurl.com/cashtrialupdate. Once you've registered, you'll be emailed a confirmation that includes a link to click at the time of the webinar's start. You'll also have the opportunity to submit questions before and during the webinar. We hope to see you!

 

February 10, 2019

New CCM legislation introduced in New Mexico

We're grateful to Representative Miguel Garcia who has introduced House Joint Memorial 7 into the New Mexico state legislature to support improved care and research for CCM. The Memorial has been assigned to the NM House Health and Human Services and our members will be testifying to support the legislation as it works its way through the process. We are also encouraging our New Mexico members to call their legislators to express their support using the following script:

My name is ________________ and I am calling to ask Representative ___________’s support for House Joint Memorial #7. This Memorial requests that the Department of Health and the University of New Mexico increase their efforts to support research on cavernous angioma. It also asks for additional medical provider education and public awareness efforts. This disease causes stroke and seizure in children and adults and, because of a genetic mutation, affects Hispanic New Mexicans more than any group in the world.

My family, along with 30,000 others in the state, are affected by cavernous angioma. In my family, [please add one or two personal sentences about who is affected and what has happened]. This memorial is a critical first step in addressing this public health issue and has little budgetary impact. I thank Representative __________ for their support.

If you live in New Mexico, you can find your legislator's phone number using just your address with the Find My Legislator search tool.

 

February 1, 2019

Happy Rare Disease Awareness Month!

This month Angioma Alliance is excited to announce the launch of our newly upgraded Cavernous Angioma Patient Registry. Our upgrades make the registry more user-friendly, but more importantly, make it more useful to the research community. If you have registered in the past, please log in and update your profile. There are new surveys and new ways for you to learn about our community. We never share your identifying information without your explicit permission. The Cavernous Angioma Patient Registry provides us a way to communicate with you about research opportunities and a way for researchers to begin answering their questions about the impact of the illness. The road to a cure is through you.

 

January 20, 2019

Are you in the US and looking for a cavernous angioma specialist? While there are many places that can offer good care, a few have been recognized by Angioma Alliance as CCM Centers of Excellence. These are centers that provide expert, coordinated, multi-disciplinary care for our patients. Current centers are located at the University of Chicago, University of New Mexico, Mayo Clinic Rochester, UCSF, University of Virginia, Boston Children's Hospital and Cincinnati Children's Hospital. We will be adding additional Centers this year - check this space for announcements.

 

January 18, 2019

I'd like to give a shout-out to Jamie, Steve, Erin, Ken, and Maggie who are featured in Jamie's Cavernoma Chronicles: The Cavernoma Crew video. These individuals are each sharing the story of their unique cavernous angioma journey in video, vlog, or blog form to help others, and Jamie's video introduces their efforts. This is how we raise awareness and support each other. Check it out to learn more.

 

January 8, 2019

The Mayo Clinic, an Angioma Alliance recognized Center of Excellence, has released a video entitled "Cracking the Code on Cavernous Malformations," featuring Kandie Nelson and her family, who are long-time Angioma Alliance members, and Dr. Kelly Flemming from our Scientific Advisory Board. We appreciate their spreading accurate information about the disease and its treatment.

 

January 7, 2019

We have new Facebook groups to meet our growing organization!  Please request to join our Cavernous Angioma Alliance India group if you live in India. In this group, affected individuals can share resources and support. We anticipate the group to be the seed for starting an official Cavernous Angioma Alliance India organization.

Please join our Angioma Alliance Brainstem Cavernous Angioma group if you or a loved one have or had a brainstem lesion. 

 

January 3, 2019

Since January 2017, Angioma Alliance has led a special outreach project in New Mexico called the Baca Family Historical Project. The mission of the project is to connect those at-risk for the Common Hispanic Mutation, a heredity cause of cavernous angioma, through genealogy for better health outcomes and to educate the medical professionals who care for our families.

The Common Hispanic Mutation is a specific mutation of the CCM1 gene that has been passed down through 14+ generations of the original Hispanic New Mexican founding families. We've hosted public conferences around the state in which we share the history of the original Hispanic settlers, facilitate family tree workshops, and offer genetic testing. We've also introduced hundreds of medical professionals to the impact of the illness in the state and shared information they need to provide better care.

We have been very successful in bringing new families to treatment. As an example, the University of New Mexico Neurology Department now sees just as many patients with the Common Hispanic Mutation Joyce Gonzalesas they do stroke patients. Nowhere else in the world could this be true.

Joyce Gonzales, our staff genealogist, has worked to create a family tree of the illness that helps us know where to focus our efforts, and she has pinpointed what we believe is the founding couple: Cristobal Baca II and his wife Ana Morena de Lara. Joyce has just completed work on an article entitled A Tale of the Three Cristobals that shares the story of this prominent family. For most of us, CCM is confined to our small family or to ourselves. In New Mexico, CCM is part of history.

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 January 2, 2019

Please welcome Tracy Brown and Kristen Dahlem

Angioma Alliance is pleased to announce that the opening of 2019 brings with it the addition of two staff members, Tracy Brown and Kristen Dahlem.

Tracy BrownTracy Brown is the new Angioma Alliance Engagement Specialist with primary responsibility for developing Community Alliances, our geographically-constrained volunteer groups that carry out the mission of Angioma Alliance in the group’s area, and for facilitating the Community Alliance’s mission activities. Development Director Stephanie Alband will continue to facilitate the groups’ fundraising activities. Tracy brings to the position previous experience in education, event planning, fundraising, and social media, as well as a passionate, personal commitment to our work as the mother of Zach Brown who has a brainstem cavernous angioma. Tracy is the founder of the Zach Brown 5K, which recently celebrated its 6th run. This event inspired many other members of our community to host their own awareness and fundraising walks over the years. Tracy has served on the Angioma Alliance Board and has been the event co-chair of the Greater DC Community Alliance. You can reach Tracy at tracy@angioma.org

Kristen DahlemKristen Dahlem is the new Angioma Alliance Clinical Research Specialist. The Clinical Research Specialist is the Angioma Alliance team member who will be able to respond to the request, “Tell us about your members” using data and who can assist researchers and industry in bringing this information to bear toward their work for better treatments. The Clinical Research Specialist will also be part of the Angioma Alliance research recruiting team, working to engage members as informed research participants and promoting research participation opportunities. Kristen is a registered nurse with many years in medical data management and is a functional medicine certified health coach. Kristen is a co-author of the Angioma Alliance Clinical Care Consensus Guidelines and has served as a member of the Angioma Alliance Board, our science committee, and as chair of the Tri-State Community Alliance. Kristen was diagnosed with cavernous angioma as a young adult. You can reach Kristen at kdahlem@angioma.org.

Please welcome Tracy and Kristen as they help us to achieve our mission of informing, supporting, and mobilizing those affected by cavernous angioma and driving research for a cure.

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December 20, 2018

End of Year Message

2018 has been a turning point in our work toward cavernous angioma treatments. 2019 will be equally important. I share my thoughts in this short end of year video.

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November 10, 2018

Moving Forward: 2030

The future is coming and it's looking pretty spectacular. At the family conference in Silver Spring, I was able to share my vision of 2024 and 2030 with our attendees. I've uploaded a PDF of my Good, Better, Best: Envisioning the Future slides, and you can watch the presentation on our YouTube channel along with the other expert presentations from the conference.