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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 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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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.