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Board of Directors

Angioma Alliance is expanding our Board of Directors. If you may be interested in joining the Board or would like to refer an associate, please visit our Board Membership Information page.

 

Tony Mayer - Chair

Tony became involved with the Angioma Alliance in 2012, after his son (1-year-old at the time), had a seizure and was diagnosed with multiple cerebral cavernous angiomas. He had surgery at Cincinnati Children's Hospital to remove a hemorrhaging cavernous angioma from his right frontal lobe.  Then in 2015, another angioma regrew in the same location that required a second brain surgery.  Today, his son Dylan, is doing well and his other cavernous angiomas are being monitored. Tony has a Bachelor of Business Administration (BBA) degree from the University of Saint Francis (IN). He currently works for Procter & Gamble, as Sales Manager and resides in Cincinnati, OH. He is married to Cari and has 7-year old twins, Kendall and Dylan. Tony's focus has been on fundraising activities, until recently, when he was appointed as Chair.  In addition, Tony has served as Chair for multiple fundraising events.  The Dylan Mayer Rock N Bowl (2013 -14) and Cavernous Angioma Night at Great American Ball Park in Cincinnati (2015 - Present.) 

 

Connie Lee PsyD - President and CEO

Connie Lee is the founding President of Angioma Alliance. Connie is a clinical psychologist and the mother of a daughter with multiple cavernous angiomas. Connie’s personal story with cavernous angioma began in January, 2000. At that time, Connie’s 4-month-old daughter Julia received brain surgery for a major hemorrhage and hydrocephalus caused by a cavernous angioma. It was not known that she had the condition, and by the time Julia was taken to the operating room she was near death. Her neurosurgeon performed a craniectomy, stopped the bleeding and removed the angioma. Since then, Julia has had three additonal cavernous angioma surgeries and a T2-L3 spinal fusion to correct scoliosis which is believed to be associated with the CCM3 mutation that is causing her illness. Today, Julia is a bright, outgoing, active young adolescent who loves to swim and ride horses. 


 

 Karen Buck - Treasurer

Karen Asbury

Karen Asbury serves on the Angioma Alliance board of directors as Treasurer. She is also working with Connie to found the CCM3 Action Group. Karen has had a long career in accounting; currently she is a Manager in Information Technology for the New York Times- Shared Services Center in Norfolk, VA.  Karen lost her 53-year-old husband Mitch in 2010 to a rare cancer that developed at the site of his previous brain surgery for cavernous angiomas. Karen’s daughter has also been diagnosed with multiple angiomas. She is the third generation to be diagnosed through MRI and genetic testing. She is a participant in the Biobank as well as our International Patient Registry as was her father. 

 

Julie DeMichiel


JuliaDeMichiel

Julie is from the hills of Northwest Connecticut. She joined the Board of Directors after learning that her granddaughter was diagnosed with cavernous angiomas, becoming the fourth generation diagnosed with the CCM1 mutation.

Julia is married with three children and is the CFO of an industrial distribution company, Binding Source LLC. She has a Masters in Taxation degree from the University of Hartford. She co-hosts the Annual Wine-tasting event in Goshen, CT to help support Angioma Alliance.ation. Her mother Julia was first diagnosed with cerebral cavernous malformations in 1992. Her daughter was diagnosed in 2005 after having a seizure while away at college.

 

Liz Neuman

Liz NeumanLiz Neuman's journey with cavernous angioma began in January, 2000, when her 2-year-old son Jake was diagnosed with cavernous angioma and underwent brain surgery. It wasn't long before her younger son Sam was also diagnosed. Sam has undergone multiple brain surgeries to remove hemorrhaging lesions. Once the CCM3 gene was identified, Liz and her husband were tested. Liz was identified as the carrier of the mutation, although she has remained only mildly symptomatic. 

Liz has been involved in fundraising for Angioma Alliance since 2004. She has worked with MadoroM Vineyards, owned by the Amador and Blom families, to raise hundreds of thousands of dollars to support our work toward a cure. Liz finally joined our Board of Directors in 2015 where she continues to focus on fundraising efforts and also serves on the Science committee. Liz is employed as a political fundraising and field organizer for local and national campaigns in the Bakersfield, CA area.

 

 Tim Gallegos

 Tim GallegosTim Gallegos lives with his family in Santa Fe, New Mexico. He has been involved in cavernous angioma advocacy since the passing of his 9-year-old daughter Jenae in 2005. Jenae’s life was claimed by a cerebellar hemorrhage. Despite her Hispanic heritage, Jenae had not been diagnosed before her bleed. After her death, the family received genetic testing and Tim’s wife Sandra and youngest son Joel were diagnosed. Sandra has been asymptomatic. Joel had surgery in 2013 to remove a lesion that was causing seizures.

Tim organized a major fundraiser in 2006 that raised $26,000 to benefit Angioma Alliance. Since then, he has been an active member of the New Mexico Brain Network, organized a CCM support group, and developed a pamphlet to encourage early diagnosis. Tim and his wife Sandra are interviewed regularly by radio, television, and newspapers because they have become the voice of patients with the Common Hispanic Mutation in New Mexico. Tim is participating with researchers and clinicians from the University of New Mexico in developing a major grant proposal to encourage early diagnosis. He hopes to continue engaging others in efforts to put an end to CCM.

Isaac Babbs

Find Isaac's profile on LinkedIn.

 

 Last update 1/1/2019