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.
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 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.
Tony became involved with the Angioma Alliance after his son (1 year old at the time), had a seizure and was diagnosed with multiple cerebral cavernous angiomas. In July of 2012, Cincinnati Children’s Hospital removed a hemorrhaging cavernous angioma from Dylan’s right frontal lobe. Dylan’s recovery has been great and they will continue to monitor his other smaller cavernous angiomas. Tony has a Bachelor of Business Administration (BBA) degree from the University of Saint Francis (IN), where he also played varsity football and baseball. He currently works for Procter & Gamble, as a Category Development Manager and resides in Cincinnati, OH. He is married to Cari and has 21 month old twins (Kendall-girl and Dylan-boy). After genetic testing it has been determined that his wife has the same genetic mutation as Dylan. However, a brain MRI shows no cavernous angiomas present. Tony will be helping with fundraising and social networking to bring awareness and funds for research to Angioma Alliance.
Kristen was born and raised in Michigan. She received her BA in business from Michigan State before moving to Los Angeles for law school. She graduated from UCLA Law School in 2000. Immediately following law school, Kristen worked managing a yoga studio, teaching yoga and writing. She published a book called Yoga Nap under her maiden name Kristen Rentz and then went on to practice law. She began her law practice as a civil litigator working for a boutique entertainment litigation firm. After a few years of working on large scale cases for big industry clients, Kristen decided she wanted to shift her focus to a more heart driven practice and became a children's rights attorney. She worked at an organization called Children's Law Center as a dependency attorney, representing foster children in dependency court proceedings until the birth of her son a little over 5 years ago.
Tracy Brown is the mastermind behind the inaugural Angioma Alliance Anywhere Walk. The walk started as the Zach Brown Virtual 5K for Angioma Alliance in honor of her 12-year-old son Zach who has had two brainstem cavernous angioma bleeds. In addition to organizing a large walk in Annapolis, MD, where the Brown family currently lives, Zach inspired three separate walks in their previous hometown of Indianapolis. These walks included family, friends, and former classmates. Tracy and her son Zach also have made multiple trips to Capitol Hill to visit legislators in support of the Cavernous Angioma Research Resource Act. Tracy plans to use her organizational and fundraising skills to support any Angioma Alliance member who would like to host an event and to continue her advocacy for a cure.
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'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.
Myrna Sarowitz, Psy.D.
In 2010, two years after her first symptoms, Myrna was diagnosed with a cavernous angioma in her spinal cord. After successful surgery, Myrna continues to experience numbness and tingling in her legs. Myrna is unusual in that her first symptoms did not appear until she was already in her 60's.
Myrna has had a full career as a teacher, clinical psychologist, and now as a life coach. Myrna joined the Angioma Alliance Board of Directors in 2015 to assist Angioma Alliance with its peer support efforts. Myrna recreated the program and serves as peer support coordinator.
Tim 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.