Tony Mayer – Chair
Tony became involved with the Alliance to Cure Cavernous Malformation in 2012, after his son Dylan (1-year-old at the time), had a seizure and was diagnosed with multiple cerebral cavernous malformations. Dylan had surgery at Cincinnati Children’s Hospital to remove a hemorrhaging cavernous malformation from his right frontal lobe. In 2015, another cavernous malformation regrew in the same location and required a second brain surgery. Today, Dylan is doing well and his other cavernous malformations 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, along with Dylan, is the father to Dylan’s twin sister Kendall. and Dylan. Tony’s focus has been on fundraising activities, until recently, when he was appointed as Chair. He has organized the Dylan Mayer Rock N Bowl (2013 -14) and Cavernous Angioma Night at Great American Ball Park in Cincinnati (2015 – 2019.)
Connie Lee PsyD – President and CEO
Connie is the founding President of Alliance to Cure Cavernous Malformation. Connie is a clinical psychologist and the mother of a daughter with multiple cavernous malformations. Connie’s personal story with cavernous malformation 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 malformation. Julia has had three additional cavernous malformation 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, active young woman and lives with her mother in Charlottesville, Virginia. Connie has grown Alliance to Cure Cavernous Malformation from her kitchen table to the premiere international organization that it is today.
Karen Buck – Treasurer
Karen has served on the Alliance to Cure Cavernous Malformation Board of Directors as Treasurer since 2007. Karen has had a long career in accounting and IT; 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 malformations. Karen’s daughter and grandson have also been diagnosed with multiple angiomas. Her family is affected by a mutation of the CCM3 gene.
Rona GOMEL Ashe
Rona is a non-profit strategy and marketing consultant whose daughter Sarah was diagnosed with a cavernous malformation while a freshman at college. Her daughter had a successful surgery and is thriving. Rona has managed projects across different sectors and has supported organizations as they develop and grow with strategic planning, marketing strategy, branding, naming, and governance projects. Her professional history includes holding the position of Vice President of Interactive Ventures for HBO where she was responsible for the nationwide launch of HBO on Demand and the development of HBO’s broadband business. Rona’s non-profit expertise is an invaluable resource for our growing organization. Rona splits her time between Marin County, CA, and Atlanta, Georgia.
Isaac is the founder and CEO of Handmade Ventures, a mobile/enterprise SaaS executive advisory and angel investor group that assists great entrepreneurs and new startups in a co-founding partnership. He is also a sell-side M&A Advisor for SaaS companies as a registered representative offering securities and investment banking services through Britehorn Securities. Isaac’s son has an inoperable brainstem cavernous malformation, and Isaac is passionate about finding a cure. Isaac’s experience guiding startups has been an important resource both for Alliance to Cure Cavernous Malformation and for the small biotech companies that are beginning to develop treatments for cavernous malformation. Isaac has also been hosting an annual themed fundraiser at his home in the San Francisco Bay area.
Julie is from the hills of Northwest Connecticut. She joined the Board of Directors after learning that her granddaughter was diagnosed with cavernous malformations, 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 Master’s Degree in Taxation from the University of Hartford. Her mother was first diagnosed with cerebral cavernous malformations in 1992. Her daughter was diagnosed in 2005 after having a seizure while away at college, and this is when the family first found Alliance to Cure Cavernous Malformation. Along with providing her expertise as a CPA, Julie hosts an annual wine-tasting fundraiser in Torrington, Connecticut.
Tyler is the CEO of The Fairbank Group, LLC, the entity that manages Jiminy Peak Mountain Resort, LLC (Hancock, MA), Cranmore Mountain Resort, LLC (North Conway, N), Ski Bromley, LLC (Peru, Vermont), EOS Ventures, LLC (Hancock, MA), Bullwheel Productions, LLC, SnowGun Technologies and various other endeavors. In addition, Tyler serves as the President of Jiminy Peak overseeing day-to-day operations. Tyler was diagnosed with a brainstem cavernous malformation which was successfully removed. He is excited to bring his business and non-profit experience to the work of Alliance to Cure Cavernous Malformation. His recovery story is briefly told in the video Road to Recovery. Tyler has also been hosting an annual fundraiser in northwest Massachusetts.
Kimberly Foley, MD
Dr. Foley is a Critical Care Medicine, Internal Medicine, and Pulmonary Disease specialist practicing in Bermuda, Brooklyn NY, and eastern Pennsylvania. She has served on the Alliance to Cure Cavernous Malformation Board of Directors since 2019, joining soon after her diagnosis. Dr. Foley has been found to have a mutation of the CCM1 gene. Her young daughter has since been tested and also has the mutation. Dr. Foley has been advising on clinical and DEI matters.
Tim lives with his family in Santa Fe, New Mexico. He has been involved in cavernous malformation 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 mildly asymptomatic but has not required surgery. 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 Alliance to Cure Cavernous Malformation. Since then, he has been an active member of the New Mexico Brain Network and organized a CCM support group. Tim and his wife Sandra are interviewed regularly on radio, television, and in newspapers, because they have become the voice of patients with the Common Hispanic Mutation in New Mexico. He hopes to continue engaging others in efforts to put an end to CCM.
Liz’s journey with cavernous malformation began in January 2000, when her 2-year-old son Jake was diagnosed with cavernous malformation 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 Alliance to Cure Cavernous Malformation 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 major donor development. Liz is employed as a political fundraising and field organizer for local and national campaigns in the Bakersfield, CA area.
Kandance Weems Norris
Kandance has been involved with Alliance to Cure Cavernous Malformation since 2006 when she attended her first family conference after experiencing a cavernous malformation hemorrhage and related seizures. Her lesion is considered inoperable. This is Kandance’s second stint on our Board, previously serving from 2010 to 2013. Kandance is an attorney, and business law professor, and is an executive recruiter with McKinsey and Company. She is a graduate of Spelman College, Harvard Law, and Harvard Business School. Kandance assists Alliance to Cure Cavernous Malformation with legal matters and advises on health equity initiatives. She lives in Durham, NC with her husband and son.
Dinah Winchester and her husband Evan joined the Alliance to Cure Cavernous Malformation Board of Directors in 2020 because they want to do everything in their power to find a cure for their young daughter, Linnea, who underwent emergency surgery in 2019 to remove a hemorrhaging cerebral cavernous malformation (CCM) caused by a CCM3 genetic mutation (Dinah and Evan do not have the mutation). Since connecting with Alliance to Cure Cavernous Malformation through a web search, Dinah and Evan have found hope that a cure for Linnea’s condition is within reach; meanwhile, they are following Alliance to Cure Cavernous Malformation’s recommended dietary practices for Linnea and have enrolled Linnea in relevant research studies. Dinah brings to the Board her experience as a former Communications and Advocacy Specialist for Save the Children and a credentialed high school English teacher. She grew up in northern Virginia and attended Northwestern University (B.A.) and Stanford University (M.A.) before moving to Sacramento, California, where she lives with Evan and Linnea.
Last update 4.14.22