Raylene Lewis is the President and Executive Director of AVM Alliance with a background in journalism, marketing and sales. She is an advocate for families dealing with brain vessel disease and stroke. Her passion for this cause stems from her own experience as a mother navigating her son's diagnosis with a grade 5 parietal, occipital, thalamic brain Arteriovenous Malformation (www.avmwarrior.com).
In response to the overwhelming task of finding information, treatment, and support, Raylene and her husband Kyle founded AVM Alliance, a non-profit organization that provides resources, support, and referral services for families dealing with stroke and brain vessel disease. She works closely with other organizations and medical professionals to connect families with the help they need.
Through her monthly podcasts (www.avmalliancepodcast.com)and outreach efforts, Raylene is educating the community that stroke has no age limit. Her mottos, "Sivako! -- Rise to the challenge," and “Help others as if it was you who needed help” is evident throughout The AVM Alliance.
Kyle Lewis is the Vice-President of AVM Alliance with a background in construction estimation and project management. His son's diagnosis of a large grade brain AVM brought him into the world of rare disease where he regularly counsels fathers of children dealing with brain vessel malformations and stroke. When the first few groups of doctors told Kyle they could not help his son and did not want his child as a patient, Kyle turned his attention to learning about the brain, brain vessel disease, and published medical research on treatments. His hard work and extremely detail oriented personality as well as his experience in area management help AVM Alliance maximize every opportunity provided. Kyle's motto, "care about the work you do and the results that come from it" help make AVM Alliance a strong organization committed to making things better for the community it serves.
Kyler Lewis is a board member of AVM Alliance. At the age of 15 he suffered a hemorrhagic stroke when the AVM he had no idea he was born with ruptured spilling blood into the surrounding tissue. Kyler was awarded the Pediatric Stroke Hero Award for 2022 by The American Heart / Stroke Association. He regularly sends videos to children and young adults who are dealing with brain vessel disease and stroke encouraging them in their recovery and showing them they’re not alone. With his service dog Sam by his side, Kyler shares his story as a pediatric stroke survivor. His goal is to educate and inspire others using social media as well as local news interviews and community functions to document his recovery and teach the public stroke has no age limit. Kyler says, "I did not lose the ability to speak, so I will speak up for those who can not, and I will tell the story of brain vessel disease and that anything is possible. Pediatric stroke survivors, be brave, have hope and know you are not alone, we are here for each other. With love, support, determination and hard work, we can all be heroes of our own story."
Billene Cannon is a board member and the secretary for AVM Alliance. In addition to working as an advocate for pediatric stroke, she has over twenty years of experience as the president of Conference Management Services a full-service international management company specializing in the complete management of both technical and non-technical conferences, workshops, seminars, and symposia. Her philosophy at work of "clients first because exceeding expectations provides the foundation for our success and the success of our clients" has been instrumental in organizing successful awareness and fundraising campaigns for AVM Alliance.
Heather Golladay brings a wealth of experience to her role as Senior Manager and Graphic Arts Designer at AVM Alliance. With a rich background in marketing and sales, Heather's journey with AVM Alliance began at its inception, intertwined with a deeply personal connection. Witnessing her best friend's son's battle against a stroke and subsequent AVM diagnosis at the tender age of 15, Heather's involvement commenced as a genuine emotional journey. From those earliest days, Heather has walked alongside them on the tumultuous path of AVM challenges, fanning the flames of her commitment for raising awareness. Three years after starting her volunteer work, her dedication reached new heights when her own husband experienced an ischemic stroke. This poignant experience further kindled her already blazing ardor.
Heather's creative endeavors are focused on creating images that visually translate the pediatric side of childhood strokes, revealing the unspoken tales of pediatric resilience. Heather's experience, passion, and heartfelt connection have helped to elevate AVM Alliance to be a beacon of hope and inspiration for all those touched by this challenging journey.
Rilynn Lewis is a highschool senior, and in addition to acting as an invaluable volunteer for the day to day tasks of AVM Alliance, she is an ambassador for the Aneurysm and AVM Foundation. Rilynn works as a teen advocate and political lobbyist sharing the story of her brother's rare disease and bringing attention to changes that need to be made to improve the lives of families who are dealing with medically complex children. Rilynn sends videos and letters to siblings of children affected by brain vessel disease while spreading awareness at every opportunity that stroke is the number 6 cause of death in children. "My brother has disease that is defined as rare because it affects 18 out of every 100,000 people, so the public consensus is the word RARE means there is no need to pay attention, but 25 million people in the United States and 400 million people world wide are dealing with a "rare" disease, so everyone should be paying attention. A disease is only rare until it happens to you or someone you love!
Pediatric Neurologist University of California San Francisco
Dr. Rachel Vassar, MD
Rachel Vassar is a pediatric neurologist specializing in cerebrovascular conditions (disorders that affect blood flow to the brain). She is passionate about patient care and research on acute brain injury after ischemic or hemorrhagic stroke (strokes caused by blocked or ruptured arteries, respectively) as well as after cardiac arrest. She is also interested in genetic conditions associated with abnormal changes to the brain's blood vessels.
Vassar's research focuses on predicting patient outcomes after acute brain injury by linking findings from neuroimaging (using techniques such as MRI to produce images of the brain) with various disease factors. She is UCSF's principal investigator for P-ICECAP, a multicenter trial funded by the National Institutes of Health on therapeutic hypothermia (lowering body temperature to protect the brain) after cardiac arrest in pediatric patients. She works with neuroradiologists (specialists in imaging the nervous system), neurointerventionalists (specialists in minimally invasive treatments for blood vessel abnormalities in the brain) and geneticists, as well as other pediatric neurologists, to better understand what causes hemorrhagic stroke in fetuses, newborns, children and young adults.
Vassar earned her medical degree at the Boston University Chobanian & Avedisian School of Medicine. She completed a residency in child neurology and a fellowship in vascular neurology at UCSF.
Vassar is a member of the American Academy of Neurology, Child Neurology Society, International Pediatric Stroke Organization and American Heart Association. She received a Gold Award at the UCSF-Stanford Pediatric Device Consortium as well as a Young Investigator Award from the San Francisco Neurological Society.
Critical Care & Vascular Neurologist Massachusetts General Hospital
Dr. Patricia Musolino, MD, PhD
Dr. Patricia Musolino is a critical care and vascular neurologist with expertise in white matter and cerebrovascular disorders. She is assistant professor of neurology at Harvard Medical School and the co-director of the pediatric stroke and cerebrovascular service at Massachusetts General Hospital. Dr. Musolino clinical and research expertise revolves around the translation of discoveries in human genetics to clinical application in white matter and cerebrovascular disorders.
Following training in neurosciences, imaging and molecular biology acquired during her MD and PhD in her native Argentina and post-doctoral training at Harvard. Dr. Musolino completed dual training in pediatric and adult neurology with specialization in critical care and stroke at Massachusetts General Hospital. Dr. Musolino’s laboratory focuses on leveraging insights from neuroimaging and gene-editing tools to understand how single genes mutations alter blood brain barrier and cerebrovascular function and develop therapies to improve the quality of life of patients with rare neurological disorders. This novel approach has led to multiple high impact publications and the development of pre-clinical tools to develop gene targeted therapies for single gene disorders causing neuroinflammation and stroke at a young age.
Working hand to hand with patients and advocacy groups Dr. Musolino is also developing an international network and resources to maximize the life potential of children and young adults affected by these disorders. Dr. Musolino’s is the recipient of several awards from NINDS, the Hearst and Child Neurology Foundation, MGH Executive Committee on Research and the 2017 Herbert Pardes Clinical Research Excellence Award from the National Clinical Research Forum for the first gene therapy trial in a cerebral demyelinating disorder of childhood.
Dr. Stuart Fraser, MD, has been committed to enhancing the quality of life for patients afflicted with cerebrovascular disease since his early years in medical school. He serves as a pediatric neurologist and vascular neurologist at UT McGovern Medical School. In addition to his clinical responsibilities, Dr. Fraser is the director of the UTHealth Pediatric Stroke Program. He is also actively involved in clinical research, contributing at both the institutional and international levels through his work with the International Pediatric Stroke Study.