Dr. Linda Rozell-Shannon and her daughter, Christine, reside in upstate New York. Linda founded VBF after her daughter was born with a hemangioma on her lower lip and she was unable to find information on treatment options. Dr. Waner surgically removed Christine’s hemangioma in 1995. Linda and Dr. Waner wrote the only book for parents on the subject of birthmarks called “Birthmarks: A Guide to Hemangiomas and Vascular Malformations.” Linda is also a chapter author in the Facial Plastic Surgery Clinics of North America textbook on “Vascular Birthmarks of the Head and Neck” (published in 2001), which was guest edited by Dr. Marcelo Hochman. Dr. Linda completed her PhD in 2008 at Walden University. Her dissertation topic: Assessing the Impact of Hemangiomas on Maternal Stress, was written to support insurance appeals for families denied coverage.
Tiffany Ethington lives in Kentucky and has worked behind the scenes for years, helping with projects and supporting efforts concerning Sturge-Weber syndrome (SWS). Her son, Glen, was born with the rare disease. Tiffany, along with others affected by SWS, helped to found the Sturge-Weber Syndrome Community (SWSC). Tiffany and Glen have been advocates for SWS and vascular birthmarks, and have spearheaded fundraising campaigns and awareness projects. Tiffany also serves as the Patient Advocate and Welcome Volunteer for the SWSC.
Sarah Kenis was born with a complex lymphatic and vascular malformation on her right axillary. She has undergone numerous operations and procedures to manage her malformation. She attended Lewis University on an athletic scholarship for swimming, and graduated with her BSN in 2014, and accomplished All-American status in her swimming career. She has been a Neonatal Intensive Care Nurse since graduating, and has worked at Children’s National Medical Center, Joe DiMaggio Children’s Hospital, and as a travel RN in South Florida. She is currently enrolled in the Doctor of Nursing Program at Rush University, with a specialty in Pediatric Primary Care. Her goal for the DNP program and her work with VBF, is to help establish a set of guidelines for infantile lymphatic and vascular anomalies in order to provide early and accurate treatment.
Corinne Barinaga has a BA in Communications and Advertising. She lives in the Seattle, Washington area with her husband and their four boys. Their son, Nicholas, had a large segmental hemangioma. Corinne’s quest to learn about her son’s condition resulted in her becoming the manager of the MSN Vascular Birthmarks Support Group. She is a staunch advocate for parents. Her mission is to educate the public and physicians about the latest information concerning the diagnosis and management of vascular birthmarks. She is available to answer your questions and direct you to the appropriate physician and family resources. Corinne generously donates her time to working with families on an individual basis to address their specific needs.
Jody Lee and her husband, John, live with their daughter, Meghana in Lake Orion, Michigan. Meghana was born in 2015 with a port wine stain on the right side of her face. Prior to starting treatment, the Lee family connected with the VBF and received invaluable support and advice. Meghana is being treated at the University of Michigan by Dr. Jeff Orringer and has had 9 laser treatments to date. The Lee family organized the 1st Purple Polka Dot Race in August 2015, and has make it an annual event to raise awareness for vascular birthmarks and fundraise for the VBF. Jody is a physical therapist and works with people who have spinal cord and traumatic brain injuries.
Debbie Lee joined the Board in January 2020. She became a VBF supporter in 2015 after her granddaughter, Meghana, was born with a port wine stain on the right side of her face. She is retired and lives in Royal Oak, Michigan. Debbie’s background is in finance and accounting and she was director of finance for a Michigan public school district. Her daughter-in-law, Jody Lee, also serves on the VBF Board.
Glenda Ethington is cofounder of the Sturge-Weber Syndrome Community, a worldwide organization for individuals and families living with Sturge-Weber syndrome (SWS.) Her grandson, Glen, has SWS and she was inspired by his courage to form an Internet support group for SWS, which eventually led to the SWSC chapter membership into the VBF. She has a background in print journalism, and currently resides in Kentucky.
Lauri Firstenberg is a producer and curator based in Los Angeles. She runs the gallery there-there in Hollywood. Lauri has worked with nonprofits and foundations for 25 years, presently working on AG ARTIST GUILD for art and advocacy. She is a parent of Edie Yvonne, who was born with KTS. Lauri returned to the VBF Board in 2017.
Jeff Bergen is a former Navy Corpsman who completed 8 years of active service and was honorably discharged. After the Navy, he went to nursing school and later went on to attain a Master’s Degree in Nursing. As a Registered Nurse, he has worked in infectious disease and oncology nursing, and was a hospital epidemiology nurse. He is certified in infection control and health care quality, and is currently the manager of the Office of Licensure, Accreditation & Regulation at Cedars-Sinai Medical Center in Los Angeles, CA. He is also completing his PhD in Nursing through The Catholic University of America. Jeff is an established patient at the Beckman Laser Institute where receives treatment for his port wine stain.
Dr. Dinah Gonzalez is a board certified ObGyn physician. Dinah is also certified in Integrative Medicine. She has combined these disciplines and has a private practice. Dinah lives and works in Pennsylvania with her husband and fellow Board member Dr. Marvin Kalafer.
Sharon Israel has a BS in human development from Cornell University, an MA from Teachers College, Columbia University, and over 20 years of work experience in education. Her daughter’s Klippel-Trenaunay Syndrome went misdiagnosed until age 4, when her dermatologist referred her to Dr. Rosen who was able to get Olivia on the right path for treatment and pain relief. VBF is thankful for Sharon’s help and support of other parents and families as they navigate the medical, insurance, social and educational world of vascular birthmarks. Sharon is also instrumental as the VBF East Coast events coordinator.
Dr. Marvin Kalafer is a board certified ObGyn physician. Marvin has devoted his career to performing clinical trials in women’s health, Alzheimer’s disease, diabetes, hypertension, and sexual dysfunction. Marvin resides in Pennsylvania with his wife and fellow Board member Dr. Dinah Gonzalez.
Carla Mannix serves as the Insurance Specialist for the VBF network and supports the VBF International Day of Awareness campaign. She advises families on strategies for winning appeals for insurance coverage and prior authorization. Carla has shared her varied experiences as a returned Peace Corps Volunteer, ESL educator, non-profit affiliate developer, and surgical coordinator with VBF since 2014. Her passions are serving the needy and volunteering with social justice and peace groups. She lives in Reading, PA with her husband and three children. Her daughter bravely manages multiple venous malformations in her legs.
Michelle has a BS in Chemical Engineering from UC Riverside. She was born with Arteriovenous Malformation on the right side of her face and attended her first VBF conference in 2016. For the last three years, she has traveled back and forth from California to New York for treatment with Dr. Waner and Dr. O. In 2017, she completed a shadowing internship with Dr. Waner and Dr. O at the Vascular Birthmarks Institute of New York. She has dedicated her time as a volunteer at conferences for multiple years and has been spreading awareness of vascular birthmarks, anti-bullying, and acceptance as a Global Ambassador. She resides in Monterey Park, California and is working towards her goal of matriculating into medical school.
Chelsea was born with a Port Wine Stain birthmark on the right side of her face between her nose and upper lip as well as two hemangiomas that involuted by age four. She has been an active member of the Global Ambassador Program since September of 2018 after discovering the resources, educational tools, and support that the Vascular Birthmarks Foundation provides.
After diving into this incredible birthmark community, she began openly sharing about her birthmark journey, though she spent most of her life hiding her difference. She has networked with community members with birthmarks around the world. Thus, the spontaneous idea of hosting monthly virtual Zoom meetings, now called Birthmark Social, blossomed in April of 2020. The immediate bond and understanding between those who share these little rarities is apparent in each call and aids as a way to share stories, connect in a more personal way, and continue the mission to raise awareness.
Chelsea planted roots in Rock Hill, South Carolina after receiving a Bachelor’s degree in Public Health from the University of South Carolina. She has spent the last six years working for South Carolina’s Department of Health and Environmental Control helping the retail food industry to provide safe, regulation compliant facilities to their consumers. Her passion lies within health education, community outreach and advocating for inclusion, diversity and acceptance.
My name is Fatima Quddusi and I have a Portwine stain on my right cheek and eyelid. I was born and raised in Pakistan which is also where I completed my medical school. VBF became a part of my life as I received Pulsed Dye Laser therapy for my PWS during medical school. I was an active participant in its social media group and benefited greatly from the positive and supportive perspective of its wonderful members and families. That is also the time I sensed a direction for my lifelong passion of helping children and families facing vascular malformations. I am now a resident in Pediatric & Adolescent Medicine at the Mayo Clinic in Rochester, MN and have a diverse research experience in pediatrics as well as in dermatology. My ultimate goal is to become a Pediatric dermatologist and to develop a better understanding about the etiology, clinical presentation and therapeutic interventions employed for various birthmarks and vascular malformations.
Dr. Martin C. Mihm has more than 50 years of experience specializing in dermatopathology. He is founder of the Vascular Anomalies Program at Massachusetts General Hospital, and director of the Mihm Cutaneous Pathology Consultative Service through the esteemed Brigham and Women’s Hospital. Known for his knowledge concerning problematic pigmented lesions, lymphoma and dermatological inflammatory diseases, he is an integral figure for the medical centers continued success. In addition to his work in this position, Dr. Mihm shares his expertise with students as a professor of dermatopathology and dermatology at the Harvard University School of Medicine. Dr. Mihm received an AB from Duquesne University in 1955. He continued at the University of Pittsburgh to earn an MD in 1961. In 1990, he was honored with an MA from Harvard University.
Dr. J. Stuart Nelson is Medical Director of the Beckman Laser Institute and Medical Clinic, and Professor of Surgery and Biomedical Engineering at the University of California Irvine Medical Center. He is also the Director of the Vascular Birthmarks and Malformations Diagnostic and Treatment Center. Dr. Nelson’s university-based clinical practice and research combines his expertise in engineering, optics, medicine, and surgery. He has published more than 340 scientific articles and 15 book chapters
Dr. Milton Waner is a pediatric facial plastic surgeon and is a director of the Vascular Birthmark Institute at the Lenox Hill Hospital in New York. Dr. Waner earned his M.D., B.Ch. degree at the University of Witwatersrand Medical School in Johannesburg, South Africa. After graduating, he completed his internship and general surgical training at the University of the Witwatersrand affiliated hospitals and his residency was conducted in the Division of Otolaryngology/Department of Surgery at the University of Witwatersrand. He also completed a research fellowship in head and neck cancer at the University of Cincinnati Medical Center. He then took up a faculty position in the Department of Surgery at the University of Sydney in Australia. In 1988, he left Australia to take up a faculty position in the Department of Otolaryngology at the University of Arkansas for Medical Sciences. In 2001, he was promoted to the rank of Professor in the Department of Otolaryngology at the University of Arkansas for Medical Science in Little Rock. He also held the Benjamin and Milton Waner Endowed Chair in Pediatric Facial Plastic Surgery at Arkansas Children’s Hospital.
Dr. Roy G. Geronemus is the Director of the Laser & Skin Surgery Center of New York. He is a Clinical Professor of Dermatology at the New York University Medical Center where he has founded its laser program and served nine years as its Chief of Dermatologic and Laser Surgery. He is also the Director of the Skin/Laser Division in the Department of Plastic Surgery at the New York Eye & Ear Infirmary. He has been involved with the development of several new laser systems and therapeutic techniques, which are now commonly used throughout the world. He has been listed in New York Magazine’s Best Doctors in New York 12 times, three times in Woodward and White’s Best Doctors in America and in Town & Country’s Best Cosmetic Surgeons. Dr. Geronemus is also the Chairman of the Board of the New York Stem Cell Foundation.
Dr. Giacomo Colletti is one of the leading facial surgeons in Europe for complex vascular malformations and has a particular interest in the diagnosis, classification, and treatment of AVMs. He is a distinguished Maxillo Facial Surgeon at the University of Milan San Paolo Hospital and is also an Assistant Professor at the University of Milan.
Dr. Tombris is a graduate of the Democritus University Medical School and the Aristotle University Dental School. He was trained in Oral and Maxillofacial Surgery at Tufts University, Boston, MA. Dr. Tombris was a surgical consultant at the Hemangiomas and Vascular Malformation Clinic (Director Prof. Martin Mihm) at Massachusetts General Hospital, Harvard University Medical School. In 2002, he continued his training on vascular lesions of the face, at the Arkansas Children’s Hospital with Prof. Milton Waner. Returning to Greece he served as the Director of the Oral and Maxillofacial Surgery Department at Athens Naval Hospital. Since 2005, he is the Director of the Oral and Maxillofacial Surgery Department at Athens Euroclinic Hospital and Children’s Euroclinic Hospital. Currently he is an affiliated expert to the Vascular Birthmark Institute at the Lenox Hill Hospital in New York and the Zentrum für Vasculäre Malformationen at the Werner Forßmann Hospital in Eberswalde, Germany.
Dr. Stavros Tombris is Founder of the European Vascular Anomalies (EVA) Clinic and Director of the Oral and Maxillofacial Surgery Department at Athens Euroclinic Hospital and Children’s Euroclinic Hospital in Greece. Currently, he is an affiliated expert to the Vascular Birthmark Institute at the Lenox Hill Hospital in New York and at the Werner Forßmann Hospital in Eberswalde, Germany. Dr. Tombris is also host of the 2019 International Congress on Vascular Anomalies & VBF iTEAM Conference in Athens, Greece.
Dr. Robert Rosen, an expert in interventional radiology and endovascular surgery, is Director of The AVM Center of New York at Lenox Hill and founder of the Division of Interventional Radiology at NYU’s Medical Center. A lecturer and author, he has created many specialized techniques and medical devices. Dr. Rosen generously hosts the VBF Conference and Clinic every other year in New York City.
Emily Lang serves as the Director of Communication for VBF. With over 10 years of marketing and communication experience for non-profits (including the Clark Art Institute, Proctors Theatre, and the Ohio History Connection), Emily brings her passion for digital marketing and communications to VBF. A graduate of Kent State University with a bachelors degree in history and minors in women’s studies and Jewish studies, Emily also earned a masters degree in history museum studies from The Cooperstown Graduate Program in Cooperstown. She resides in Albany.
Lauren has been with VBF since the very beginning, joining as Office Manager in 2000. She received a Master’s degrees in Archaeology and Education from the University at Albany and Union College respectively, and has many years of experience working in the education field. Since joining VBF, she has been inspired by those affected by vascular birthmarks and is committed to VBF’s dedication to those affected by vascular birthmarks and their families. Lauren lives in the Albany area with her family and 30 parrots.
1st Sergeant Scott Cupples of the United States Air Force first contacted Dr. Linda Rozell-Shannon and the Vascular Birthmarks Foundation (VBF) to attend their annual conference being held in New York City on October 8, 2016. Scott has an “aging” Port Wine Stain which means it was beginning to thicken, change texture, and develop nodules. Scott, who also works in corporate finance, joined the VBF team in early 2017 and is now leading the Global Ambassador program. He serves as a positive role model and spokesperson for individuals living with a vascular birthmark.
Dylan reached out to the Vascular Birthmarks Foundation in hopes of utilizing his skills and influence in any way fit to give back to a community that he has long been apart of. He acquired a B.A. in Public Policy with extensive coursework in Media and Cultural Studies from the University of California, Riverside. Along with his 9 years of experience in the legal field, his background is deeply rooted in brand marketing, social media management, graphic design, video editing, and music production. Dylan aspires to combine his experiences living with a Port Wine Stain with his diverse set of abilities to help further the goals of the Foundation while being able to reach out and connect with individuals and families affected by vascular birthmarks.
Bill joined VBF in 2020 to assist with the technology needs specific to non-profits. Bill holds a B.A. and M.S. in Information Science from the State University of New York in Albany, plus several certifications. Bill has over 15 years experience providing technology support and management to non-profit organizations, including healthcare, education, libraries and government entities.
Christine Shannon is the daughter of Dr. Linda, president and founder of the Vascular Birthmarks Foundation. Christine joined VBF in 2020 to sharpen her skills in social media and graphic design. She has been a freelance marketing and graphic designer in addition to three years of experience in the education. Christine graduated from SUNY Albany with a B.A. in History and from Clarkson University with a Master of Arts in Teaching. She resides in Schenectady, NY with her two cats. Christine looks forward to learning from and contributing to VBF.