The Vascular Birthmarks Foundation
Dr. Linda Rozell-Shannon, PhD President and Founder
Dr. Linda Rozell-Shannon, PhD President and Founder
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.
Lauri Firstenberg is a producer and curator based in Los Angeles with over 25 years of leadership in the nonprofit sector. She is a parent of Edie Yvonne, who was born with Klippel-Trenaunay Syndrome (KTS). Lauri returned to the VBF Board of Directors in 2017 and now serves as Board Chair. She received her Ph.D. from Harvard University in the History of Art and Architecture department. Lauri is the founder of LAXART and IF Innovation Foundation and a founding partner of Via Art Fund.
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 has 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.
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.
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.
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.
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.
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.
Michelle is a 20-year advertising professional with assignments across Asia – Philippines, China, Singapore and Cambodia. She, her husband (Jake), and, son (Jackson) moved to Greenwich, Connecticut in 2020. Jackson was born in 2018 in the Philippines and had a large infantile hemangioma across his chest. VBF became an information resource, provided advice, and connected the family to US-based specialists.
Michelle is currently working with the family-run start-up, American Outdoor School, overseeing their growth strategy and expansion.
Madelyn Solnikowski is a stay at home mother with four kids. Madelyn is Global Ambassador for VBF and is on the Awareness and Fundraising committees. Her youngest child, Ruby, was born in April 2020 and was diagnosed with infantile hemangiomas.
At 6 weeks old, two strawberry hemangiomas appeared on Ruby; at 10 weeks old, Madelyn noticed a small bluish bump on Ruby’s eyelid. Her pediatrician told her it was a different kind of birthmark which would go away and not to worry. Madelyn followed the doctor’s recommendations, but her instinct told her to keep watching it. Ruby started to have issues drinking milk and Madelyn knew something was wrong. At 8 months, Ruby was diagnosed with an internal hemangioma near her temple.
In her search for information, Madelyn came across VBF and Dr. Linda reached out to her, putting her in touch with VBF Board Member Jody Lee. It was through Jody that Madelyn’s family was connected with their wonderful team of doctors in their home state of Michigan. Ruby is now on propranolol; her hemangiomas are shrinking and she has been in OT and is making improvements.
In Madelyn’s words, “Through this whole journey I have discovered that I have a voice and I will stand up for my daughter and do whatever I feel is right regardless of what doctors may think. I have found a purpose with the VBF and I want to be able to help to ease, educate and inspire other parents! I am so proud to be a Global Ambassador and am excited for the future!”
Helen consults and guides start-up health IT entities and has achieved HIMSS fellow status, CPHIMS, Six Sigma Black Belt and Lean Sensei certifications. She is Chief Strategy Officer, MedicaSoft, and also serves as Executive in Residence, School of Healthcare Business, Massachusetts College of Pharmacy & Health Sciences University, Boston MA. She has served on national committees and Boards including: HIMSS, CHIME, Health 2.0, The Sullivan Institute for Healthcare Innovation, WEDI, SUNY’s Global Institute for Health and Human Rights, the School of Public Health and NAHDO.
Helen serves in several senior advisory roles most recently: Albany College and Allied Health Sciences (President’s Advisory Council); National Health IT Collaborative for the Underserved (Senior Advisor); Health 2.0 (Chair, Innovation Committee, past Chair, Chapter); I AM B.E.A.U.T.I.F.U.L. (Board Member); MCPHS University (Executive in Residence); NAHDO (National Association of Health Data Organizations) (Board Member); and President Elect, HIMSS New York State.
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. 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. 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.
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.
Scott Cupples is the Chief Operating Officer (COO) of the Vascular Birthmarks Foundation (VBF). He has lived his entire life with an untreated Port Wine Stain vascular birthmark until starting treatments in 2016 (thanks to VBF). When talking about his birthmark, Scott says, “Of course there have been times where my birthmark has made me feel insecure or has had a negative impact, but I’ve always had the mentality that it will never keep me from accomplishing what I want in life. My goal with VBF is to help as many families as possible who are affected by vascular birthmarks, be a positive role model in the community, and to continuously spread awareness.”
Previous to his role as COO, Scott established and operated as Director of the VBF Global Ambassador program. In addition to his role at VBF, Scott has served 19+ years in the United States Air Force, currently serving as a First Sergeant in the New Jersey Air National Guard. Scott has an extensive background running high-pace operations, leading accounting departments and being a senior leader in a variety of settings and organizations. Scott holds an MBA from Rowan University, a B.S. in Accounting from Kean University, and is pursuing his doctorates in Business Administration and Organizational Leadership from Thomas Edison State University.
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.
Gina became Marketing & Communications Manager for VBF in June 2022 after working with the organization for a year as Project Associate. With 20 years of project management experience in scientific-, corporate-, and product-based marketing and communications, Gina brings her passion for storytelling, science, health, wellness, marketing, communications, and photography to VBF. Before VBF, she handled social media for Omega Institute for Holistic Studies. Before Omega, Gina spent several years handling communications for Curia (formerly AMRI), a contract research and manufacturing organization, and in various editorial roles within the pharmaceutical trade publishing industry. Gina is a graduate of Rider University with a dual Bachelor’s degree in Journalism and American Studies and a Minor in Women’s Studies. She lives in the Hudson Valley region of New York with her husband, daughter and labrador retrievers.
Sophia is the VBF Marketing & Graphic Design Coordinator. She is a 2020 graduate of Sacred Heart University where she earned a Bachelor’s degree in Marketing, along with Minors in Digital Marketing and Graphic Design. Sophia brings her creative spirit and passion for branding to the VBF team. She lives in upstate New York with her family and her cat, Pumpkin.
Ava has been an exceptionally active member of the VBF volunteer community for years in the VBF Global Ambassador Program. She has led committees on the VBF Global Ambassador council, served as secretary for board committees, assisted and hosted numerous fundraising events, spread awareness through social media, and participated in many conferences and clinics. Ava understands the VBF mission and is looking forward to helping the VBF Global Ambassador Program grow and continue to help promote VBF’s mission.
Missy has been working with VBF since 1999 on website development, IT management, and other technology needs.