K-T Support Group 40th Anniversary Conference

Dr. Megha Tollefson is Medical Director of the Vascular Malformations Specialty Clinic at Mayo Clinic and serves as Chair of the Department of Dermatology. She is also President-elect of the Pediatric Dermatology Research Alliance. Dr. Tollefson is deeply committed to caring for patients with vascular malformations and has dedicated her career to improving their quality of life through compassionate, multidisciplinary care. Her work is closely aligned with clinical and patient-oriented research in vascular anomalies, with the goal of advancing understanding and treatment for complex conditions.

Professor Miikka Vikkula, MD, PhD, is an internationally recognized leader in human and medical genetics, with more than three decades of research at the interface of molecular genetics, vascular biology, and rare diseases. He completed his MD–PhD training in molecular genetics at the University of Helsinki (MD 1992, PhD 1993), followed by postdoctoral research at Harvard Medical School (1993–1997), where he worked with Prof John B Mulliken and Prof Bjorn Olsen, and made seminal contributions to the genetic understanding of vascular anomalies. He later obtained a second PhD at UCLouvain, Brussels, Belgium (2000) and was recognized as a specialist in clinical genetics by the Belgian Ministry of Health (2019).

Prof. Vikkula established his independent research group at the de Duve Institute in Brussels in 1997, where he has been a Full Member and part of the Directorate since 2004. He has held successive academic appointments at UCLouvain and has served as Full Professor of Human Genetics since 2013. He has also played major leadership roles, including Coordinator of the Centre for Human Genetics at the Cliniques Saint-Luc, and has been deeply involved in national and international scientific societies, peer review, conference organization, and the training of clinician-scientists and researchers.

Prof. Vikkula is a global pioneer in defining the genetic and molecular basis of vascular and lymphatic anomalies. His group identified the inherited causes of numerous disorders, including venous and glomuvenous malformations, various primary lymphoedemas, and capillary malformation–arteriovenous malformation (CM-AVM1 and 2). The latter they established also as new clinical entities. They demonstrated that the familial forms of vascular malformations that are caused by germline mutations require a second somatic “hit,” providing a unifying explanation for reduced penetrance, phenotypic variability, and lesion progression. He further showed that many sporadic vascular malformations result from somatic oncogenic mutations, including cis-configured TIE2 mutations in blue rubber bleb nevus syndrome, and defined novel genotype–phenotype correlations involving genes such as PIK3CA, GNA11, AKT3, PIK3R1, and EPHB4. These discover

Laurence Boon, MD, PhD is Clinical Professor of Plastic and Reconstructive Surgery at UCLouvain and Coordinator of the Multidisciplinary Center for Vascular Anomalies at the Cliniques universitaires Saint-Luc in Woluwe-Saint-Lambert, Brussels, Belgium. She specializes in the multidisciplinary treatment and translational research of vascular anomalies, leading one of Europe’s foremost expert centers for rare vascular malformations. 

Dr. Boon earned her medical degree (MD) from the Université catholique de Louvain and completed her specialist training in plastic, reconstructive, and aesthetic surgery at the same institution. She obtained her PhD in Plastic Surgery in 2003 and received advanced clinical training in vascular anomalies at Boston Children’s Hospital and Harvard Medical School under the supervision of Prof. John B. Mulliken. 

She has held key leadership roles in the international vascular anomalies community, including chair of the Scientific Commitee followed by Vice President, President and Past President of the International Society for the Study of Vascular Anomalies (ISSVA), and she currently co-chairs the VASCA Working Group of the European Reference Network VASCERN. Dr. Boon has been a member of the Royal Academy of Medicine of Belgium since 2015. 

Dr. Boon is a principal investigator in multinational clinical research, including phase III trials evaluating targeted therapies such as sirolimus for complex vascular anomalies, and serves as an expert reviewer and clinical trial coordinator registered with Orphanet. 

Her clinical and scientific contributions have been widely recognized with prestigious awards, including the INBEV-Baillet Latour Clinical Research Prize and, most recently, the Gagna and Van Heck International Prize for Incurable Diseases for her work advancing understanding and treatment of orphan vascular diseases. 

Dr. Boon has authored numerous high-impact publications in vascular anomalies and collaborates closely with genetic research laboratories to translate discoveries into improved patient care. She plays an active role in patient advocacy and was a co-founder of the VASCAPA patient association to support people living with vascular anomalies. 

She is a highly cited author in the field of vascular anomalies, with an H-index of 61 (Scopus) and

Dr. Alexandra Borst is a clinical pediatric hematologist with an academic focus and national leadership role in the field of vascular anomalies since 2014. She built and co-directed the Vascular Anomalies Program at Vanderbilt University Medical Center and served as Associate Clinical Director of the Comprehensive Vascular Anomalies Program and Co-Director of the Pediatric Hereditary Hemorrhagic Telangiectasia Program at the Children's Hospital of Philadelphia (CHOP) prior to transitioning to her current role as Co-Director of the UNC Vascular Anomalies Program. Through her various research collaborations and endeavors, she remains dedicated to advancing the care of people living with vascular malformations and tumors. She provides a lead role in several multicenter studies collaborating on several national research projects and continues to work with several industry sponsored studies in hematology and vascular anomalies. Dr. Borst's career is dedicated to improving the lives of children and families with vascular anomalies.

In addition to her clinical focus on complex vascular malformations, Dr. Anderson serves on the Mayo Dermatology Education Committee where she leads the subcommittee on resident wellness and is an active member of the Society for Pediatric Dermatology and the Pediatric Dermatology Research Alliance through which she participants in resident and medical student mentorship. Dr. Anderson has research interests in vascular anomalies and pediatric dermatologic conditions including infantile hemangiomas and atopic dermatitis.

Dr. Scott Thompson is an Associate Professor of Radiology in the Division of Vascular and Interventional Radiology and Interventional MRI at Mayo Clinic Rochester.  He is a member of the Multidisciplinary Vascular Anomalies Clinic with a particular focus on multidisciplinary management of  complex lymphatic and venolymphatic disorders and development and clinical translation of new lymphatic and venolympahtic imaging techniques.

Dr. Mark Melin is the Medical Director of the Wound Clinic in the Gonda Vascular Center. Dr. Melin’s clinical interests include dermal lymphatic function in chronic wound care, biofilm mitigation to accelerate wound healing, genomics of wound healing, aerospace medicine and physiology/wound healing /lymphatic function in long duration space travel.

Dr. Adams is a prominent pediatric hematologist-oncologist. She is the Director of the Comprehensive Vascular Anomalies Program, a cutting-edge, multidisciplinary program that seeks breakthrough treatments and cures for children, adolescents and young adults with rare, life-threatening tumors and malformations of the vasculature, which includes the arteries, veins, capillaries, lymphatics and combined lesions.

As a leading expert in the field, Dr. Adams is actively engaged in clinical and translational research on complex vascular anomalies and regularly publishes studies in leading journals on the topic. She has received numerous awards, for her teaching and mentorship and for her research and clinical accomplishments. Hospitals, universities, and conferences around the world have invited her to speak on the topic of vascular anomalies, recognizing her expertise in this area.

As director of the Hemangioma and Vascular Malformations Program at Hassenfeld Children’s Hospital at NYU Langone, Dr. Blei focuses on the diagnosis and management of vascular anomalies, including hemangiomas, vascular malformations, and lymphedema, as well as the many syndromes associated with vascular anomalies. Dr. Blei has been instrumental in the exponential growth in the field, promoting research and education internationally for medical providers of all specialties.

Dr. Iacobas developed a passion for vascular anomalies while in her pediatric hematology-oncology fellowship at Baylor College. After graduation she started a multidisciplinary vascular anomalies clinic in New Jersey. Upon return to Houston, she joined the Vascular Anomalies Center at Texas Children’s Hospital and became the Medical Director in 2017. Dr. Iacobus focuses on a multidisciplinary approach, working with a medical team experienced and dedicated to the care of vascular anomalies patients with the goal of making a significant difference in the care and quality of life for her patients.

Professor of Pediatrics, Hematology & Oncology; Vascular Anomalies Center, Stanford Medicine Children's Health Specialty Services, San Francisco, CA; Specialties: Langerhans Cell Histiocytosis. Sickle Cell Disease, and Vascular Anomalies

Dr. Sanchez is a clinical and biochemical geneticist in the Division of Medical Genetics at Emory University who is passionate about understanding the “whys” behind a patient’s complex symptoms at a molecular level. The reality is that few genetic conditions have approved therapies, but she is passionate about helping close that gap by being an investigator in clinical trials and patient registries, collaborating with experts worldwide, while partnering with patients and families to tailor care to their unique needs.

She completed her Pediatrics Residency at Nicklaus Children’s Hospital in Miami, FL, followed by Medical Genetics and Biochemical Genetics training at Emory University. She serves as the Program Director for both the Medical Genetics and Genomics Residency Program and the Combined Pediatrics–Medical Genetics Program, where she enjoys mentoring the next generation of geneticists and physician-scientists.

She is also lead in the Vascular Anomalies Clinic, where she works closely with a multidisciplinary team to provide comprehensive care for children and adults with complex vascular anomalies and overgrowth disorders. In addition, she serves as the physician champion for the telemedicine initiative at the Emory Genetics Clinic, helping expand access to genetic services for patients and families across Georgia and beyond.

In addition to his role as a provider in WashU’s Vascular Anomalies Clinic, Dr. Sisk’s research primarily focuses on communication between health care providers and families and understanding both what the child needs but also what the parent needs.

He plans to develop a robust, validated survey instrument to assess and track outcomes in patients and interventions to facilitate difficult communication.

Rick Guidotti, an award winning photographer, worked in NYC, Milan, Paris and London for a variety of high profile clients including Yves St Laurent, Revlon and L’Oreal. His work has been published in newspapers, magazines and journals as diverse as GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic Monthly and LIFE Magazine.

Rick founded POSITIVE EXPOSURE after a chance encounter in 1997 with a young lady living with albinism at a bus stop in New York City.  (Albinism is a genetic condition that results in the reaction or absence of pigmentation in the hair and skin.) As an artist, Rick was taken by her extraordinary beauty. In a quest for a better understanding of albinism, Rick sought out medical textbooks, where he was affronted by the dehumanizing images depicting disease, lacking all humanity. It was this experience which forced Rick to turn his lens from the more traditional ideas of beauty, to the beauty and richness of human diversity.

Rick has since spent more than twenty five years collaborating internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral or intellectual difference.

Shannon Cameron is an accomplished leader in healthcare operations and the revenue cycle, with more than 25 years of expertise and experience in operational management with multi-state, multi-disciplinary health organizations. She possesses an in-depth, hands-on knowledge of end-to-end revenue cycle and a strong proficiency with federal regulatory policy and managed care, revenue integrity, and finance for both physicians and facilities across multiple specialties, particularly with emergency medicine, radiology, anesthesia, radiation oncology, neurosurgery, laboratory/pathology, and general surgery. Cameron has held positions of significance with some of the industry's largest and most recognized organiations and has perfomed as lead investigative researcher and forensic auditor on several large fraud investigations for government-based inquiries including the OIG and CMS, as well as numerous private payers in the areas of physician billing, DME, and facility-based investigations and reviews. Cameron holds degrees in organizational management and healthcare administration, an MBA, and a Master of Health Informatics degree from the University of Tennessee.