Board of Directors
We are excited to have an opportunity to positively impact the future of PHACE through support and research.
We look forward to working with the many PHACE syndrome families and supporters for years to come.
PHACE Syndrome Community Board of Directors:
(click link for each person's bio)
All Board Members and Officers are unpaid volunteers and receive
no financial gain from their service to PHACE Syndrome Community, Inc.
BOARD OF DIRECTORS BIOGRAPHIES
Paul Butera - Vice President
Hometown: North Kingstown, RI
Paul is the Senior Director of Operations at Toray Plastic America, where he has demonstrated skills in Operations Management, Polymers, Plastics, Coatings, and Root Cause Analysis for more than twenty years. In this role, Paul leads a production facility of more than 200 people with outstanding profitability, efficiencies, and excellent safety and environmental performance.
Paul holds a BS in Chemical Engineering from Virginia Tech and an MBA from Bryant University. Paul enjoys spending time outdoors and touring the National Parks with his family. Paul and his wife Erin have been married for twenty years and have three children, Allison, Ryan, and Lena. Paul’s youngest daughter, Lena, was diagnosed with PHACE Syndrome in 2007. Paul has been a member of the PHACE Syndrome Community board since 2016.
Hometown: Belleville, Illinois
Dawn is a Social Worker at Missouri Veterans Endeavor, a non-profit that assists homeless veterans with securing housing and stability. Dawn brings with her skills in fundraising, advocacy, education, and community engagement.
Dawn learned about PHACE Syndrome in early 2020, when her daughter, Kenli, was diagnosed with having H, A, and E. Dawn is thrilled to join the PHACE Syndrome Community board to assist other families in understanding and navigating a PHACE Syndrome diagnosis and to help spread awareness about PHACE Syndrome.
Anna Kerr - Secretary
Hometown: Athen, OH
Dr. Kerr received her PhD in Communication from the University of Kentucky and is currently an Assistant Professor at Ohio University’s Heritage College of Osteopathic Medicine. As a communication scholar, her teaching and research focus on improving communication and decision making in healthcare. Dr. Kerr’s primary research aims to improve the experiences of caregivers caring for a loved one with a chronic, serious, or life-threatening condition.
Dr. Kerr’s research exploring the experiences of parents of children with birthmarks has been presented at international and national conferences and has been published in peer-reviewed journals. In 2015, her research with the Cincinnati Children’s Hospital Hemangioma and Vascular Malformation Center was awarded a Top Paper award by the National Communication Association.
Hometown: Pittsburgh, Pennsylvania
Michael is husband and father to two great kids, Aidan and Addison. The PHACE Syndrome Community (PSC) is an organization near and dear to his heart, as daughter, Addi, was diagnosed when she was 9 days old. Before the PSC was formed, Michael and his wife traveled to Milwaukee for various PHACE conferences to learn more about PHACE and form friendships with families who also had a child with PHACE. This community has been an invaluable resource for the Kotyk family.
Michael, owner and founder of Over the Bar Bicycle Café in Pittsburgh, is an avid cyclist, restaurateur, and landscape architect. Michael also serves on the Bike PGH board, which promotes safer cycling on the streets of Pittsburgh. He organizes and hosts the Race for PHACE in Pittsburgh, which in the last four years has raised over $50K for the PSC. He looks forward to the continued growth of the PSC and is passionate about helping the organization reach its fullest potential.
Dominic Lombardi - President
Hometown: Worcester, MA
Dom Lombardi is an Information Technology and Security leader with a specialization in information business and IT risk management, infrastructure, and operations within highly regulated areas. A former English and philosophy educator turned technologist, Dom is passionate about the point where people intersect with technology and how innovative technology solutions address organizational needs. Dom brings his passion for helping PHACE families and his skillset in IT to the PSC.
As the proud father of a child with PHACE, he has attended previous PSC Family Conferences and knows the value of connecting with other PHACE families.
He looks forward to moving the PSC into the next phase of serving families with improved online services.
Jill Salas - Treasurer
Hometown: Noblesville, IN
As a mom of a daughter diagnosed with the H, A, C and (S) of PHACE syndrome, Jill is honored to have the opportunity to volunteer her management and sales skills to the PHACE Syndrome Community. These skills coupled with her intimate insight and passion for the PHACE journey motivates her desire to work with my partners at the PSC. Jill is a founding member of the PSC and past Board President.
With the PSC Mission as our guide, Jill is excited to be part of an organization that positively influences the care, treatment and support of those diagnosed with PHACE Syndrome and their families.
Hometown: Reno, NV
Britta has been a public educator for over 25 years and has an immense passion for teaching. If she doesn’t know something, she will find out more about it. In her spare time, she is an outdoor
enthusiast and enjoys snow skiing, hiking, walking, reading, and traveling. She is a wife and mother
of two, Will and Annelise. Annelise was diagnosed with PHACE at 8 weeks of age.
The Scheffer family travels to visit pediatric specialists. Though Reno is not a “small” town it lacks
pediatric specialists, and most physicians have no prior knowledge about PHACE. Furthermore,
most of Nevada is still rural. Britta hopes to help educate pediatric physicians and families in
smaller communities about PHACE.
Dr. Dawn Siegel
Hometown: Stanford, CA
Dawn Siegel, MD is a Professor in Dermatology at Stanford University. She is affiliated with Lucile Packard Children's Hospital (LPCH) at Stanford and Stanford Hospital and Clinics (SHC). She received her medical degree from University of Wisconsin-Madison and completed her dermatology residency and pediatric dermatology fellowship at University of California San Francisco. She has been in practice for over 14 years. She specializes in hemangiomas, birthmarks, vascular anomalies, and neurocutaneous syndromes. Her research interests are in hemangiomas and the related multiple congenital anomaly syndrome, PHACE (Posterior Fossa anomalies, Hemangiomas, Arterial anomalies, Cardiac defects, and Eye anomalies), RASopathies and health disparities.
Dr. Siegel also serves on as the Director of PHACE Syndrome International Clinical Registry & Genetic Repository and is a current member of the PHACE Syndrome Community Board of Directors and Medical Advisory Board. She is working to find the cause of PHACE and to learn more about the history of PHACE throughout childhood and into adulthood. She has co-authored 25 articles on PHACE syndrome.
The PHACE Syndrome Community launched, and became a 501(c)3 in the Spring of 2013 with the following founding board members:
Dr. Beth Drolet
Mary Alice Kaspar
Dr. Denise Metry
Dr. A. David Russakoff